THE OFFICIAL PATIENT’S SOURCEBOOK
on
PINAL ORD NJURY J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
ii
ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Patient’s Sourcebook on Spinal Cord Injury: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83100-9 1. Spinal Cord Injury-Popular works. I. Title.
iii
Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
[email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.
iv
Dedication To the healthcare professionals dedicating their time and efforts to the study of spinal cord injury.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to spinal cord injury. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
v
About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
vi
About ICON Health Publications In addition to spinal cord injury, Official Patient’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Amyotrophic Lateral Sclerosis
·
The Official Patient's Sourcebook on Brachial Plexus Injuries
·
The Official Patient's Sourcebook on Brown Sequard
·
The Official Patient's Sourcebook on Chronic Inflammatory Demyelinating Polyneuropathy
·
The Official Patient's Sourcebook on Orthostatic Hypotension
·
The Official Patient's Sourcebook on Paresthesia
·
The Official Patient's Sourcebook on Peripheral Neuropathy
·
The Official Patient's Sourcebook on Primary Lateral Sclerosis
·
The Official Patient's Sourcebook on Reflex Sympathetic Dystrophy Syndrome
·
The Official Patient's Sourcebook on Shy Drager
·
The Official Patient's Sourcebook on Syringomyelia
·
The Official Patient's Sourcebook on Tethered Spinal Cord Syndrome
·
The Official Patient's Sourcebook on Thoracic Outlet Syndrome
·
The Official Patient's Sourcebook on Transverse Myelitis
·
The Official Patient's Sourcebook on Trigeminal Neuralgia
·
The Official Patient's Sourcebook on Whiplash
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents vii
Table of Contents INTRODUCTION...................................................................................... 1
Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4
PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON SPINAL CORD INJURY: GUIDELINES 9
Overview............................................................................................................... 9 What Is Spinal Cord Injury?.............................................................................. 10 The Normal Spinal Cord..................................................................................... 12 Anatomical and Functional Changes after Injury ............................................. 14 Clinical Management ......................................................................................... 15 Secondary Damage ............................................................................................. 17 Immune System Reactions ................................................................................. 18 Oxidative Damage .............................................................................................. 19 Calcium and Excitotoxicity ................................................................................ 20 Necrosis and Apoptosis....................................................................................... 21 Axon Damage ..................................................................................................... 24 Changes Below the Injury................................................................................... 25 Regeneration ....................................................................................................... 27 Transplantation .................................................................................................. 38 Current Interventions ........................................................................................ 41 Pre-Clinical and Clinical Testing of New Therapies.......................................... 45 Conclusion .......................................................................................................... 48 More Guideline Sources ..................................................................................... 49 Vocabulary Builder............................................................................................. 56
CHAPTER 2. SEEKING GUIDANCE ....................................................... 65
Overview............................................................................................................. 65 Associations and Spinal Cord Injury ................................................................. 65 Finding More Associations................................................................................. 81 Finding Doctors.................................................................................................. 82 Finding a Neurologist......................................................................................... 84 Selecting Your Doctor ........................................................................................ 84 Working with Your Doctor ................................................................................ 85 Broader Health-Related Resources ..................................................................... 86 Vocabulary Builder............................................................................................. 87
CHAPTER 3. CLINICAL TRIALS AND SPINAL CORD INJURY ................ 89
Overview............................................................................................................. 89 Recent Trials on Spinal Cord Injury .................................................................. 92 Benefits and Risks............................................................................................. 103
viii Contents
Keeping Current on Clinical Trials.................................................................. 106 General References............................................................................................ 107 Vocabulary Builder........................................................................................... 108
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL................................................ 111 CHAPTER 4. STUDIES ON SPINAL CORD INJURY ............................... 113
Overview........................................................................................................... 113 The Combined Health Information Database ................................................... 113 Federally-Funded Research on Spinal Cord Injury.......................................... 117 E-Journals: PubMed Central ............................................................................ 131 The National Library of Medicine: PubMed .................................................... 133 Vocabulary Builder........................................................................................... 138
CHAPTER 5. PATENTS ON SPINAL CORD INJURY .............................. 145
Overview........................................................................................................... 145 Patents on Spinal Cord Injury ......................................................................... 146 Patent Applications on Spinal Cord Injury ..................................................... 153 Keeping Current ............................................................................................... 155 Vocabulary Builder........................................................................................... 155
CHAPTER 6. BOOKS ON SPINAL CORD INJURY ................................. 157
Overview........................................................................................................... 157 Book Summaries: Federal Agencies .................................................................. 157 Book Summaries: Online Booksellers ............................................................... 158 The National Library of Medicine Book Index ................................................. 159 Chapters on Spinal Cord Injury ....................................................................... 163 Directories......................................................................................................... 168 General Home References ................................................................................. 169 Vocabulary Builder........................................................................................... 169
CHAPTER 7. MULTIMEDIA ON SPINAL CORD INJURY ....................... 171
Overview........................................................................................................... 171 Video Recordings .............................................................................................. 171 Bibliography: Multimedia on Spinal Cord Injury............................................ 172 Vocabulary Builder........................................................................................... 175
CHAPTER 8. PERIODICALS AND NEWS ON SPINAL CORD INJURY .... 177
Overview........................................................................................................... 177 News Services & Press Releases ....................................................................... 177 Newsletter Articles ........................................................................................... 182 Academic Periodicals covering Spinal Cord Injury ......................................... 183 Vocabulary Builder........................................................................................... 185
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 187
Overview........................................................................................................... 187 NIH Guidelines................................................................................................. 187 NIH Databases.................................................................................................. 188
Contents
ix
Other Commercial Databases ........................................................................... 193 The Genome Project and Spinal Cord Injury ................................................... 194 Specialized References....................................................................................... 198 Vocabulary Builder........................................................................................... 200
CHAPTER 10. DISSERTATIONS ON SPINAL CORD INJURY ................. 201
Overview........................................................................................................... 201 Dissertations on Spinal Cord Injury ................................................................ 201 Keeping Current ............................................................................................... 203 Vocabulary Builder........................................................................................... 203
PART III. APPENDICES .................................................. 205 APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 207
Overview........................................................................................................... 207 Your Medications: The Basics .......................................................................... 208 Learning More about Your Medications .......................................................... 210 Commercial Databases...................................................................................... 211 Contraindications and Interactions (Hidden Dangers) ................................... 212 A Final Warning .............................................................................................. 213 General References............................................................................................ 213 Vocabulary Builder........................................................................................... 214
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 215
Overview........................................................................................................... 215 What Is CAM? ................................................................................................. 215 What Are the Domains of Alternative Medicine?............................................ 216 Can Alternatives Affect My Treatment? ......................................................... 219 Finding CAM References on Spinal Cord Injury ............................................ 220 Additional Web Resources................................................................................ 230 General References............................................................................................ 232
APPENDIX C. RESEARCHING NUTRITION ......................................... 233
Overview........................................................................................................... 233 Food and Nutrition: General Principles........................................................... 234 Finding Studies on Spinal Cord Injury............................................................ 238 Federal Resources on Nutrition........................................................................ 242 Additional Web Resources................................................................................ 243 Vocabulary Builder........................................................................................... 243
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 245
Overview........................................................................................................... 245 Preparation ....................................................................................................... 245 Finding a Local Medical Library ...................................................................... 246 Medical Libraries Open to the Public............................................................... 246
APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 253
Overview........................................................................................................... 253 Your Rights as a Patient................................................................................... 253
x
Contents
Patient Responsibilities .................................................................................... 257 Choosing an Insurance Plan............................................................................. 258 Medicare and Medicaid .................................................................................... 260 NORD’s Medication Assistance Programs ..................................................... 263 Additional Resources ........................................................................................ 264
ONLINE GLOSSARIES.................................................... 267 Online Dictionary Directories.......................................................................... 268
SPINAL CORD INJURY GLOSSARY ........................... 269 General Dictionaries and Glossaries ................................................................ 288
INDEX................................................................................... 290
Introduction
1
INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3
Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
2
Spinal Cord Injury
Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Spinal Cord Injury has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to spinal cord injury, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on spinal cord injury. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on spinal cord injury should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate
Introduction
3
options is always up to the patient in consultation with their physician and healthcare providers.
Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching spinal cord injury (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to spinal cord injury. It also gives you sources of information that can help you find a doctor in your local area specializing in treating spinal cord injury. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with spinal cord injury. Part II moves on to advanced research dedicated to spinal cord injury. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on spinal cord injury. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with spinal cord injury or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with spinal cord injury. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with spinal cord injury.
Scope While this sourcebook covers spinal cord injury, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that spinal cord injury is often considered a synonym or a condition closely related to the following: ·
Cervical Fracture, Dislocation
·
Compression of Spinal Cord
4
Spinal Cord Injury
·
Spinal Cord Compression
·
Spinal Cord Injury
In addition to synonyms and related conditions, physicians may refer to spinal cord injury using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for spinal cord injury:4 ·
336.8 conus medullaris syndrome other lesions listed by site
·
336.9 spinal cord compression, nos
·
344.60 cauda equina syndrome
·
344.89 brown-séquard syndrome
·
952.0 cervical spinal cord injury
·
952.0 spinal cord injury without evidence of spinal bone injury, cervical
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to spinal cord injury. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
5
recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with spinal cord injury will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with spinal cord injury is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of spinal cord injury, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors
7
PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on spinal cord injury. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of spinal cord injury to you or even given you a pamphlet or brochure describing spinal cord injury. Now you are searching for more indepth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
9
CHAPTER 1. THE ESSENTIALS ON SPINAL CORD INJURY: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on spinal cord injury. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on spinal cord injury can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.
The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on spinal cord injury. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.
5
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
10 Spinal Cord Injury
There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with spinal cord injury and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Neurological Disorders and Stroke (NINDS); http://www.ninds.nih.gov/health_and_medical/disorder_index.htm
Among the above, the National Institute of Neurological Disorders and Stroke (NINDS) is particularly noteworthy. The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, by every segment of society, by people all over the world.6 To support this mission, the NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. The following patient guideline was recently published by the NINDS on spinal cord injury.
What Is Spinal Cord Injury?7 As the 20th century draws to a close, advances in scientific understanding of the human body are leading to tremendous opportunities for treating even the most devastating diseases. Among the most exciting frontiers in medicine is the repair of traumatic injuries to the central nervous system (CNS), including the spinal cord. Improvements in treatment are helping many more people survive spinal cord injury, and the time survivors must spend in the hospital is half what it was 20 years ago. Yet most spinal cord
6 This paragraph has been adapted from the NINDS: http://www.ninds.nih.gov/about_ninds/mission.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 7 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/pubs/sci_report.htm.
Guidelines 11
injuries still cause lifelong disability, and further research is critically needed. The injury of actor Christopher Reeve in 1995 drew the nation’s attention to the tragedy of spinal cord injury. Accidents and violence cause an estimated 10,000 spinal cord injuries each year, and more than 200,000 Americans live day-to-day with the disabling effects of such trauma. The incidence of spinal cord injuries peaks among people in their early 20s, with a small increase in the elderly population due to falls and degenerative diseases of the spine. Because spinal cord injuries usually occur in early adulthood, those affected often require costly supportive care for many decades. The individual costs may exceed $250,000 per year, placing an often overwhelming financial burden on these individuals and their families. For the nation, these costs add up to an estimated $10 billion per year for medical and supportive care alone. Of course, no dollar figure can describe the human costs to spinal cord injured people and their families. To explore new directions for research on spinal cord injury, the National Institutes of Health sponsored a scientific workshop on September 30 October 1, 1996. The workshop, Spinal Cord Injury: Emerging Concepts, brought together experts from the field of spinal cord injury research and leaders from other fields such as development, immunology, and stroke. The organizers hoped that interactions among these experts might bring new interest and new ideas to spinal cord injury research and foster fruitful collaborations between investigators. Because of the remarkable progress in basic and clinical neuroscience, the time is now ripe to apply knowledge from other fields to treatment of spinal cord injury. The workshop participants discussed four major topics: the current understanding and treatment of spinal cord injury, mechanisms of secondary damage, possibilities for regeneration, and strategies for intervention. The discussions revealed many areas where continued research could yield benefits. For example, in recent years scientists have gained a better understanding of how trauma injures nerve cells and why cells die. They know that secondary damage continues for hours following an initial trauma, presenting windows of opportunity to limit this damage. Other opportunities for therapeutic intervention, including rehabilitation strategies, extend well beyond this time window. Progress in understanding how the spinal cord changes after injury is pointing to new therapeutic approaches. The ultimate hope, of course, is not just to minimize damage, but to foster recovery. A century of pessimism about the capacity for regeneration in the
12 Spinal Cord Injury
brain and spinal cord is now giving way to guarded optimism. Scientists recently demonstrated that nerve cells in the spinal cord can regrow under certain circumstances. Insights from animal models of spinal cord injury and from studies of nervous system development are leading to strategies that may foster regeneration. Researchers also are making outstanding progress in devising neural prostheses that can substitute for some of the functions lost after spinal cord injury. While it is unlikely that the complex problem of spinal cord injury will be solved by a single dramatic discovery, small improvements in therapy can combine to improve the quality of life for those who live with such devastating injuries. To understand how treatment for spinal cord injury can be improved, it is important to understand the normal spinal cord and its functions, how these functions change after injury, and the status of current treatment.
The Normal Spinal Cord The spinal cord and the brain together make up the CNS. The spinal cord coordinates the body’s movement and sensation. Unlike nerve cells, or neurons, of the peripheral nervous system (PNS), which carry signals to the limbs, torso, and other parts of the body, neurons of the CNS do not regenerate after injury. The spinal cord includes nerve cells, or neurons, and long nerve fibers called axons. Axons in the spinal cord carry signals downward from the brain (along descending pathways) and upward toward the brain (along ascending pathways). Many axons in these pathways are covered by sheaths of an insulating substance called myelin, which gives them a whitish appearance; therefore, the region in which they lie is called “white matter.” The nerve cells themselves, with their tree-like branches called dendrites that receive signals from other nerve cells, make up “gray matter.” This gray matter lies in a butterfly-shaped region in the center of the spinal cord. Like the brain, the spinal cord is enclosed in three membranes (meninges): the pia mater, the innermost layer; the arachnoid, a delicate middle layer; and the dura mater, which is a tougher outer layer. The spinal cord is organized into segments along its length. Nerves from each segment connect to specific regions of the body. The segments in the neck, or cervical region, referred to as C1 through C8, control signals to the neck, arms, and hands. Those in the thoracic or upper back region (T1 through T12) relay signals to the torso and some parts of the arms. Those in the upper lumbar or mid-back region just below the ribs (L1 through L5)
Guidelines 13
control signals to the hips and legs. Finally, the sacral segments (S1 through S5) lie just below the lumbar segments in the mid-back and control signals to the groin, toes, and some parts of the legs. The effects of spinal cord injury at different segments reflect this organization. Several types of cells carry out spinal cord functions. Large motor neurons have long axons that control skeletal muscles in the neck, torso, and limbs. Sensory neurons called dorsal root ganglion cells, whose axons form the nerves that carry information from the body into the spinal cord, are found immediately outside the spinal cord. Spinal interneurons, which lie completely within the spinal cord, help integrate sensory information and generate coordinated signals that control muscles. Glia, or supporting cells, far outnumber neurons in the brain and spinal cord and perform many essential functions. One type of glial cell, the oligodendrocyte, creates the myelin sheaths that insulate axons and improve the speed and reliability of nerve signal transmission. Other glia enclose the spinal cord like the rim and spokes of a wheel, providing compartments for the ascending and descending nerve fiber tracts. Astrocytes, large star-shaped glial cells, regulate the composition of the fluids that surround nerve cells. Some of these cells also form scar tissue after injury. Smaller cells called microglia also become activated in response to injury and help clean up waste products. All of these glial cells produce substances that support neuron survival and influence axon growth. However, these cells may also impede recovery following injury. Nerve cells of the brain and spinal cord respond to insults differently from most other cells of the body, including those in the PNS. The brain and spinal cord (i.e., the CNS) are confined within bony cavities that protect them, but also render them vulnerable to compression damage caused by swelling or forceful injury. Cells of the CNS have a very high rate of metabolism and rely upon blood glucose for energy. The “safety factor,” that is the extent to which normal blood flow exceeds the minimum required for healthy functioning, is much smaller in the CNS than in other tissues. For these reasons, CNS cells are particularly vulnerable to reductions in blood flow (ischemia). Other unique features of the CNS are the “blood-brainbarrier” and the “blood-spinal-cord barrier.” These barriers, formed by cells lining blood vessels in the CNS, protect nerve cells by restricting entry of potentially harmful substances and cells of the immune system. Trauma may compromise these barriers, perhaps contributing to further damage in the brain and spinal cord. The blood-spinal-cord barrier also prevents entry of some potentially therapeutic drugs. Finally, in the brain and spinal cord, the glia and the extracellular matrix (the material that surrounds cells) differ
14 Spinal Cord Injury
from those in peripheral nerves. Each of these differences between the PNS and CNS contributes to their different responses to injury.
Anatomical and Functional Changes after Injury The types of disability associated with spinal cord injury vary greatly depending on the severity of the injury, the segment of the spinal cord at which the injury occurs, and which nerve fibers are damaged. In spinal cord injury, the destruction of nerve fibers that carry motor signals from the brain to the torso and limbs leads to muscle paralysis. Destruction of sensory nerve fibers can lead to loss of sensations such as touch, pressure, and temperature; it sometimes also causes pain. Other serious consequences can include exaggerated reflexes; loss of bladder and bowel control; sexual dysfunction; lost or decreased breathing capacity; impaired cough reflexes; and spasticity (abnormally strong muscle contractions). Most people with spinal cord injury regain some functions between a week and six months after injury, but the likelihood of spontaneous recovery diminishes after six months. Rehabilitation strategies can minimize the long-term disability. Spinal cord injuries can lead to many secondary complications, including pressure sores, increased susceptibility to respiratory diseases, and autonomic dysreflexia. Autonomic dysreflexia is a potentially lifethreatening increase in blood pressure, sweating, and other autonomic reflexes in reaction to bowel impaction or some other stimulus. Careful medical management and skilled supportive care is necessary to prevent these complications. Researchers studying spinal cords obtained from autopsy have identified several different types of spinal cord injuries. The most common types of spinal cord injuries found in one large study were contusions (bruising of the spinal cord) and compression injuries (caused by pressure on the spinal cord). Other types of injury included lacerations, caused by a bullet or other object, and central cord syndrome. In contusion injuries, a cavity, or hole, often forms in the center of the spinal cord. Myelinated axons typically survive in a ring along the inside edge of the cord. Some axons may survive in the center cavity, but they usually lose their myelin covering. This demyelination greatly slows the speed of nerve transmission. Slowing of nerve impulses can be measured by a diagnostic technique called transcranial magnetic stimulation (TMS).
Guidelines 15
Another example of a spinal cord injury is central cord syndrome, which affects the cervical (neck) region of the cord and results from focused damage to a group of nerve fibers called the corticospinal tract. The corticospinal tract controls movement by carrying signals between the brain and the spinal cord. Patients with central cord syndrome typically have relatively mild impairment, and they often spontaneously recover many of their abilities. Patients usually recover substantially by 6 weeks after injury, despite continued loss of axons and myelin. Delays in motor responses persist, but permanent impairment is usually confined to the hands. Complete severing of the spinal cord is rare in humans, but even axons that survive the initial injury often lose their ability to function. Secondary damage, which continues for hours, can cause loss of myelin, degeneration of axons, and nerve cell death. Patients with their spinal cords completely severed often show abnormal reflexes that emerge more than 8 months after injury. These reflexes, such as twitching of muscles in the arm and hand in response to sensory stimulation of the legs and feet, may result from “sprouting” of new branches from sensory fibers just below the lesion. They may also result from activation of nerve pathways that are normally suppressed. Other abnormal responses, such as sweating in response to movement of a hair, may be due to sprouting of nerves in the autonomic nervous system. The autonomic nervous system is the part of the PNS that controls involuntary body functions such as sweating and heart rate. Since even a small number of nerve fibers can support significant nervous system function, measures that reduce damage could allow much greater function than would otherwise be expected. Devising interventions that will achieve this goal is one of the major challenges in spinal cord injury research today.
Clinical Management Medical care of spinal cord injury has advanced greatly in the last 50 years. During World War II, injury to the spinal cord was usually fatal. While postwar advances in emergency care and rehabilitation allowed many patients to survive, methods for reducing the extent of injury were virtually unknown. Although techniques to reduce secondary damage, such as cord irrigation and cooling, were first tried 20 to 30 years ago, the principles underlying effective use of these strategies were not well understood. Significant advances in recent years, including an effective drug therapy for acute spinal cord injury (methylprednisolone) and better imaging techniques
16 Spinal Cord Injury
for diagnosing spinal damage, have improved the recovery of patients with spinal cord injuries. Current care of acute spinal cord injury involves three primary considerations. First, physicians must diagnose and relieve cord compression, gross misalignments of the spine, and other structural problems. Second, they must minimize cellular-level damage if at all possible. Finally, they must stabilize the vertebrae to prevent further injury. The care and treatment of persons with a suspected spinal cord injury begins with emergency medical services personnel, who must evaluate and immobilize the patient. Any movement of the person, or even resuscitation efforts, could cause further injury. Even with much-improved emergency medical care, many people with spinal cord injury still die before reaching the hospital. Methylprednisolone, a steroid, has become standard treatment for acute spinal cord injury since 1990, when a large-scale clinical trial showed significantly better recovery in patients who began treatment with this drug within 8 hours of their injury. Methylprednisolone reduces the damage to cellular membranes that contributes to neuronal death after injury. It also reduces inflammation near the injury and suppresses the activation of immune cells that appear to contribute to neuronal damage. Preventing this damage helps spare some nerve fibers that would otherwise be lost, improving the patient’s recovery. A controversial topic in the acute care of spinal cord injury is whether surgery to reduce pressure on the spinal cord and stabilize it is better than traction alone. A study in the 1970s showed that, in some cases, surgical intervention actually worsened the patient’s condition. This finding prompted many physicians to become more conservative about using these techniques, although advances in care since that time have reduced the risk of complications due to surgery. While there is no proof that surgeons must operate to decompress the spinal cord within the 8-hour time window established for methylprednisolone, many believe it may help and try to do it then. Early surgery also allows earlier movement and earlier physical therapy, which are important for preventing complications and regaining as much function as possible. Use of imaging methods such as computed tomography (CT) scans to visualize fractures and magnetic resonance imaging (MRI) to image contusions, disc herniation, and other damage can help define the appropriate treatment for a particular patient. Several types of metal plates, screws, and other devices also are now available for surgically stabilizing the spine.
Guidelines 17
Once a patient’s condition is stabilized, care and treatment focus on supportive care and rehabilitation strategies. Attention to supportive care can prevent many complications. For example, periodically changing the patient’s position can prevent pressure sores and respiratory complications. Rehabilitation, which focuses on the patient’s physical and emotional recovery, is also very important. Almost all patients with spinal cord injuries can now achieve a partial return of function with proper physical therapy that maintains flexibility and function of the muscles and joints. Physical therapy can also help reduce the risk of blood clots and boost the patient’s morale, while counseling can help a person adjust emotionally to the injury and its consequences. Recent years have seen many advances in understanding and treating spinal cord injury. These include the development of CT and MRI scans to visualize injuries and the use of methylprednisolone to reduce damage. However, many facets of what happens when the spinal cord is injured are still unknown. An exact description of the structural and tissue changes that occur in spinal cord injury is necessary for planning effective interventions. Studies aimed at better describing what happens following spinal cord injury may lead to improved treatments.
Secondary Damage Damage to the spinal cord does not stop with the initial injury, but continues in the hours following trauma. Paradoxically, this delayed, secondary damage is not all bad news because secondary injury processes present windows of time in which treatment may reduce the extent of disability. The effects of methylprednisolone demonstrate that such treatment is possible and present a model for the development of other treatments. Two major themes about secondary damage recurred throughout the workshop. The first theme reflects increasing recognition that similar cellular processes contribute to damage in many different neurological disorders. The second theme mirrors one of the most active areas in all of biology — how cells die. Cells, including those in the spinal cord, die in two general ways. Necrosis is a relatively uncontrolled process in which cells swell and break open, leaking substances that can be toxic to their neighbors. However, in apoptosis, or programmed cell death, cells activate a “cell suicide” program, an ordered sequence of events that leads to cell death with relatively little damage to surrounding cells. The relationship between apoptosis and necrosis, the role that each plays in spinal cord injury, the
18 Spinal Cord Injury
signals that regulate cell death, and the potential to halt death programs are now being explored to find ways of minimizing secondary damage following spinal cord injury.
Immune System Reactions There is no single point at which to begin describing the intricately intertwined cellular and molecular events that follow spinal cord injury. However, the immune reaction is a good place to start because of its importance. Most types of immune cells enter the CNS only rarely unless it has been damaged by trauma or disease. It is not always clear to what extent immune reactions help or harm prospects for recovery, although immune reactions do appear to cause some secondary damage. The last decade has brought extraordinary advances in understanding the immune system and its interactions with the nervous system. Using newly developed markers, scientists can identify subsets of immune cells with different functions and can monitor these cells in the nervous system. They are also beginning to understand the chemical language immune cells use to communicate. Cytokines, for example, are a diverse group of diffusible messenger molecules that control many aspects of immune cell function and also enable immune cells to influence other cells such as neurons. Cell adhesion molecules on the surfaces of cells control the traffic of immune cells into the brain and spinal cord and have other wide-ranging influences. Epithelial cells of blood vessels and various types of immune cells normally display certain cell adhesion molecules on their surface. These adhesion molecules change when blood vessel and immune cells encounter foreign molecules, sense damaged tissue in the vicinity, or detect cytokines. Advances in understanding the immune system are now being applied to learn how immune cells influence recovery from spinal cord injury. Microglial cells, which are normally found in the CNS, have some immune functions and become activated in response to damage. Following trauma, other types immune cells react to signals from damaged tissue and changes in endothelial cells by entering the CNS. Neutrophils are the first type of immune cells to enter the CNS from the rest of the body. These cells enter the spinal cord within about 12 hours of injury and are present for about a day. About 3 days after the injury, T-cells enter the CNS. T cells have many functions in the body, including killing infected cells and regulating many aspects of the immune response; however, their function in spinal cord injury is totally unknown. The key types of immune cells in spinal cord
Guidelines 19
injury appear to be macrophages and monocytes, which enter the CNS after the T-cells. These cells scavenge cellular debris. One type of macrophage, the perivascular cell, may also mediate damage to the endothelial cells that line blood vessels. It is not clear which signals control the entry of immune cells into the CNS, but changes in cell adhesion molecules most likely play an important role. What immune cells do once they enter the damaged spinal cord is poorly understood. Some cells engulf and eliminate debris as they do during inflammation in other parts of the body. Macrophages, monocytes, and microglial cells release a host of powerful regulatory substances that may help or hinder recovery from injury. Potentially beneficial substances released by these cells include the cytokines TGF-beta and GM-CSF (transforming growth factor-beta and granulocyte-macrophage colonystimulating factor) and several other growth factors. Apparently detrimental products include cytokines such as TNF-alpha and IL-1-beta (tumor necrosis factor-alpha and interleukin-1-beta) and chemicals such as superoxides and nitric oxide that may contribute to oxidative damage. Again, it is unclear what is helpful and harmful about many of these powerful substances in the context of the injured spinal cord. Several workshop participants emphasized how important it is to learn about the role of the immune response in spinal cord injury. Understanding the possible links between the immune system and oxidative damage, apoptosis of nerve cells, and demyelination is an important area for research. Other critical areas for study include the signals controlling the traffic of immune cells into the spinal cord following injury and the time course and subsets of immune cells involved. Progress in understanding the immune system now makes answering these questions technically possible.
Oxidative Damage After a spinal cord injury, the body’s inflammatory cells, among others, produce highly reactive oxidizing agents including “free radicals.” Oxidizing agents attack molecules that are crucial for cell function by modifying their chemical structures. This process is called oxidative damage. Oxidative damage occurs in disorders ranging from slow neurodegenerative diseases like amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and Parkinson’s disease to acute events like stroke and trauma. Thus, it has been the focus of intensive research. Scientists are learning which chemicals are responsible for oxidative damage in the nervous system, how they are generated, and what role the natural antioxidant defense systems play.
20 Spinal Cord Injury
Free radicals are produced as a byproduct of normal metabolism. The brain and spinal cord normally have a high rate of oxidative (energy-producing) metabolism. The increases in blood flow during “reperfusion,” when blood flow is restored following injury, may raise free radical production even more. Inflammation can also accelerate the production of free radicals. Many scientists believe that superoxides (oxygen molecules with an extra electron) can escape from the normal antioxidant defenses of the CNS and combine with hydrogen peroxide, also normally present, to form hydroxyl radicals (oxygen-hydrogen with an extra electron). In the test tube, hydroxyl radicals are extremely reactive and quickly attack crucial cellular structures and enzymes. However, evidence suggests that this scenario may be different in the living CNS. For one thing, the CNS has concentrations of enzymes that can safely inactivate free radicals. The antioxidant enzyme called copper-zinc superoxide dismutase (SOD), for example, is abundant in the CNS. Although hydroxyl radicals are the most reactive molecules in the test tube, nitric oxide may be a more important cause of oxidative damage in living animals. Nitric oxide itself is not very destructive — in fact the body uses it as a signaling molecule — but it can combine with superoxide ions to produce a very toxic compound called peroxynitrite. Nitric oxide forms peroxynitrite by a reaction that is a million times faster than the one that forms hydroxyl radicals, and it diffuses ten thousand times farther. Peroxynitrite increases its range of damage even more by inactivating some antioxidant defenses, such as SOD. This free radical also can change how cells respond to natural growth and survival factors; for example, it can change the effect of NGF (nerve growth factor) from protecting against apoptosis to accelerating this type of cell death. The complex actions of nitric oxide illustrate how the interactions between oxidants and biological systems influence how toxic the oxidants’ effects can be. These results focus attention on harmful chemical agents that elude antioxidant defenses and attack critical cell molecules. One useful finding is that nitric oxide damage leaves a characteristic molecular “footprint” on cell proteins. This footprint may allow researchers to identify targets of oxidative damage following spinal cord trauma and help in developing therapeutic and protective measures.
Calcium and Excitotoxicity Following trauma, an excessive release of neurotransmitters – chemical messengers that travel between neurons — can cause secondary damage by overexciting nerve cells. This phenomenon, called excitotoxicity, has been a
Guidelines 21
major focus of research on stroke and traumatic brain injury, and it may also contribute to neurodegenerative diseases and spinal cord injury. Researchers know about excitotoxicity (and calcium-mediated damage, which often follows) from both cell culture experiments, in which relevant variables are simplified and controlled, and from experiments in the much more complex living animals. Insights about excitotoxicity are now being applied to understanding secondary damage following spinal cord trauma. Glutamate is the neurotransmitter most often used by nerve cells to activate, or excite, one another. Excitotoxicity caused by excessive release of glutamate contributes to damage following traumatic CNS injury and stroke. Excessive glutamate can damage nerve cells and glia in several ways. One harmful sequence begins when glutamate overactivates a type of glutamate receptors called NMDA receptors, allowing high levels of calcium to enter the cell. Calcium regulates many cellular processes. For example, calcium activates certain proteases called calpains. Proteases are enzymes that degrade other proteins and have important regulatory roles in cells. Inappropriate activation of these enzymes can damage important parts of the cell. Calcium metabolism is intimately related to oxidative damage as well. Mitochondria—structures within cells that are responsible for producing energy by oxidation — actively take up calcium. Mitochondria damaged by excessive calcium may produce even more oxidizing free radicals. Excitotoxicity can also damage cells through processes that do not involve calcium. For example, glutamate allows entry into cells of ions such as sodium and chloride that can cause water to enter, leading to uncontrolled swelling.
Necrosis and Apoptosis New insights about how cells die are dramatically affecting many areas of disease research, and spinal cord injury is no exception. Until recently, scientists believed that necrosis, or uncontrolled cell death, was the only way cells die after CNS trauma. Findings presented at the workshop now suggest that apoptosis (programmed cell death) occurs in parallel with necrosis, and that delayed apoptosis contributes to secondary damage following spinal cord trauma. Cell death programs and experimental interventions to halt them were major themes of the workshop. Apoptosis occurs in many contexts other than disease. For example, it plays a key role in the developing nervous system. The embryonic spinal cord and brain generate many more neurons than are found in the adult organism. Neurons compete for natural chemicals called trophic factors that are
22 Spinal Cord Injury
supplied by target cells, and nerve cells that do not make proper connections die by apoptosis. Many forms of damage can trigger cell death. Cells undergoing apoptosis exhibit changes very different from those of cells dying from necrosis, reflecting the more controlled nature of programmed cell death. Necrotic cells swell and break open, leaking their contents into the surrounding area and provoking an inflammatory response. In apoptosis, cells go through a series of characteristic structural changes. During apoptosis, bubbles or “blebs” form in the outer cell membrane, and membrane-enclosed fragments of the cell may break away. The cell nucleus also condenses and fragments, and polyribosomes (the cellular machinery for synthesizing proteins) break up. In most cells, enzymes cut DNA into unequal pieces. This DNA degradation may have evolved as a defense against viruses that attempt to establish residence within cells. Chemicals released from dying cells then induce surrounding cells to scavenge the debris. Apoptosis eliminates damaged cells without releasing dangerous molecules like proteases and glutamate that might harm neighboring cells. It is not obvious that preventing apoptosis would be beneficial in spinal cord injury. Cells rescued from apoptosis might go on to die by necrosis and damage their neighbors. Nerve cells that survive a “suicide attempt” might have impaired function and be more disruptive than beneficial. In many cases, necrosis and apoptosis probably occur in parallel. In experiments reported at the workshop, necrosis from excitotoxicity killed most cultured cells from the mouse cerebral cortex. Blocking this excitotoxic necrosis with glutamate antagonist drugs and extending oxygen-glucose deprivation to overcome the protective effect led to apoptosis. Some drugs had opposite effects on necrosis and apoptosis. For example, certain chemical signals promoted necrosis but reduced apoptosis. Recently, scientists have found that apoptosis contributes to spinal cord cell death and dysfunction after trauma. Necrosis was prominent in rats subjected to severe spinal cord trauma. However, following milder trauma, cells died by apoptosis. Mapping the positions of apoptotic cells within these spinal cords revealed interesting patterns. Apoptosis of nerve cells was largely restricted to sites near the impact zone itself and generally occurred within about 8 hours of the trauma. Apoptosis in glial cells was much more prolonged, and a second wave of apoptosis occurred in the white matter — probably among oligodendrocytes — at about 7 days after injury. This wave of secondary death rippled out much further than the original site of injury. In one experiment, moderate-impact contusions in the rat spinal cord caused little apparent structural damage to myelinated axons in the first few hours,
Guidelines 23
but led to extensive demyelination, probably because of delayed apoptosis of oligodendrocytes, by 3 weeks after injury. These results are important in defining the time windows during which therapeutic intervention might be beneficial. Optimal strategies for saving nerve cells may be different from optimal strategies for saving oligodendrocytes. Much of what we know about the cellular mechanisms that underlie apoptosis comes from studies of the nematode worm C. elegans. This tiny worm has only about 300 nerve cells, each of which is individually recognizable, unlike the uncountable billions of neurons in a mammalian nervous system. These worms also allow genetic manipulations that are much more difficult to perform in mammals. Scientists studying C. elegans have begun to understand the basic elements of the cell death program by observing worms with mutations in genes that control apoptosis. These include death-suppressor genes, killer genes, genes that control engulfment of cell debris, and genes for degrading DNA. Crucial cellular processes are highly conserved in evolution, that is, they don’t change much between lower and higher animals. The detection of cell death genes in higher organisms, based on their resemblance to genes in worms, has been key to understanding cell death in mammals. The best-studied models of mammalian nerve cell apoptosis are cultures of sympathetic nerve cells (a type of PNS cell) from which the critical trophic factor NGF, or nerve growth factor, has been removed. The cell death program initiated by removing NGF includes five stages: activation, propagation, commitment, execution, and death. Scientists have now defined each stage by cellular events such as the activation of specific genes and enzyme systems. Up until the commitment stage, interrupting the synthesis of new proteins needed for the program to proceed can halt apoptosis. Even after that stage, blocking the actions of certain enzymes, especially a group of protein-degrading enzymes called the ICE (interleukin converting enzyme) family of proteases, can interrupt the death program. Cell death programs may differ among cells; for example, some cells apparently do not require new protein synthesis for apoptosis. Different cell death programs may occur even in the same type of nerve cell in response to different types of injury. In all cases, however, the cells actively participate in the process that leads to their demise. Using cultured PNS neurons, scientists have tested two strategies for interrupting programmed cell death. One method used drugs that inhibit the ICE family of proteases, proteins that are crucial for the cell death program. The other method used genetically engineered cells lacking bcl-2, a regulator gene needed for the apoptosis program to go forward. In other words,
24 Spinal Cord Injury
scientists bred mice in which the cell death program was genetically suppressed. Scientists found that regardless of the strategy tested, nerve cells deprived of NGF were arrested in a metabolically quiescent “undead state” for long periods. When subsequently given NGF, these cells were “resurrected” — they appeared normal and grew. Similar strategies have been used to block apoptosis in animal models of cerebral ischemia (stroke) and spinal cord injury. In rodent models of stroke, blocking apoptosis, either with drugs or by genetic manipulations, reduced brain damage after blood flow was interrupted. Improved movement in these animals showed that surviving brain cells could still function. Rats with spinal cord injuries that were given an inhibitor of protein synthesis for 1 month were able to retain some use of their hindlimbs. This radical treatment blocked apoptosis by preventing the synthesis of new proteins necessary for the cell death program to go forward. These studies collectively suggest that blocking cell death programs might buy time that will allow some cells to survive the initial trauma of spinal cord injury. However, the methods used to block cell death in these experiments are not practical for human application: The drugs can be toxic, and genetic manipulation to create humans resistant to injury is obviously not a viable solution. In addition to developing better drugs to block apoptosis, scientists need to answer several key questions about the nature of cell death. These questions include what triggers apoptosis, how developmental apoptosis resembles (or differs from) injury-related apoptosis, how cell death programs and timing vary in different cell types, and to what extent this form of cell death contributes to the functional losses seen in patients with spinal cord injury.
Axon Damage With the current scientific excitement about cell death, it is important to emphasize that damage to axons causes most of the problems associated with spinal cord injury, including loss of motor control and sensation. In rat spinal cord contusion injuries, for example, recovery of function correlates closely to the number of remaining axons. Until recently, most researchers assumed that the physical forces of spinal cord trauma immediately tear axons. Recent studies of axon damage following traumatic brain injury are changing this view. Within several days of traumatic brain or spinal cord injury, grossly swollen axons, termed “reactive swellings” or “retraction balls,” appear. Many
Guidelines 25
scientists believe that physical forces of trauma stretch axon fibers, causing them to tear and swell. Studies using multiple animal models and various anatomical tracers now have shown that much of the axon damage following CNS trauma is not immediate. Instead, it occurs hours later from swelling caused by impaired axonal transport. Axonal transport is a vital cellular process that moves molecules and cell components from the cell body toward the axon terminal and from the terminal back to the cell body. What disrupts axonal transport and causes delayed axon damage? There appear to be multiple causes, but changes to the cytoskeleton play a critical role. The cytoskeleton is the internal scaffolding that determines the shapes of cells. It is necessary for transport of substances along the axons. In severe injuries, changes in the cell membrane that surrounds axons can allow an abnormal influx of ions, particularly calcium. This leads to compacting of the cytoskeleton and interruption of axonal transport. Calpain, a calciumactivated protein-degrading enzyme, probably participates in this process. Swelling and disrupted transport also occur in axons whose membranes show no change in ion permeability. In these axons, which predominate in mild to moderate injuries, neurofilaments (one component of the cytoskeleton) become misaligned. This, again, impairs transport and leads to swelling of axons. Damage to axons has several consequences within the spinal cord. Following axon injury, axons disconnected from their nerve cell bodies disintegrate by a process called “Wallerian” or “orthograde” degeneration. Nerve cell bodies with damaged axons, and the axon segment that remains attached, may die by retrograde degeneration, that is, degeneration that begins at the site of injury and progresses back toward the cell body. From a functional point of view, the delayed death of oligodendrocytes and the resulting demyelination of axons are also critical events, because unmyelinated axons do not conduct electrical impulses normally. The death of these glial cells may result partly from the degeneration of damaged axons because oligodendrocytes apparently require contact with axons to remain healthy. The removal of normal nerve connections also has important consequences. The diverse effects of axon injury suggest that more than one therapeutic approach may be needed to overcome this damage.
Changes Below the Injury While the most dramatic changes in the spinal cord occur at or near the site of injury, the spinal cord also changes below that point. Understanding these changes is becoming more important as researchers learn how to foster axon
26 Spinal Cord Injury
regeneration. A key question is what regenerating axons will find when they reach the spinal cord below the injury. Changes below the injury site also influence clinical symptoms, such as reflex changes and spasticity, and they may be a factor in the success of future neural prostheses that might rely upon spinal reflexes or motor control circuits. The spinal cord is not just a passive conduit carrying signals to and from the brain. It helps to control movement and to interpret sensory information flowing in from the body. Walking, for example, includes three neural processes. First, networks of nerve cells within the spinal cord (central pattern generators) generate the basic motor patterns that activate muscles in the sequence appropriate for walking. Second, sensory feedback from the limbs into the spinal cord modifies this basic motor pattern. Third, control signals from higher centers in the brain modulate the spinal circuits. These higher centers turn the spinal pattern generators on and off, shift between different types of locomotion, control sensory influences according to the type of movements, and govern posture and balance. Scientists are beginning to learn how these systems work and how they come together during development. How the spinal cord circuitry below the trauma site changes following injury is poorly understood, but scientists are beginning to recognize that these changes are important. In one series of experiments, scientists transected the spinal cords of chick embryos and removed a segment. Spinal cords in very young chick embryos regenerated remarkably well. In older embryos, however, axons did not regenerate and many motor neurons, interneurons, and sensory neurons died below the injury. This cell death resulted from the injury rather than from the programmed cell death that normally occurs during development. These experiments suggest that death of cells below the site of injury may be a factor in human spinal cord injury as well. Spinal cord injury also may alter connections among nerve cells that survive below the injury. The adult CNS is much more plastic, or changeable, than scientists believed just a few years ago. One interesting discovery is that some of the cellular mechanisms that allow the nervous system to adapt with experience, such as glutamate signaling and calcium-mediated events, are the same as those that go awry after injury and cause secondary damage. This discovery may explain why some of these apparently harmful mechanisms have persisted in evolution. Immediately after spinal cord trauma, nerve cells below the site of injury are excited by trauma-induced release of neurotransmitters. A loss of normal excitatory and inhibitory signals follows when the severed axons die. In
Guidelines 27
many parts of the CNS, including the spinal cord, strong excitation of neurons modifies the strength of synapses. This form of plasticity might alter the remaining circuits of the spinal cord in unpredictable ways. The removal of normal signals also provokes sprouting of nearby axons into the territory vacated by degenerating axons. The consequences of this rewiring are hard to predict. They may include the changes in reflexes often seen in people with spinal cord injury. These complex and diverse consequences suggest that attention to the changes below the site of spinal cord injury may be essential for successful regeneration and rehabilitation. Scientists who have been studying spinal cord injury for many years say that spinal cord injury research has now come of age. Because of progress in neuroscience, as well as in spinal cord injury research, researchers can test specific ideas about how changes in cells and molecules affect spinal cord injury. Not long ago, only descriptive studies were possible. Oxidative free radicals, calcium-mediated damage, proteases, cytoskeletal dysfunction, excitotoxicity, immune reactions, apoptosis, and necrosis all come into play following spinal cord injury. These sources of secondary damage interact in complex ways that scientists are just beginning to understand. What is encouraging is that each of these harmful processes offers targets for developing therapies. Much of the workshop discussion about secondary injury processes relied upon experiments in fields other than spinal cord injury, especially stroke and traumatic brain injury. The potential for application of such findings to spinal cord injury was one of the most exciting aspects of the workshop. While scientists do not agree about how directly this information will apply to the specifics of spinal cord trauma, most believe that studying other disorders can provide insights that will improve understanding of spinal cord injury. Most importantly, studies in other experimental systems can provide hypotheses to test in models of spinal cord injury itself.
Regeneration For successful regeneration to occur following spinal cord injury, several things must happen. First, damaged nerve cells and supporting cells must survive or be replaced, despite the acute effects of trauma and the conspiracy of processes that cause secondary damage. Replacement of lost cells in the CNS is unlikely without intervention because adult nerve cells in the brain and spinal cord cannot divide. Nerve cells that survive the injury often must regrow axons, despite tissue changes such as cavity formation that obstruct
28 Spinal Cord Injury
growth. Axons also must navigate among the myriad possibilities to find appropriate targets. Once the axons locate their targets, they must construct specialized structures to release neurotransmitters at synapses, while target cells must assemble and precisely locate the structures needed to respond to neurotransmitters. Finally, the neural circuitry may have to compensate for changes that have occurred in the spinal cord circuitry following injury. Until recently, most scientists believed that nerve cells in the CNS of adult mammals could not regenerate. Dramatic findings, some presented at this workshop, are now changing that pessimistic outlook. For example, some studies have demonstrated that nerve cells in the brain and spinal cord make unsuccessful attempts to regenerate and can regrow under some conditions. New findings also demonstrate that the spinal cord has more active repair mechanisms than previously suspected. Although researchers recognize the many obstacles to obtaining regeneration in the human spinal cord, they believe successful regeneration of even a small percentage of nerve fibers will produce significant recovery of function.
Implications of Development Scientists favor the spinal cord for studying the CNS because it is simpler than the brain. The long tradition of anatomical and physiological research on the cord provides a solid framework for studying development. Developing nerve cells perform the same steps needed for regeneration — they grow, navigate, and make appropriate connections. Regenerating nerve fibers face problems that are quite different from those faced by developing nerve cells, however. For example, the tissue through which axons move is more loosely connected during development, and an injured spinal cord may become quite disorganized near the injury site. Also, distances in the adult CNS are much greater than in the embryo, and chemical signposts for navigating axons may have changed in the adult. While the extent to which regeneration resembles development is uncertain, research about nervous system development is a source of crucial insights about how to promote regeneration following spinal cord injury.
Nerve Cell Differentiation The adult spinal cord is an intricate assembly of cells and nerve fibers arrayed in specific locations with very precise interconnections. Nerve cells in the spinal cord include several types of motor neurons, sensory neurons, and interneurons, each of which varies in shape, electrical activity,
Guidelines 29
neurotransmitter release, and many aspects. Glial cells also include several specialized types of cells in the mature CNS, and the major nerve pathways of the spinal cord white matter are highly organized anatomically. How all of this comes about has been a subject of speculation and experiments for more than a century. The mystery is finally giving way to traditional neuroscience research methods, augmented by new technologies such as molecular genetics. The factors causing cell types in the spinal cord to become distinct from one another are cell lineage (which cells arise from which by cell division) and cues from within the developing embryo. Research is now identifying these chemical cues and discovering how cells respond to them. Two major signaling systems control the fate of embryonic brain and spinal cord cells. One system controls the specialization of the nervous system along the long axis from the brain down through the spinal cord. The other system controls specialization along the dorsoventral plane, that is, in a cross-section of the spinal cord (“dorsal” refers to the back portion and “ventral” denotes the abdominal direction). So far, the general operating principles of the two systems appear to be the same. The control of cell identity along the dorsoventral axis of the spinal cord illustrates how these developmental systems operate. Among the essential tools scientists developed to study this process are chemical markers that stain specific cell types before they fully specialize in the embryonic spinal cord. Three cell types form in the ventral part of the early embryonic spinal cord. Glial cells form in the most ventral part, called the floor plate; motor neurons and interneurons form more dorsally. Experiments have shown that the key signal that determines the fate of all three cell types is a protein called sonic hedgehog. (The name arises because this mammalian molecule was identified by its resemblance to the “hedgehog” protein of the fruitfly. Flies with a mutation in the hedgehog gene have a peculiar prickly appearance.) To simulate the situation in the developing embryo, scientists placed pieces of ventral spinal cord in cell culture and exposed them to different concentrations of sonic hedgehog protein. These pieces produced motor neurons, glia, or interneurons depending on the concentration of protein to which they were exposed. In the embryo, a structure called the notochord releases the sonic hedgehog protein signal. Spinal cord cells that lie closest to the notochord are exposed to the highest concentration of the signal and become glial cells. Those in more dorsal positions are exposed to lesser concentrations and become, respectively, motor neurons and interneurons.
30 Spinal Cord Injury
Although scientists are rapidly identifying the signals that drive the generation of cell types in the developing spinal cord, many basic questions remain. Many signals have yet to be discovered, and it is not yet clear how cells sense small differences in concentrations and respond to become specialized cell types. Interactions among the various signaling systems are likewise obscure. Answers to these questions may have implications for spinal cord regeneration. In the last few years, scientists have discovered that even the mature CNS may harbor latent progenitor cells that can divide and specialize to form new nerve and glial cells. In a rat model of spinal cord trauma, the single layer of cells lining the central canal of the spinal cord expands to multiple layers of cells about 48 hours after a contusion lesion. The central canal is continuous with the brain ventricles, large fluid-filled spaces inside the brain. During development, new nerve cells arise from cells lining these structures. Cells from the expanded central canal of injured animals appear to stream out into the spinal cord; these may be neural progenitor cells attempting to repair damaged tissue. It is important to know whether developmental signals that might guide neuron growth persist in the adult. Another reason studies of cell specialization may be relevant to spinal cord injury is that the molecules involved in this developmental process may have other important functions in the adult. Understanding the signals that control cell specialization in development may be critical for learning how to help them repair damaged spinal cords. Many new findings presented at the workshop reflected the ways researchers now study the molecular machinery by which cells operate. Knowing the genetic code for proteins allows scientists to detect similarities among proteins. By comparing genes among different species, researchers can rapidly apply insights from lower organisms to mammals. Comparing newly identified genes and proteins to known ones within the same animal can also help scientists understand what a newly discovered protein does. Identifying one protein often helps reveal other members of the same protein family that have related functions, as in families of growth factors, cell adhesion molecules, and neurotransmitter receptors. Scientists are also learning to recognize functional regions that many proteins share in different combinations. Gene sequences predict many aspects of a protein’s function, such as whether it will respond to certain regulator molecules. Thus, the chemical language that orchestrates development provides crucial clues about regeneration, even if the processes differ.
Guidelines 31
Axon Pathfinding Developing nerve cells of the brain and spinal cord grow axons over long distances, along specific routes, and to precise targets. The tip of a growing axon forms a specialized structure called a growth cone. These growth cones sense cues, integrate that information, and make choices that steer the axon in one direction or another. Scientists have identified attractants and repellents that diffuse over long distances, as well as chemical attractants and repellents with fixed locations. Together, these cues allow axons to navigate through the developing brain and spinal cord. The identification of one family of long-distance attractants, the netrins, illustrates this area of research and its potential relevance to spinal cord regeneration. A century ago, the Spanish neuroanatomist Ramón y Cajal speculated that diffusible chemical signals might guide growing axons. The first such signals, called netrins, were discovered just a few years ago in the chick spinal cord. “Commissural” neurons in the dorsal part of the spinal cord send axons from the front of the cord around toward the back. When the growth cones of these axons approach the midline of the developing spinal cord, they make a beeline for the floor plate, a specialized region of the embryonic spinal cord at the ventral edge of the midline. When scientists placed pieces of developing spinal cords in various arrangements in culture, they found that something in the ventral floorplate attracted growing commissural axons from a distance. They isolated the attractants and named the identified proteins netrins. When scientists further examined the effects of netrins, they found that these molecules also repelled growing axons from other types of developing nerve cells. This finding was predicted by studies in worms of molecules that closely resemble netrins. Experiments in normal and mutant mice confirmed that these molecules guide developing axons in living mammals. Many guidance molecules were only recently identified, and certainly more remain to be found. Similarities between guidance molecules in mammals and those in simple organisms like worms and fruitflies are speeding progress in this area of neurobiology. Whether regenerating axons respond to guidance signals in the same manner as developing axons and whether these cues are still present in the adult spinal cord are particularly important questions for spinal cord regeneration. Ultimately, scientists hope to find ways to manipulate these signaling mechanisms to enhance regeneration.
32 Spinal Cord Injury
Synapse Formation For regeneration to be successful, axons must not only grow but also find and connect to appropriate targets. Axons must construct the highly specialized structures that release neurotransmitters from nerve terminals. Cells that receive signals across synapses also must participate in forming new synapses at a time when they would not normally do so. They must assemble in precisely the right places the specialized structures necessary to respond to neurotransmitters. Finally, the developing spinal cord must insure that synapses of the correct type form only on proper cells and on the appropriate parts of these cells so that the neural circuits will work. Although scientists know very little about how new synapses form in the adult mammalian spinal cord, they are learning how synapses develop in the skeletal neuromuscular junctions (NMJs), the synapses by which motor neurons activate muscle cells. NMJs are much more accessible for study than synapses in the spinal cord, and scientists have therefore used them to learn about the basic principles of synapse development and function. These nerve-muscle synapses also regenerate, which allows comparison of development and regeneration. Although axons and muscle cells can each synthesize the specialized components they need to form synapses, development of synapses requires back-and-forth signaling between the two cell types. At the turn of the century, scientists demonstrated that regenerating motor nerves form synapses at the exact sites of former synapses, even though synapses cover only a tiny percentage of the available muscle surface. This means muscle cells must have “stop signals” that axons can recognize. Muscles also regulate their receptivity to synapse formation according to whether they already have a nerve connection. An implanted nerve will not form a synapse with a muscle unless the original nerve to that muscle has been removed. Muscles that have lost their nerve connections may also release molecules that entice axons to make new synapses. In the modern era, scientists have added the tools of genetics to traditional methods of developmental neuroscience research. They can now test the role of particular molecules in synapse formation by creating mutant mice, such as “knockout mice,” that lack a particular protein. Studies with knockout mice have shown how a protein called agrin helps the developing muscle aggregate molecules called acetylcholine receptors at the synapse where they are needed. Acetylcholine receptors enable muscle cells to respond to the neurotransmitter acetylcholine, which is released from the nerve terminal. Agrin knockout mice died before birth or were stillborn because of defective
Guidelines 33
NMJs. Interestingly, inactivating the agrin gene not only affected muscle, but also the perturbed axons. This reflects the complex interactive nature of the signaling process between axons and their targets, which scientists are just beginning to understand. Scientists are now creating genetically altered mice to study other molecules that control the development of the NMJ. In many ways, synapses within the brain and spinal cord resemble the NMJ, but not completely. Some, but not all, of the molecules that control development of the NMJ are present in the developing CNS. Each muscle cell receives synapses from only one axon, and all of these use the same neurotransmitter (acetylcholine). A single spinal cord nerve cell, on the other hand, may receive thousands of synapses from nerve cells of the brain and spinal cord and from sensory nerves of the body. Each spinal cord neuron may also respond to several different neurotransmitters. So, while spinal cord synapses and NMJ probably share the same general principles, the spinal cord must need additional signals to form synapses. Understanding synapse formation is becoming increasingly important as the prospect improves for obtaining survival and growth of spinal cord cells after injury. So far, nerve fibers regrowing in experimental animal models of spinal cord regeneration have developed few new synapses, and this may be the limiting factor in recovery of movement. Understanding how synapses develop may reveal whether spinal regeneration stops because regenerating axons lack the ability to form synapses or whether nerve cells below the lesion are unreceptive to synapse formation. This may lead to ways of encouraging the formation of new synapses by regenerating fibers. Basic Regeneration Studies Scientists have long known that nerve cells outside the brain and spinal cord can regenerate, but they believed that nerve cells in the CNS of adults could not regrow. In the early 1980s, experiments in the spinal cords of animals showed that CNS neurons can regrow under certain conditions. These experiments were inspired by the idea that adult CNS cells might be able to grow if given a permissive growth environment. Scientists grafted segments of sciatic nerve — a peripheral nerve that can regenerate — to the spinal cord, circumventing the lesion site. Some nerve cells, usually from near the site of the lesion, grew axons through the nerve bridges as far as 3 or 4 centimeters and reached the other end of the bridge. Some nerve cells in the lower parts of the brain also grew into the graft. Because of the complexity of the spinal cord, researchers could not accurately assess whether regrowing nerve cells made functional synapses or exactly what about the sciatic nerve
34 Spinal Cord Injury
bridges was “permissive.” For this reason, some scientists turned to another model system to study CNS regeneration—the retina. The retina of the eye is an outpost of the brain. Like the spinal cord, it is part of the CNS. Retinal neurons called ganglion cells carry signals from the retina to the brain. Their axons, together with supporting cells, form the optic nerve. Cutting or crushing the optic nerve, and thus the axons of the retinal ganglion cells, has become an important model for injury and regeneration in the CNS. Retinal ganglion cells normally do not regenerate after the optic nerve has been transected. In early experiments, scientists placed peripheral nerve bridges from the site of damage in optic nerves (usually near the retina) to appropriate targets in the brain. The nerve grafts bypassed the problem of pathfinding by funneling growing axons directly to the correct region of the brain. Some ganglion cell axons grew distances equivalent to nearly twice their normal length. However, at best only a small percentage of axons regrew in these experiments since most cells died soon after transection. Some axons did penetrate the brain and make synapses, restoring the simple reflex response of pupils to light and the animals’ light-avoidance behavior. Axons that reached the brain found the appropriate layers and parts of cells in the brain, but failed to recreate the proper, orderly representation of the visual world on the brain. These retinal regeneration experiments raised many questions. What makes peripheral nervous system tissue supportive for growth? Are there growth factors in the nerve grafts that are not available in the adult CNS, or are growth inhibitors normally present in the adult CNS absent from the grafts? Why do so many ganglion cells die and so few regenerate? Do intrinsic genetic programs of these cells affect success and failure? How does regeneration resemble and differ from development? Experiments are beginning to answer these kinds of questions.
Trophic Factors For nerve cells to regenerate axons, they must first survive the injury. Trophic factors are signals that promote the survival and growth of nerve cells. The classical studies of trophic factors in development showed that nerve cells become dependent on these substances during the period when they specialize and begin to connect with their targets. The developing nervous system produces many more nerve cells than the adult nervous system needs. Cells compete with one another to obtain trophic factors
Guidelines 35
supplied by appropriate target cells. Those neurons that do not succeed in competing for appropriate connections die through apoptosis. The first trophic factor isolated was NGF (nerve growth factor). NGF is essential for the survival of some types of nerve cells in the PNS. Withdrawing NGF from peripheral neurons in culture is an important way of studying apoptosis in nerve cells. In the last several years, scientists have found that trophic factors are important in the development of the CNS as well. At the workshop, participants reported experiments suggesting that there are important differences in the trophic factor requirements of central and peripheral nerve cells. Those differences may help explain why CNS nerve cells do not regenerate. Here again, retinal ganglion cells are favorable subjects for CNS research. Scientists developed methods to isolate these cells with 99 percent purity, allowing precise studies of the factors these cells need to survive and grow. The scientists then attempted to sustain these cells in culture using trophic factors that the cells might encounter in their normal course from the retina to the brain. None of these factors alone was sufficient for more than 1 percent of retinal ganglion cells to survive for even 3 days. Studies in peripheral nerve cells have shown that activating the cyclic AMP “second messenger” system augments the effects of trophic factors. Cyclic AMP is a small molecule that carries messages from cell surface receptors activated by “first messengers” (hormones, neurotransmitters, or other signals) to sites within the cell. Like other second messenger systems, this biochemical pathway allows a single first messenger to control several cellular processes and helps in regulating and integrating the many signals cells receive. Although activating the cyclic AMP second messenger pathway with the drug forskolin did not sustain retinal ganglion cells in culture, and trophic factors alone were insufficient, the two combined saved more than a third of the cultured cells. Combining multiple trophic factors with forskolin allowed survival of more than half of the cultured cells for more than a month. Adding other, as yet unpurified, factors boosted survival to more than 80 percent. These experiments suggest that combinations of trophic factors may be essential for survival of CNS neurons. Another important insight is that the responsiveness of CNS cells to trophic factors is not static, but can change depending on the level of second messengers. Electrical activity and signals from other cells stimulate second messenger systems, and these influences change dramatically for cells below a spinal cord injury. Administering trophic factors and controlling responsiveness to these factors may promote
36 Spinal Cord Injury
nerve cell survival in the damaged spinal cord. However, these powerful and poorly understood substances can also have serious side effects. Scientists are not yet certain whether adult spinal cord nerve cells need combinations of trophic factors, which trophic factors affect which cell types, or what controls the cells’ sensitivity to these factors. In one important finding from the retina culture experiments, scientists learned that survival and axon growth were always coupled; that is, any interventions that allowed cells to survive also prompted them to extend their axons.
Intrinsic Growth Programs Nerve cells’ intrinsic capacity to grow is another factor that may contribute to the success or failure of regeneration. Scientists have studied intrinsic growth capacity by comparing cells from young animals to those from older ones. Very young animals generally recover more completely from CNS damage than do adult animals. By placing the retina and the tectum (the brain area to which retinal ganglion cells connect) from animals together in culture, scientists demonstrated that regeneration in culture is also agedependent. They then independently varied the age of the tectal and retinal pieces placed together in culture to determine to what extent each contributed to the failure to grow in older animals. The results showed two major reductions in the ability of ganglion cells to grow as the animal ages. The first, larger reduction was due to changes in the growth capacity of the retinal cells themselves. The later, smaller reduction, was more gradual and appeared to be due mostly to changes in the target tissue. Providing growth factors partially increased survival and growth but could not overcome the early large decline in growth ability. Biologists believe changes in growth capacity probably reflect changes in the specific genes that are active in each cell. Several genes were inactivated at about the time that regeneration declined, but one gene was turned off just as the capacity to regenerate was lost. Surprisingly, that gene was bcl-2, which is well-known because its product is an important regulator of apoptosis. Retinal ganglion cells taken from mice with an inactivated bcl-2 gene (bcl-2 knockout mice) did not show the normal sharp decline in growth ability. Even cells from the adult retina of these knockout mice could grow if they were given embryonic tissue as a target. Experiments with drugs directed at enzymes in the apoptosis pathway showed that the bcl-2 gene’s effects on growth were separate from its effects on apoptosis. This gene apparently acts as a “switch” that controls axon growth in the CNS. Finding ways to control this switch may yield a new approach to therapy for spinal
Guidelines 37
cord injury that may complement other therapies such as trophic factors. While this treatment approach appears beyond genetic technology at the moment, understanding the role played by these intrinsic programs in regulating the neuron growth will provide important insights into regeneration.
Barriers to Growth Scientists have now identified a long list of molecules in the adult CNS that actively inhibit growth. For example, oligodendrocytes produce a myelinassociated growth inhibitor that may be one of the most important inhibitors of growth in the adult spinal cord. One way these inhibitors act is by making growth cones collapse. Growth inhibition may be quite specific for each nerve cell type; that is, different cells may be most sensitive to different inhibitors. Another way inhibitors act is by modifying the extracellular matrix, the noncellular material surrounding cells through which axons must grow. For example, some substances act as “anti-adhesives,” preventing growing axons from sticking to surrounding tissue, which is necessary for them to grow forward. How inhibitors block axon growth and which of the many inhibitors are clinically important following spinal cord injury are essential questions that scientists are now trying to answer. Scientists need to determine the normal physiological roles of the many substances that inhibit growth in the adult spinal cord. Similarities in how these inhibitors work might allow generic strategies for overcoming their effects. One possibility would be to find common pathways, such as second messenger systems, through which these factors operate. Experiments with a component of pertussis toxin (a toxin from the bacteria that causes whooping cough) suggest that this might be possible. This toxin, which affects second messengers, blocked growth cone collapse from three very different inhibitory factors (collapsin-1, thrombin, and the myelin-associated factor). Because the extracellular matrix that surrounds cells is a repository for many inhibitory substances, understanding the interaction of cells with the extracellular matrix is an important focus of research. Finally, signals that inhibit and stimulate growth might converge on common intracellular machinery so that sufficient stimulation might overcome some of the inhibition. Experiments with trophic factors in retinal ganglion cells support this idea.
38 Spinal Cord Injury
Applied Regeneration Studies Researchers are beginning to apply knowledge about nerve growth and inhibitory factors and other aspects of neuron regeneration by testing new therapeutic approaches in animal models of spinal cord injury. The partial success of several of these animal experiments has led to optimism by many experts that, with the right combination of strategies, regeneration will eventually become possible in humans. However, it now appears unlikely that there will be a single magic bullet for repairing the spinal cord. Instead, a combination of approaches will probably be necessary.
Transplantation One approach for repairing spinal cords that is being tested in animals is to transplant cells and tissues into the damaged spinal cord. In particular, scientists are transplanting cells or pieces of peripheral nerves that produce substances that create an environment for axons to grow. This idea was first advocated about 100 years ago by the neurologist Ramón y Cajal. He suggested implanting cells from the PNS into the area of a CNS injury. Since the environment of the PNS supports axon regeneration, he believed recreating this environment in the spinal cord might allow CNS axons to regrow after an injury. Ideally, this environment would also point growing nerves to the correct targets. Experiments with PNS transplants in rat models of spinal cord injury have led to axon elongation and cell body changes associated with regrowth. Transplants from the PNS also seem to reduce scarring around the injury that may impede regrowth. One technique tested in rats is transplanting Schwann cells — glial cells that help myelinate axons in the PNS — into the spinal cord after injury. These transplants supported regrowth of the damaged nerves in rats with spinal cord injury. Researchers are now studying human Schwann cells to determine if this technique will work in humans. Another way of encouraging regeneration is to implant fetal tissue. Tissue from a growing fetus contains stem cells, progenitor cells, and many substances that support growth. Such tissue also presents fewer obstacles to growing axons. Stem cells can differentiate into several cell types, depending on the signals they receive. Transplanting them into the spinal cord may, with the right chemical signals, help them develop into neurons and supporting cells in the spinal cord, re-establishing lost circuits. Studies in rats show that fetal transplants promote survival and regrowth of some damaged nerve cells. Transplanting fetal CNS tissue into the spinal
Guidelines 39
cord of both mature and newborn rats yielded axon growth that terminated within a few millimeters of the border of the transplant. Researchers still need to learn exactly how fetal tissue transplants promote nerve regrowth. The transplants appear to “rescue” axons and provide a bridge across which regenerating axons can grow. While both adult and newborn rats regrew descending nerve fibers from the brain, the growth of descending pathways into the transplants was substantially greater in the newborns. This suggests that other changes in the maturing CNS, such as the production of inhibitory factors or a loss of certain axon guidance molecules, may influence axonal regrowth after injury.
Trophic Factors Using insights from retina and culture experiments, researchers are beginning to test whether trophic factors can enhance regrowth in the spinal cords of rats. Growth factors may be responsible for much of the nerve regeneration normally seen in the PNS and in CNS axons near transplanted PNS tissue. Different pathways in the spinal cord may require particular combinations of growth factors for survival after injury. While nerve cells usually do not survive after axons have been severed close to the cell body, recent experiments in the rat spinal cord have shown that two trophic factors, brain-derived neurotrophic factor (BDNF) and neurotrophin 3 (NT3), can rescue nerve cells from which the axons have been recently severed. Although NT3 has short-term effects, BDNF can help nerve cells survive for 4 weeks or more after injury. When the trophic factors BDNF, NT3, and NT4 (neurotrophin 4) were combined with fetal tissue transplants, axons no longer stopped growing at the border of the transplant but instead greatly expanded the territory into which they projected. The combination of transplants and trophic factors also led to an increase in c-jun, an important immediate early gene. Immediate early genes respond rapidly to many stimuli and regulate many cell functions. Interestingly, these experiments showed that axons from cells that use the neurotransmitter serotonin responded to trophic factors more vigorously than axons from cells that use other neurotransmitters. This illustrates the importance of finding the right combination of growth factors for each type of cell.
40 Spinal Cord Injury
Anti-Inhibitory Factors Myelin-associated neurite growth inhibitor, which is produced by oligodendrocytes, is the most important CNS growth inhibitor so far identified. When researchers blocked this growth inhibitor with an antibody called IN-1, which binds to and masks the factor from growth cones, severed axons began extending past the oligodendrocytes and reconnecting with their targets. After this treatment, rats with severed spinal cords moved more normally and partially regained their contact-placing reflexes (in which rats move their legs to support their bodies when they are placed against a surface).
Combination Therapies Evidence that combining some therapies may have an additive effect has prompted researchers to focus effort on finding a combination that will achieve regeneration. Some combination therapies recently tested in rats have shown exciting results. One approach used neurotrophin 3, fetal cell transplants, and IN-1, the antibody to myelin-associated neurite growth inhibitor. Rats treated with this approach showed faster and more extensive recovery after spinal cord injury than those given any single treatment alone. Their recovered reflexes disappeared after researchers destroyed the cerebral cortex, showing that the brain, rather than reorganization within the spinal cord, controlled the reflexes. Researchers still need to learn if this therapy can be a general approach or if specific nerve pathways have specific requirements for growth. They also need to carefully define the time windows for effective combination treatment. Another approach using nerve fiber transplantation combined with growth factors showed the first functional regeneration of completely transected rat spinal cords. Researchers carefully transplanted 18 pieces of peripheral nerves (one to three pieces for each of the normal nerve tracts) taken from the rats’ chests to “bridge” 5-millimeter gaps at the T8 segment of rats’ spinal cords. To evade inhibitory proteins from oligodendrocytes, the bridges routed regenerating axons away from white matter, where they would normally grow, and into gray matter. The researchers fixed the grafts in place with a glue based on a blood-clotting factor called fibrin. The glue also contained acidic fibroblastic growth factor, or aFGF, which enhances nerve fiber development. Finally, the scientists wired the vertebrae to keep the spine in place while the area healed.
Guidelines 41
After 3 weeks, rats that had received this type of graft began to recover function in their hind legs. Some of the treated rats regained some movement on both sides of their bodies, while others regained movement on only one side. The rats that recovered on both sides of their bodies eventually began partially supporting their weight with their hind limbs. They also displayed walking movements and contact-placing reflexes. The rats continued to improve gradually over the course of a year, though they never walked normally. Rats with bridges from white matter to other white matter, rats in which the fibrin glue had no aFGF, and rats that did not receive transplants did not recover any function over time. Anatomical studies of spinal cords from rats that recovered function after this therapy showed that the nerve fibers grew into the gray matter on the opposite side of the gap. The fibers then grew at the interface between the gray matter and the white matter, an area that corresponds to the normal corticospinal tract in rats. The degree of recovery corresponded significantly to the degree of motor fiber regeneration.
Conclusion Basic research has led to a better understanding of trophic factors, growth barriers in the CNS, and the intrinsic capacity of nerve cells to grow. These insights are being applied in animal models of spinal cord injury using transplantation, trophic factors, and anti-inhibitory molecules. The exciting results of strategies that combine these interventions suggest that such approaches will ultimately prove the most successful for regenerating spinal cord pathways in humans. Developmental studies of cell specialization, axon growth and pathfinding, and synapse formation are leading to promising new avenues for improving on these combination approaches.
Current Interventions While the possibilities for new therapies deserve much attention, research also may be able to improve existing strategies, including drug therapy, neural prostheses, and rehabilitation.
Drug Therapy Effective drug therapy for spinal cord injury first became a reality in 1990, when methylprednisolone, the first drug shown to improve recovery from
42 Spinal Cord Injury
spinal cord injury, moved from clinical trials to standard use. The NASCIS II (National Acute Spinal Cord Injury Study II) trial, a multicenter clinical trial comparing methylprednisolone to placebo and to the drug naloxone, showed that methylprednisolone given within 8 hours after injury significantly improves recovery in humans. Completely paralyzed patients given methylprednisolone recovered an average of about 20 percent of their lost motor function, compared to 8 percent recovery of function in untreated patients. Paretic (partially paralyzed) patients recovered an average of 75 percent of their function, compared to 59 percent in people who did not receive the drug. Patients treated with naloxone, or treated with methylprednisolone more than 8 hours after injury, did not improve significantly more than patients given a placebo. The successful clinical trial of methylprednisolone revolutionized thinking in the medical community. The trial showed conclusively that there is a window of opportunity for acute treatment of spinal cord injury. Some doctors are now using this idea to guide surgical treatment as well as drug therapy. Today, most patients with spinal cord injuries receive methylprednisolone within 3 hours after injury, especially if the injury is severe. This shows that emergency rooms and acute care facilities are aware of the drug’s value and are capable of providing rapid treatment for spinal cord trauma. Success in delivering this drug on a widespread basis shows that health care systems are capable of providing rapid treatment. The NASCIS II trial also proves that well-designed trials of acute therapies for spinal cord injury are feasible and provides a model for testing other interventions. Other drugs are now being tested in clinical trials. A recently completed trial suggested that 48-hour regimen of methylprednisolone may be warranted in some patients. Preliminary clinical trials of another agent, GM-1 ganglioside, have shown that it is useful in preventing secondary damage in acute spinal cord injury, and other studies suggest that it may also improve neurological recovery from spinal cord injury during rehabilitation. Neural Prostheses While it may eventually become possible to help injured spinal cords regrow their connections, another approach is to compensate for lost function by using neural prostheses to circumvent the damage. These sophisticated electrical and mechanical devices connect with the nervous system to supplement or replace lost motor and sensory functions. Neural prostheses for deafness, known as cochlear implants, are now in widespread use in
Guidelines 43
humans and have had a dramatic impact on the lives of some people. The first prostheses for spinal cord injured patients are now being tested in humans. One device, a neural prosthesis that allows rudimentary hand control, was recently approved by the United States Food and Drug Administration (FDA). This prosthesis has been experimentally implanted in more than 60 people. Patients control the device using shoulder muscles. With training, most patients with this device can open and close their hand in two different grasping movements and lock the grasp in place by moving their shoulder in different ways. These simple movements allow the patients to perform many activities of daily life that they would otherwise be unable to perform, such as using silverware, pouring a drink, answering a telephone, and writing a note. Neural prostheses are complex and contain many intricate components, such as implantable stimulators, electrodes, leads and connectors, sensors, and programming systems. There are many technical considerations in selecting each component. The electronic components must be as small as possible. Biocompatibility between electrodes and body tissue is also necessary to prevent the person from being harmed by contact with the device and to prevent the device from being harmed by contact with the person. Other challenges include finding ways to safely send currents into the body, to reliably record neural activity, and to cope with changes in muscle properties due to the injury. Neural prostheses also must be evaluated for usefulness and long-term safety. Although many years of intensive study have contributed to the development of the prostheses now being tested, they are really the first generation of useful devices. Better materials and enhanced technology can refine these devices to provide much better function. Among the recent technical advances are extremely small probes that fit 16 electrodes on a shaft finer than a human hair. Integrated into a neural prosthesis, this type of electrode could provide extremely selective stimulation within the CNS, allowing the patient much more refined muscle control and a greater range of function. Future clinical development may allow easier, faster, and more natural movements; improve the longevity and reliability of components; and eliminate external cabling systems and external mounting of sensors. Further research to improve components and increase understanding of brain circuits may yield prostheses that can provide sensory information to the brain. This will improve both the safety of the devices and the patient’s performance of tasks. Devices now being developed may eventually enable people with spinal cord injury to stand unassisted and to use signals from the brain, instead of muscles, to control movement. Other types of neural prostheses currently being developed around the world aim to improve
44 Spinal Cord Injury
respiratory functions, bladder control, and fecal continence. Ultimately, researchers may be able to harness reflexes or the innate pattern-generating abilities of the spinal cord’s central pattern generators to help people with spinal cord injuries walk.
Rehabilitation Rehabilitation techniques can greatly improve patients’ health and quality of life by helping them learn to use their remaining abilities. Studies of problems that spinal cord injury patients experience, such as spasticity, muscle weakness, and impaired motor coordination, are leading to new strategies that may overcome these challenges. As they gain a better understanding of what causes these problems, physicians are learning how to treat them, sometimes using drugs already available for other health problems. Spasticity, in which abnormal stretch reflexes intensify muscle resistance to passive movements, often develops after spinal cord injury. Several factors may contribute to spasticity. Changes in the strength of connections between neurons or in the neurons themselves may alter the threshold of the stretch reflex. Spinal cord injury also may release one type of interneurons from control by a class of neurotransmitters that includes serotonin and norepinephrine. This change in the balance of neurotransmitters may increase these neurons’ excitability and enhance stretch reflexes. Drugs that mimic serotonin can partially restore reflexes, a finding that supports this neurotransmitter theory. Another possible cause of spasticity is that the reactions of pressure receptors in the skin may become stronger, causing muscle spasms that may grow stronger with time. Interneurons activated by NMDA receptors also may contribute to spasticity. NMDA receptors probably help adjust the strength of connections in the brain during learning. Researchers have found that a class of drugs that blocks NMDA receptors can restore stretch reflexes to almost normal strength. The muscle weakness that frequently occurs after spinal cord injury may result from a loss of excitatory signals from the descending tracts. Abnormal patterns of motor activation in muscles may also contribute by making muscles less efficient so that they tire more easily. Loss of serotonin and related neurotransmitters may disrupt the process that controls how much each nerve cell’s activity increases with increasingly strong stimuli. Restoring normal neurotransmitter signals with drugs may partially relieve these problems. Some muscle weakness may also result from abnormal
Guidelines 45
patterns of muscle usage or from changes in muscle properties, including muscular atrophy and growth of connective tissue. Scientists believe another common motor problem, muscle incoordination, may result in part from the substantial brain reorganization that occurs after injury to the CNS. With a better understanding of how the spinal cord changes following injury, researchers may be able to use drugs or physical therapy to promote reorganization when it is useful and block it when it is harmful. Rehabilitation strategies will continue to play an important role in the management of spinal cord injury, and they will increase in importance as the ultimate goal of functional spinal cord regeneration is realized. Studies in animals with spinal cord injuries have shown that recovery of movement is linked to the type of training the animals receive. Physical therapy and other rehabilitation strategies also are crucial for maintaining flexibility and muscle strength and for reorganizing the nervous system. These factors will be vital to recovering movement following regeneration as well as maximizing the use of undamaged nerve fibers.
Conclusion Therapies for spinal cord injury have improved substantially in the last few years. Drugs for treatment of acute injury, neural prostheses, and advanced rehabilitation strategies are improving the survival and quality of life for many patients. However, there are still many opportunities for improvement. These include finding ways to build on CNS reorganization and comparing the usefulness of different rehabilitation strategies. Investigators must also develop improved animal models for spinal cord injury to allow testing of new or improved therapies.
Pre-Clinical and Clinical Testing of New Therapies Researchers have identified a wide variety of potential therapies for spinal cord injury. To efficiently evaluate these therapies, however, investigators need to carry out well-designed preclinical and clinical trials that will reveal the benefits and drawbacks of each strategy.
46 Spinal Cord Injury
Pre-Clinical Testing Each of the factors contributing to secondary damage presents opportunities for therapeutic intervention. Among these are neuroprotective drugs that might be combined with or even replace methylprednisolone. These drugs include antioxidants, calcium blockers, and drugs that control excitotoxicity. Drugs that enhance axon signaling, such as 4-aminopyridine, form another category of potential therapies. Drugs designed to promote regeneration by capitalizing on newfound knowledge about guidance molecules, trophic factors, and growth-inhibiting substances make up a third class. Other kinds of interventions, such as transplantation, peripheral nerve grafts, hypothermia (cooling), and combinations of therapies also show promise in regrowing spinal cord tracts and promoting recovery of function. While all of these potential therapies appear promising, not all are at the same stage of development. Some neuroprotective drugs, including certain antioxidants and antiexcitotoxic drugs, are already being tested in humans for other purposes. Recently discovered molecules, such as those that control axon guidance, will require a great deal of basic and applied research before they can be developed into useful drugs. With so many potential therapies for spinal cord injury, investigators must carry out efficient preclinical tests to ensure that the most effective therapies proceed as rapidly as possible to clinical trials and, ultimately, to proven safety and usefulness. New animal models and better ways to monitor the success of treatments are essential to this process.
Clinical Trials Randomized, controlled human clinical trials are the “gold standard” for revealing the benefits and drawbacks of a therapy. However, such trials are usually very expensive, and they are unlikely to yield useful results without adequate preclinical study. Clinical trials that do not yield clear answers are an enormous waste of resources. Physicians conducting clinical trials also must ensure that they do no harm to the patients in their study. The Belmont report of 1978, which guides human medical research ethics in the United States, reaffirmed that the rights of individuals participating in clinical trials must take precedence over the potential benefit to society as a whole. This restricts randomized trials to those therapies that have shown potential usefulness in systematic preclinical studies. Only with good preclinical data can researchers predict which treatment regimens might be useful and whether new therapies can be combined with standard therapy.
Guidelines 47
A clinical trial involves hundreds of components, all of which are important to its success. Seven components essential to a good trial include the rationale, or reasons the trial should be carried out; the design, which should compare different therapies (or therapy and placebo); the inclusion and exclusion criteria determining which patients should enter the trial; the use of randomization or bias control measures; the number of patients to be tested in order to produce clear results; carefully defined outcome events (that is, measures of how well patients recover); and the analysis of the data. For a clinical trial to be justified, physicians should ideally be in a state of “equipoise” in which they are not sure whether a treatment works or not. If they are certain a treatment works, it is unethical to withhold it from patients. Yet, without a reasonable expectation that patients will benefit, it is difficult to justify the risks. There are three phases of systematic clinical testing in the United States. Phase I trials determine the criteria for safe and effective use of the therapy. These trials usually involve small numbers of patients and test the therapy in a range of doses. It is important to make this phase as extensive as necessary to eliminate unknown factors that can confound the results of later, more expensive phase II and III trials. Phase II trials establish whether the therapy, at safe and optimal doses, works for the disease. These trials should also help define factors such as which patients might benefit from the therapy. Finally, Phase III trials compare the new therapies to other therapies and/or to placebo. These trials are usually very large, as they must involve enough patients to reasonably show the drug’s benefits and potential adverse reactions. A company must obtain phase III data before applying for FDA approval of a new drug. The NASCIS trial that established the benefits of methylprednisolone is a model of an efficient phase III clinical trial for spinal cord therapy. This efficiency resulted from the trial’s design, which used one placebo control group compared to two therapies: methylprednisolone and naloxone. This design made optimal use of resources, with a minimal number of patients given placebo. The NASCIS II trial also revealed that most patients improve somewhat, regardless of whether or not they receive methylprednisolone — knowledge that is important for designing future clinical studies. Because methylprednisolone reduces disability, clinical trials can no longer use placebo controls because it would be unethical to withhold the drug from patients. Instead, new therapies must be compared to methylprednisolone, the best standard therapy. A special problem in testing therapies for spinal cord injury is that most studies thus far have found combination therapies to be the most effective
48 Spinal Cord Injury
strategies. The need to test several therapies together complicates and can confound traditional clinical trial strategies. Investigators must find effective ways to deal with this problem to test many of the promising therapies for spinal cord injury. Researchers have identified a wide variety of potential therapies for spinal cord injury. To efficiently evaluate these therapies, however, investigators need to carry out well-designed, preclinical and clinical studies. Key elements include cooperation between multiple independent research centers, strategic trial design, and well-defined criteria for selecting potential therapies to be tested. The success of the methylprednisolone trial and advances from the basic science realm have stimulated the pace of research on treating spinal cord injury. With properly designed trials, potential therapies can be efficiently tested so they can help people with spinal cord injuries as soon as possible.
Conclusion Spinal cord injury research has now come of age. Because of general progress in neuroscience, as well as specific advances in spinal cord injury research, researchers can test new ideas about how changes in molecules, cells, and their complex interactions in the living body determine the outcome of spinal cord injury. Scientists are learning, for example, how processes such as oxidative damage, excitotoxicity, and apoptosis contribute to spinal cord injury and how this damage might be minimized. Inspired by demonstrations that spinal cord nerve cells can regrow, researchers are learning to manipulate trophic factors, intrinsic growth programs, and growth inhibitors to encourage regeneration. One of the most exciting aspects of the workshop was the potential for applying findings from other fields, such as development, immunology, and stroke research, to spinal cord injury. There is increasing recognition that similar processes contribute to a diverse range of neurological disorders, including spinal cord injury, stroke, brain trauma, and neurodegenerative diseases. New insights about how the nervous system develops are also suggesting ways to encourage regeneration. Researchers may debate how directly these insights will apply to the adult spinal cord, but they agree that testing these hypotheses in animal models of spinal cord injury ultimately will lead to better treatments.
Guidelines 49
Overcoming spinal cord injuries will require general progress in many fields of neuroscience as well as specific studies in animal models of spinal cord injury and in patients themselves. Key areas for research include: ·
Secondary damage and intrinsic repair processes, including oxidative damage, excitotoxicity, calcium-mediated damage, proteases, apoptosis, immune responses, stem cells, and plasticity and reorganization.
·
Development and regeneration, including trophic factors, axonal pathfinding, growth inhibitors, and synapse formation.
·
Applied studies in animal models of spinal cord injury, including tests of trophic factors and grafting and transplantation strategies.
·
Clinical research in human patients, including studies to describe anatomical and functional changes that follow spinal cord injury, to refine existing supportive and rehabilitation therapies such as neural prostheses, and to test new therapies that emerge from basic and applied research.
Researchers are wary of giving people false hopes that a magic bullet for curing spinal cord injury is just around the corner. However, with accelerating progress in scientific research, there is renewed vitality and growing optimism that, with continued effort, the problems of spinal cord injury will be overcome.
More Guideline Sources The guideline above on spinal cord injury is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to spinal cord injury. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with spinal cord injury. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patient-
50 Spinal Cord Injury
oriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.
The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on spinal cord injury and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·
Incontinence: Patient Education Source: Tarrytown, NY: Bayer Corporation. 1999. 11 p. Contact: Available from Bayer Corporation. Diagnostics Division, 511 Benedict Avenue, Tarrytown, NY 10591-5097. (800) 445-5901. Price: Single copy free. Summary: This patient education brochure reviews urinary incontinence, involuntary or unwanted leakage of urine. The brochure defines the condition, describes risk factors and causes, outlines the diagnostic approaches that may be used, reviews treatment options, and offers suggestions for prevention. The brochure first reviews the anatomy of the male and female urinary tract, noting that women are twice as likely as men to experience urinary incontinence. Incontinence occurs when there are problems with the muscles or nerves of the urinary system. Both men and women can become incontinent as a result of strokes, multiple sclerosis, diabetes, or other underlying health conditions; incontinence is
Guidelines 51
not an inevitable part of aging, however. Urinary leakage associated with coughing, sneezing, or laughing is called stress urinary incontinence (SUI); causes of SUI include heavy lifting, previous surgery, spinal cord injury, a lack of estrogen, and pregnancy. Urge incontinence is associated with a feeling of lower abdominal pressure and a difficulty in delaying urination; this is usually caused by a spasm of the bladder muscle (detrusor). The brochure stresses that almost all cases of incontinence can be controlled or cured. Exercises specifically designed to strengthen the urinary muscles are called Kegel exercises; the brochure explains how to perform the exercises and how they can be used to help restore bladder control, particularly after pregnancy. Other treatment options include behavior modification and some medications. Readers are encouraged to first consider all nonsurgical treatments; if they do not cure the incontinence, the health care provider may evaluate the patient for surgery. The brochure concludes with a brief glossary of terms and a short list of resources for readers wishing to obtain additional information. A tear-off section lists the topics covered in the booklet; readers are encouraged to check off the items corresponding to issues they would like to discuss with their health care provider, to use the checklist as a reminder tool. 3 figures. ·
Bladder Management Source: Seattle, WA: Northwest Regional Spinal Cord Injury System. 1998. [3 p.]. Contact: Available from Northwest Regional Spinal Cord Injury System (NW Regional SCI System), University of Washington Department of Rehabilitation Medicine. P.O. Box 356490, Seattle, WA 98195-6490. (206) 543-3600. E-mail:
[email protected]. Website: http://weber.u.washington.edu/~rehab/. Summary: This fact sheet offers bladder management strategies for people with spinal cord injuries. The fact sheet first describes the five major parts of the urinary system: the kidneys, the ureters, the bladder, the sphincter muscles, and the urethra; an illustration shows the placement of each part. The fact sheet then discusses voiding (urination), how it is normally accomplished, and how it changes after spinal cord injury. The author describes two possible conditions that may result from spinal cord injury: flaccid (floppy) bladder, which does not contract for emptying; and reflex (hyperactive) bladder, which may contract automatically, causing incontinence (accidental voiding). The fact sheet then outlines the strategies of bladder management for this population, including the Foley or suprapubic catheter, intermittent self-
52 Spinal Cord Injury
catheterization, spontaneous voiding, stimulated voiding, and surgical alternatives. 1 figure. ·
Florida Head and Spinal Cord Injury Program Source: Pompano Beach, FL: National Head Injury Foundation, Florida Association. n.d. 10 pp. Contact: Available from North Broward Medical Center, National Head Injury Foundation, Florida Association, 201 East Sample Road, Pompano Beach, FL 33064. Telephone: (305) 786-2400. Summary: This brochure provides an overview of the Head and Spinal Cord Injury (HSCI) Program in Florida, which provides all eligible residents who sustain a head or spinal cord injury equal opportunity to obtain the services they need to return to an appropriate level of functioning in their community. It includes a description of the services provided by the program, eligibility requirements, information on how the program is administered and funded, and contact information.
·
DECOD (Dental Education in Care of Persons with Disabilities) Distance Learning Unit Source: Seattle, WA: Dental Education in Care of Persons with Disabilities (DECOD), University of Washington. 1996. 8 p. Contact: Available from Dental Education in Care of Persons with Disabilities (DECOD). Continuing Dental Education, Box 357137, University of Washington, Seattle, WA 98195-6370. (206) 543-5448. Fax (206) 685-3164. Price: Single copy free. Summary: This brochure describes two components of the Dental Education in Care of Persons with Disabilities (DECOD) Distance Learning Unit: the video lecture series and the self-instructional modules series. Videos cover wheelchair transfer; organizing a mobile dental practice; oral medicine problems in patients with disabilities; a behavioral perspective on chronic orofacial pain; HIV-AIDS overview; the management of renal dialysis and renal transplant patients; the use of sedation in patients with developmentally disabilities; swallowing and oral-pharyngeal dysphagia; patients with stroke; medical emergencies in the dental office; dental-nutrition concerns of older adults; the aging mouth; the behavioral management of medically compromised children; spinal cord injury and traumatic head injury; the cultural aspects of deafness; oral health issues in rehabilitation, including access to dental care; oral care for persons with psychiatric disorders; adaptive devices; building interdisciplinary communication; oral hygiene for persons with developmental disability; patients with blindness or visual impairments;
Guidelines 53
and the psychological and social issues of disability. The SelfInstructional modules cover the rehabilitation of, dental treatment of, and dental prevention for patients with developmental disabilities; medically compromised patients in dental practice; anxiety and pain control for dental patients with disabilities; clinical assessment of this population; dental treatment of patients with major psychiatric disorders, of patients with chemical dependencies, of patients with CNS and neurologic impairment, and of geriatric patients; the management of medical emergencies in this population; and the oral health care of persons with disabilities. ·
Information Package: Resource Center on Substance Abuse Prevention and Disability Source: Washington, D.C.: Resource Center on Substance Abuse Prevention and Disability. 1993. (information package). Contact: Available from Resource Center on Substance Abuse Prevention and Disability. 1819 L Street, N.W., Suite 300, Washington, D.C. 20036. Voice (800) 628-8442 or (202) 628-8080; TTY (202) 628-3812; Fax (202) 6283812. Price: Single copy free. Summary: This information packet is designed for those working in the field of alcohol and other drug abuse services, as well as for those involved in the disability and rehabilitation fields. The packet includes fact sheets on alcohol and drug abuse prevention, the Americans With Disabilities Act, attention deficit disorders, blindness and visual impairments, deafness and hearing loss, hidden disabilities, learning disabilities, mental illness, mental retardation, mobility limitations, spinal cord injury, traumatic brain injury, disability and enabling, disability and the family, disability and health implications, and service delivery settings. Each fact sheet lists truths and myths about the subject, provides information about resource organizations and publications, and includes references. An order form for additional copies of the fact sheets is also included.
The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “spinal cord injury” or synonyms. The following was recently posted:
54 Spinal Cord Injury
·
Acute management of autonomic dysreflexia: individuals with spinal cord injury presenting to health-care facilities. Source: Paralyzed Veterans of America/Consortium for Spinal Cord Medicine.; 1997 February (updated 2001 Jul); 29 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 2190&sSearch_string=Spinal+Cord+Injury
·
Depression following spinal cord injury. A clinical practice guideline for primary care physicians. Source: Paralyzed Veterans of America/Consortium for Spinal Cord Medicine.; 1998; 35 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 0903&sSearch_string=Spinal+Cord+Injury
·
Neurogenic bowel management in adults with spinal cord injury. Source: Paralyzed Veterans of America/Consortium for Spinal Cord Medicine.; 1998 March; 39 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 0394&sSearch_string=Spinal+Cord+Injury
·
Outcomes following traumatic spinal cord injury. Source: Paralyzed Veterans of America/Consortium for Spinal Cord Medicine.; 1999 July; 32 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1814&sSearch_string=Spinal+Cord+Injury
·
Pressure ulcer prevention and treatment following spinal cord injury. Source: Paralyzed Veterans of America/Consortium for Spinal Cord Medicine.; 2000 August; 80 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1815&sSearch_string=Spinal+Cord+Injury
Guidelines 55
·
Prevention of thromboembolism in spinal cord injury. Source: Paralyzed Veterans of America/Consortium for Spinal Cord Medicine.; 1997 February (updated 1999 Sep); 29 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 2191&sSearch_string=Spinal+Cord+Injury
The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to spinal cord injury. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.
Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
·
Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
·
Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
56 Spinal Cord Injury
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Abdominal: Pertaining to the abdomen. [EU] Acetylcholine: A neurotransmitter. Acetylcholine in vertebrates is the major transmitter at neuromuscular junctions, autonomic ganglia, parasympathetic effector junctions, a subset of sympathetic effector junctions, and at many sites in the central nervous system. It is generally not used as an administered drug because it is broken down very rapidly by cholinesterases, but it is useful in some ophthalmological applications. [NIH] Agrin: A protein component of the synaptic basal lamina. It has been shown to induce clustering of acetylcholine receptors on the surface of muscle fibers and other synaptic molecules in both synapse regeneration and development. [NIH] Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Autonomic: Self-controlling; functionally independent. [EU] Autopsy: Postmortem examination of the body. [NIH] Axons: Nerve fibers that are capable of rapidly conducting impulses away from the neuron cell body. [NIH]
Guidelines 57
Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Calpain: Cysteine proteinase found in many tissues. Hydrolyzes a variety of endogenous proteins including neuropeptides, cytoskeletal proteins, proteins from smooth muscle, cardiac muscle, liver, platelets and erythrocytes. Two subclasses having high and low calcium sensitivity are known. Removes Z-discs and M-lines from myofibrils. Activates phosphorylase kinase and cyclic nucleotide-independent protein kinase. [NIH] Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU]
Catheterization: The employment or passage of a catheter. [EU] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Chronic: Persisting over a long period of time. [EU] Cochlear: Of or pertaining to the cochlea. [EU] Collapse: 1. a state of extreme prostration and depression, with failure of circulation. 2. abnormal falling in of the walls of any part of organ. [EU] Contusion: A bruise; an injury of a part without a break in the skin. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cues: Signals for an action; that specific portion of a perceptual field or pattern of stimuli to which a subject has learned to respond. [NIH] Cyclic: Pertaining to or occurring in a cycle or cycles; the term is applied to chemical compounds that contain a ring of atoms in the nucleus. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Cytoskeleton: The network of filaments, tubules, and interconnecting filamentous bridges which give shape, structure, and organization to the cytoplasm. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause
58 Spinal Cord Injury
degeneration. [EU] Dendrites: Extensions of the nerve cell body. They are short and branched and receive stimuli from other neurons. [NIH] Deprivation: Loss or absence of parts, organs, powers, or things that are needed. [EU] Dorsal: 1. pertaining to the back or to any dorsum. 2. denoting a position more toward the back surface than some other object of reference; same as posterior in human anatomy; superior in the anatomy of quadrupeds. [EU] Dysphagia: Difficulty in swallowing. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Extracellular: Outside a cell or cells. [EU] Fibrin: The insoluble protein formed from fibrinogen by the proteolytic action of thrombin during normal clotting of blood. Fibrin forms the essential portion of the blood clot. [EU] Flaccid: Weak, lax and soft. [EU] Forskolin: Potent activator of the adenylate cyclase system and biosynthesis of cyclic AMP. From the plant Coleus forskohlii. antihypertensive, positive ionotropic, platelet aggregation inhibitory, smooth muscle relaxant activities; also lowers intraocular pressure promotes release of hormones from the pituitary gland. [NIH]
the Has and and
Ganglion: 1. a knot, or knotlike mass. 2. a general term for a group of nerve cell bodies located outside the central nervous system; occasionally applied to certain nuclear groups within the brain or spinal cord, e.g. basal ganglia. 3. a benign cystic tumour occurring on a aponeurosis or tendon, as in the wrist or dorsum of the foot; it consists of a thin fibrous capsule enclosing a clear mucinous fluid. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to
Guidelines 59
glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Groin: The external junctural region between the lower part of the abdomen and the thigh. [NIH] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hydrogen: Hydrogen. The first chemical element in the periodic table. It has the atomic symbol H, atomic number 1, and atomic weight 1. It exists, under normal conditions, as a colorless, odorless, tasteless, diatomic gas. Hydrogen ions are protons. Besides the common H1 isotope, hydrogen exists as the stable isotope deuterium and the unstable, radioactive isotope tritium. [NIH] Hypothermia: A low body temperature, as that due to exposure in cold weather or a state of low temperature of the body induced as a means of decreasing metabolism of tissues and thereby the need for oxygen, as used in various surgical procedures, especially on the heart, or in an excised organ being preserved for transplantation. [EU] Incontinence: Inability to control excretory functions, as defecation (faecal i.) or urination (urinary i.). [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Interneurons: Most generally any neurons which are not motor or sensory. Interneurons may also refer to neurons whose axons remain within a particular brain region as contrasted with projection neurons which have axons projecting to other brain regions. [NIH] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Irrigation: Washing by a stream of water or other fluid. [EU] Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU] Laceration: 1. the act of tearing. 2. a torn, ragged, mangled wound. [EU] Lesion: Any pathological or traumatic discontinuity of tissue or loss of
60 Spinal Cord Injury
function of a part. [EU] Locomotion: Movement or the ability to move from one place or another. It can refer to humans, vertebrate or invertebrate animals, and microorganisms. [NIH] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Monocytes: Large, phagocytic mononuclear leukocytes produced in the vertebrate bone marrow and released into the blood; contain a large, oval or somewhat indented nucleus surrounded by voluminous cytoplasm and numerous organelles. [NIH] Morale: The prevailing temper or spirit of an individual or group in relation to the tasks or functions which are expected. [NIH] Naloxone: A specific opiate antagonist that has no agonist activity. It is a competitive antagonist at mu, delta, and kappa opioid receptors. [NIH] Necrosis: The sum of the morphological changes indicative of cell death and caused by the progressive degradative action of enzymes; it may affect groups of cells or part of a structure or an organ. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuromuscular: Pertaining to muscles and nerves. [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Neutrophil: Having an affinity for neutral dyes. [EU] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal
Guidelines 61
medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used pharmacologically as a sympathomimetic. [NIH] Notochord: The rod-shaped body, composed of cells derived from the mesoblast and defining the primitive axis of the embryo. In lower vertebrates, it persists throughout life as the main axial support of the body, but in higher vertebrates it is replaced by the vertebral column. [NIH] Orofacial: Of or relating to the mouth and face. [EU] Oxidation: The act of oxidizing or state of being oxidized. Chemically it consists in the increase of positive charges on an atom or the loss of negative charges. Most biological oxidations are accomplished by the removal of a pair of hydrogen atoms (dehydrogenation) from a molecule. Such oxidations must be accompanied by reduction of an acceptor molecule. Univalent o. indicates loss of one electron; divalent o., the loss of two electrons. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Perivascular: Situated around a vessel. [EU] Preclinical: Before a disease becomes clinically recognizable. [EU] Prosthesis: An artificial substitute for a missing body part, such as an arm or leg, eye or tooth, used for functional or cosmetic reasons, or both. [EU] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Pupil: The aperture in the iris through which light passes. [NIH] Quiescent: Marked by a state of inactivity or repose. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various
62 Spinal Cord Injury
kinds. [EU] Regeneration: The natural renewal of a structure, as of a lost tissue or part. [EU]
Reperfusion: Restoration of blood supply to tissue which is ischemic due to decrease in normal blood supply. The decrease may result from any source including atherosclerotic obstruction, narrowing of the artery, or surgical clamping. It is primarily a procedure for treating infarction or other ischemia, by enabling viable ischemic tissue to recover, thus limiting further necrosis. However, it is thought that reperfusion can itself further damage the ischemic tissue, causing reperfusion injury. [NIH] Resuscitation: The restoration to life or consciousness of one apparently dead; it includes such measures as artificial respiration and cardiac massage. [EU]
Retina: The ten-layered nervous tissue membrane of the eye. It is continuous with the optic nerve and receives images of external objects and transmits visual impulses to the brain. Its outer surface is in contact with the choroid and the inner surface with the vitreous body. The outer-most layer is pigmented, whereas the inner nine layers are transparent. [NIH] Retraction: 1. the act of drawing back; the condition of being drawn back. 2. distal movement of teeth, usually accomplished with an orthodontic appliance. [EU] Retrograde: 1. moving backward or against the usual direction of flow. 2. degenerating, deteriorating, or catabolic. [EU] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Skeletal: Pertaining to the skeleton. [EU] Sneezing: Sudden, forceful, involuntary expulsion of air from the nose and mouth caused by irritation to the mucous membranes of the upper respiratory tract. [NIH] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Species: A taxonomic category subordinate to a genus (or subgenus) and superior to a subspecies or variety, composed of individuals possessing common characters distinguishing them from other categories of individuals of the same taxonomic level. In taxonomic nomenclature, species are designated by the genus name followed by a Latin or Latinized adjective or noun. [EU] Sphincter: A ringlike band of muscle fibres that constricts a passage or
Guidelines 63
closes a natural orifice; called also musculus sphincter. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Superoxides: Highly reactive compounds produced when oxygen is reduced by a single electron. In biological systems, they may be generated during the normal catalytic function of a number of enzymes and during the oxidation of hemoglobin to methemoglobin. In living organisms, superoxide dismutase protects the cell from the deleterious effects of superoxide. [NIH] Thoracic: Pertaining to or affecting the chest. [EU] Thromboembolism: Obstruction of a blood vessel with thrombotic material carried by the blood stream from the site of origin to plug another vessel. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]
Toxic: Pertaining to, due to, or of the nature of a poison or toxin; manifesting the symptoms of severe infection. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Ulcer: A local defect, or excavation, of the surface of an organ or tissue; which is produced by the sloughing of inflammatory necrotic tissue. [EU] Ureter: One of a pair of thick-walled tubes that transports urine from the kidney pelvis to the bladder. [NIH] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH]
Seeking Guidance 65
CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with spinal cord injury. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.8 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with spinal cord injury. The chapter ends with a discussion on how to find a doctor that is right for you.
Associations and Spinal Cord Injury As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.9 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 9 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 8
66 Spinal Cord Injury
influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·
American Paralysis Association Address: American Springfield, NJ 07081
Paralysis
Association
500
Morris
Avenue,
Telephone: (973) 379-2690 Toll-free: (800) 526-3456 Fax: (973) 912-9433 TollEmail:
[email protected] Web Site: http://www.apacure.com Background: The American Paralysis Association is a national not-forprofit research and self-help organization that was established in 1982. The mission of the Association is to encourage and support worldwide research activities designed to speed the progress toward a cure for paralysis caused by spinal cord injury and various central nervous system disorders. The Association has also provided seed money for innovative medical research studies that are largely responsible for recent breakthroughs in the prevention of spinal cord injury and its treatments. In addition, the Association sponsors international conferences on spinal injury, providing an important forum for the exchange of information among leaders in the field of spinal cord injury research. Educational materials produced by the organization include brochures, a publication called 'Progress in Research,' and a newsletter entitled 'Walking Tomorrow.'. Relevant area(s) of interest: Spinal Cord Injury ·
American Paraplegia Society Address: American Paraplegia Society 75-20 Astoria Boulevard, Jackson Heights, NY 11370-1177 Telephone: (718) 803-3782 Toll-free: (800) 237-5055 Fax: (718) 803-0414
Seeking Guidance 67
Relevant area(s) of interest: Spinal Cord Injury ·
American Spinal Injury Association Address: American Spinal Injury Association 345 East Superior, Room 1436, Chicago, IL 60611 Telephone: (312) 908-6207 Toll-free: (800) 237-5055 Fax: (312) 503-0869 Background: The American Spinal Injury Association is a multidisciplinary organization of health care professionals devoted to the care of individuals who have sustained a spinal cord injury (SCI). The mission of the association is to promote and establish standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life and to educate members, other health care professionals, patients, and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services, and maximize the injured individual's potential for full participation in all areas of community life. The Association is also dedicated to fostering research that aims at preventing spinal cord injury, improving care, reducing consequent disability, and finding a cure for both acute and chronic SCI and to facilitating communication between members and other physicians, other health care professionals, researchers, and consumers. Relevant area(s) of interest: Spinal Cord Injury
·
Back Pain Association of America, Inc Address: Back Pain Association of America, Inc. P.O. Box 135, Pasadena, MD 21123-0135 Telephone: (410) 255-3633 Toll-free: (800) 526-3456 Fax: (410) 255- 7338 Email:
[email protected] Background: The Back Pain Association of America, Inc. (BPAA) is a national nonprofit organization dedicated to providing information and support to people who are affected by back and neck pain, their family members, friends, and health care professionals. Established in 1991 and consisting of nearly 4,000 members, BPAA offers programs and information to help affected individuals learn more about their spinal disorders and ways to cope with them. The organization also has a program to help individuals prevent back injuries. BPAA publishes a self-titled quarterly newsletter that helps readers stay informed of
68 Spinal Cord Injury
updated information and new forms of treatment. The organization's 'Friends Across America' networking program enables affected individuals to exchange information and support via telephone. BPAA also has a physician referral service as well as an information service for physicians who treat back and neck pain. In addition, the Association also promotes research and offers a variety of fact sheets including 'The Relationship Between Nerve Damage and Leg Pain,' 'Urinary Problems and Diseases of the Spine,' 'Arachnoiditis, Questions and Answers,' and 'A Guide to Abdominal and Stretching Exercises.'. Relevant area(s) of interest: Reflex Sympathetic Dystrophy Syndrome, Spinal Cord Injury, Syringomyelia, Whiplash ·
Canadian Paraplegic Association Address: Canadian Paraplegic Association 1101 Prince of Wales Drive, Suite 230, Ottawa, Ontario, K2C 3W7, Canada Telephone: (613) 723-1033 Toll-free: (800) 424-8200 Fax: (613) 723-1060 Email:
[email protected] Web Site: http://www.canparaplegic.org/ Background: The Canadian Paraplegic Association (CPA) is a national not-for- profit federation of provincial organizations dedicated to helping individuals with spinal cord injuries or other mobility impairments achieve independence, self-reliance, and full community participation. Paralysis may result due to injury or disease of the spinal cord. Depending upon the location of the injury, the nature of the disease in question, or other factors, affected individuals may experience varying degrees of paralysis, loss of sensation, and, in some cases, loss of bowel and bladder control. The Canadian Paraplegic Association was founded in 1945 by a group of World War II veterans affected by paralysis. The Association currently has 10 provincial divisions and 47 regional offices and provides services to a membership of more than 30,000 Canadians affected by spinal cord injuries or other mobility impairments. The CPA's provincial offices provide a variety of programs and services including personal and family counseling; educational and vocational counseling; and employment counseling that provides assessment, job search, and follow-up services to support reentry into the workplace. Additional services include offering assistance with locating and adapting suitable housing, obtaining equipment and supplies necessary to support independent living, and planning for immediate and future financial needs. The Association also implements community advocacy programs that assist in identifying, reducing, and eliminating barriers to affected
Seeking Guidance 69
individuals' participation in the community. In addition, the Canadian Paraplegic Association offers a variety of educational resources including a brochure series on all aspects of spinal cord injuries; resource guides to assist facility planners and administrators in ensuring access for people with disabilities; an orientation and training program for professional counselors who work with clients affected by mobility impairments; a quarterly newsletter entitled 'Caliper' that reports on such areas as employment, education, technology, recreation, health, transportation, and accessibility; and other materials. The Association also maintains a web site on the Internet. Relevant area(s) of interest: Spinal Cord Injury ·
Citizens For Independence In Living And Breathing Address: Telephone: (416) 227-0623 Toll-free: (800) 342-0330 Fax: (416) 277-0623 Background: The Citizens For Independence In Living and Breathing (CILB) is a not-for-profit organization dedicated to promoting choice, control, and independence through education and information for both current and prospective ventilator users with neuromuscular disorders. CILB was established in 1988, when community action funding enabled the Canadian Paraplegic Association to investigate the needs of severely disabled individuals including ventilator users. CILB assists the community by providing information concerning the choice of independent living options available to individuals who are capable of directing their own services; publishing and disseminating information about living with a ventilator and alternative ventilation techniques; providing information about available community services, attendant services, health care, education, employment, and recreation; providing information regarding funding for the hiring and training of attendants; and assisting in the development of support networks for users, families, and others who require assistance. CILB consists of 65 active members who participate in various advisory committees and groups such as Ontario Ministries including Health, Community and Social Services, Housing, and Education and Citizenship; the Canadian Standards Association; and District Health Councils. Educational materials include pamphlets, CILB conference session tapes, and videotapes. Relevant area(s) of interest: Amyotrophic Lateral Sclerosis, Spinal Cord Injury
70 Spinal Cord Injury
·
Dana Alliance for Brain Initiatives Address: Dana Alliance for Brain Initiatives 745 Fifth Avenue, Suite 700, New York, NY 10151 Telephone: (212) 223-4040 Toll-free: (800) 526-3456 Fax: (212) 593-7623 Email:
[email protected] Web Site: http://www.dana.org Background: The Dana Alliance for Brain Initiatives, a nonprofit organization supported by the Charles A. Dana Foundation, was established as an alliance of neuroscientists dedicated to providing information and promoting understanding concerning the personal and public benefits of brain research. (The Charles A. Dana Foundation is a private philanthropic foundation with grant programs in health and education.) Established in 1993, the Dana Alliance for Brain Initiatives currently consists of more than 175 neuroscientists. Alliance members have set 10 main objectives in brain research that are considered obtainable by the Year 2000. These objectives include the identification of the genes that are defective in familial Alzheimer's and Huntington's diseases; identification of genes responsible for hereditary forms of manic- depressive illness; and development of new drugs and other measures to alleviate the effects of multiple sclerosis, Alzheimer's disease, Parkinson's disease, motor neuron disease such as Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease), and epilepsy. Many of the 10 objectives have been met, and significant progress is being made on all 10 objectives. According to the Alliance, approximately one in five Americans is affected by a brain disease or disorder, ranging from learning disabilities to Parkinson's Disease from epilepsy to spinal cord injuries. The Dana Alliance for Brain Initiatives is dedicated to answering questions concerning brain-related research and providing information concerning new developments. The Alliance offers a variety of periodicals, newsletters, reports, reference works, and books. The Dana Alliance and the Dana Foundation also have a web site on the Internet that provides information on current activities and services, describes the Dana Alliance's objectives, offers information concerning available publications, and provides comprehensive dynamic linkage through the Dana BrainWeb. The Dana BrainWeb recommends several Internet sites as helpful resources for individuals concerned about brain diseases and disorders. The Dana Foundation and Alliance web site is located at http://www.dana.org. Relevant area(s) of interest: Amyotrophic Lateral Sclerosis, Spinal Cord Injury
Seeking Guidance 71
·
Eastern Paralyzed Veterans Association Address: Eastern Paralyzed Veterans Association Boulevard, Jackson Heights, NY 11370-1177
75-20
Astoria
Telephone: (718) 803- 3782 Toll-free: (800) 444-0120 Fax: (718) 803-0414 Email:
[email protected] Web Site: http://www.epva.org Background: The Eastern Paralyzed Veterans Association (EPVA) is a not-for- profit organization dedicated to enhancing the lives of veterans with a spinal cord injury or disease. EPVA strives to assure quality health care, promote research, and advocate for civil rights and independence. Founded in 1946, EPVA has operated programs from benefits counseling to wheelchair sports, participated in drafting parts of the Americans with Disabilities Act (ADA) and the Fair Housing Amendments Act, and ensured compliance with these laws. EPVA's numerous programs include social services, wheelchair repair, architecture, library and information services, public affairs, benefits, government relations, legal affairs, and assistive technology programs. EPVA produces a variety of educational materials including brochures, pamphlets, booklets, reports, videos, and newsletters. Relevant area(s) of interest: Spinal Cord Injury ·
Foundation for Spinal Cord Injury Prevention Address: Foundation for Spinal Cord Injury Prevention 1310 Ford Building, Detroit, MI 48226 Telephone: (313) 963-1600 Toll-free: (800) 342-0330 Fax: (313) 963-1330 Background: The Foundation for Spinal Cord Injury Prevention (FSCIP) is a voluntary organization that promotes public awareness and prevention of spinal cord injuries from various causes. Founded in 1988, FSCIP disseminates information; shares information with other organizations; and creates public service and safety announcements on the prevention, treatment, rehabilitation, research, and overall physical, mental, and emotional effects of spinal cord injury. In addition, FSCIP facilitates a networking service for affected individuals. FSCIP is a member of the National Safety Council, the MRPA, and a number of other organizations that are interested in safety and the prevention of spinal cord injury. The organization produces several educational
72 Spinal Cord Injury
materials including 'Myths of Diving and Drowning,' 'No Diving Signs,' and 'Diving is Deadly.'. Relevant area(s) of interest: Spinal Cord Injury ·
Helping Hands: Monkey Helpers for the Disabled Address: Helping Telephone: (617) 787-4419 Toll-free: (800) 782-6387 Fax: (617) 787-5665 Email: None. Web Site: http://www.helpinghandsmonkeys.org Background: Helping Hands: Monkey Helpers for the Disabled is a national not- for-profit organization dedicated to training capuchin monkeys to assist severely disabled individuals. The monkeys are raised in a nationwide network of volunteer foster families as though they were human. At five years of age, young monkeys are mature enough to begin their training. Monkeys are then trained to accomplish the chores of everyday living including feeding, retrieving fallen objects, turning the lights on and off, and loading a floppy disk or videotape. At the end of the training phase, each monkey is placed with an individual who has lost the ability to use his or her limbs. Educational materials produced by Helping Hands include brochures and fact sheets detailing the program and its requirements. Relevant area(s) of interest: Spinal Cord Injury
·
Kent Waldrep National Paralysis Foundation Address: Kent Waldrep National Paralysis Foundation 16415 Addison Road, Suite 550, Dallas, TX 75248 Telephone: (972) 248-7100 Toll-free: (800) 925-2873 Fax: (972) 248-7313 Email:
[email protected] Web Site: http://www.kwnpf.org Background: The Kent Waldrep National Paralysis Foundation (NPF) is a not-for- profit organization dedicated to raising funds for research to find a cure for paralysis caused by brain injury, spinal cord injury, or stroke. Established in 1985, NPF provides funding to support a comprehensive paralysis research center at UT-Southwestern in Dallas; the Research Scholars Program to attract and train new scientists; Research Grant Programs to support leading edge research; the Medical Symposium
Seeking Guidance 73
Fund to support national and international medical education and information sharing programs; and community service activities for affected individuals to promote a better quality of life through education, employment, and recreational sports opportunities. The Foundation's educational materials include brochures and a regular newsletter. NPF also maintains a web site at http://www.kwnpf.org. Relevant area(s) of interest: Spinal Cord Injury ·
Miami Project to Cure Paralysis Address: Miami Project to Cure Paralysis University of Miami School of Medicine, P.O. Box 01690, Mail Locator R-48, Miami, FL 33136 Telephone: (305) 243-6001 Toll-free: (800) 782-6387 Fax: (305) 243-4427 Email:
[email protected] Web Site: http://www.miamiproject.miami.edu Background: The Miami Project to Cure Paralysis of the University of Miami School of Medicine is a nonprofit research center dedicated to finding more effective treatments and, ultimately, a cure for paralysis that results from spinal cord injury (SCI). Spinal cord injury results from trauma to or disease of the spinal cord. The primary result of SCI is paralysis. Founded in 1985, The Miami Project is a coalition of researchers, clinicians, and therapists whose expertise all relates directly to spinal cord injury and whose full-time focus is spinal cord research. Clinical and rehabilitation programs require the participation of a limited number of volunteers. In addition to basic research, the Miami Project offers the 1-800-STAND UP information line for questions regarding spinal cord injury research. The Miami Project also publishes informational brochures and, three times a year, a newsletter entitled 'The Project.' Information and resources are available from a site maintained on the World Wide Web at http://www.miamiproject.miami.edu. Relevant area(s) of interest: Spinal Cord Injury
·
Moving Forward Address: Moving Forward 2934 Glenmore Avenue, Kettering, OH 45409 Telephone: (937) 293-0409 Toll-free: (800) 526-3456 Email:
[email protected] Web Site: http://www.acor.org/diseases/hematology/mpd
74 Spinal Cord Injury
Background: Moving Forward is a voluntary not-for-profit self-help organization dedicated to disseminating informational resources concerning Myoclonus to affected individuals and their families. Myoclonus, a syndrome with more than 75 classifications, is a neurological movement disorder characterized by sudden, shock-like, involuntary contractions of muscles. The disorder may interfere with walking, speech, and/or manual activities. Myoclonus may be caused by a chemical imbalance, a brain or spinal cord injury, a stroke, epilepsy, or another underlying disorder. Established in 1995, Moving Forward is a networking group that promotes awareness of Myoclonus and its many different forms; engages in patient and professional education; and promotes and supports research. The organization offers brochures as well as a resource list of books, articles, and videos. Moving Forward also provides a listing of movement disorder clinics throughout the country as well as several organizations that can offer further information, assistance, networking services, and additional support. ·
National Spinal Cord Injury Association Address: National Spinal Cord Injury Association 8300 Colesville Road, Suite 551, Silver Spring, MD 20910 Telephone: (301) 588-6959 Toll-free: (800) 962-9629 Fax: (301) 588-9414 Email:
[email protected] Web Site: http://www.spinalcord.org Background: The National Spinal Cord Injury Association is a not-forprofit, voluntary organization dedicated to enabling people with spinal cord injury (SCI) to make choices and take actions to achieve their highest level of independence and personal fulfillment. Spinal cord injury results from trauma to or disease of the spinal cord. The primary result of SCI is paralysis. Established in 1948 as a response to the medical and social problems that result from injury to the spinal cord, NSCIA has 12,000 members with 33 chapters and support groups. Members are encouraged to help with peer-to-peer counseling, disability rights, and general advocacy. Educational materials include a quarterly magazine entitled 'SCI Life' and fact sheets pertaining to various aspects of Spinal Cord injuries. NSCIA maintains a web site at http://www.spinalcord.org ,and e-mail at NSCIA2atAOL.com. Relevant area(s) of interest: Spinal Cord Injury
Seeking Guidance 75
·
National Spinal Cord Injury Hotline Address: National Spinal Cord Injury Hotline 2200 Kernan Drive, Baltimore, MD 21207 Telephone: (410) 448-6623 Toll-free: (800) 526-3456 Fax: (410) 448-6627 Email:
[email protected] Web Site: http://www.sciotline.org Background: Established in 1984, the National Spinal Cord Injury Hotline, a not- for-profit organization, is a toll-free information and referral service that is available to individuals who have sustained a traumatic spinal cord injury. The staff is composed of medical professionals and health administrators. The Hotline facilitates the callers' search for support and resources by referring them to others who have personal experience or to professionals with expertise in spinal cord injuries. Referrals to a wide variety of resources include rehabilitation facilities and other spinal cord injury organizations. The Hotline works with people with spinal cord injuries and their families to find answers to questions ranging from therapeutic programs to house modifications, from medical equipment to sports and recreation. Relevant area(s) of interest: Spinal Cord Injury
·
Neuropathy Trust (UK) Address: Neuropathy Trust (UK) PO Box 26, Nantwich, Cheshire, CW5 5FP, United Kingdom Telephone: (202) 973-8426 Toll-free: (888) 772-1711 Web Site: http://www.neuropathy- trust.org Background: The Neuropathy Trust is a not-for-profit organization in the United Kingdom dedicated to providing support and information to people affected by peripheral neuropathy, which is a general term referring to inflammation, disease, or injury of peripheral nerves. The peripheral nerves extend from the brain and spinal cord (central nervous system) to all areas of the body. Although the symptoms associated with peripheral neuropathy may vary, they often include tingling, numbness, muscle weakness, or pain. The Neuropathy Trust was established and is managed by individuals affected by peripheral neuropathy and includes members from countries around the world. The Trust's immediate aims include offering emotional support to people with peripheral neuropathy and their families, providing networking opportunities, and increasing public awareness of the nature of peripheral neuropathy and the need for
76 Spinal Cord Injury
early intervention. The organization is also committed to promoting and supporting research into the causes and treatment of peripheral neuropathy, encouraging biotechnology and pharmaceutical companies to develop new therapies and devices for the treatment and management of neuropathy, and increasing awareness of the need for special accommodations and facilities for affected individuals. The Neuropathy Trust also offers educational materials including a booklet entitled 'Peripheral Neuropathy: Under the Spotlight' and a regular newsletter called 'Relay.' The Trust's web site discusses the organization's mission, goals, and services; has a guestbook area; and provides understandable information on peripheral neuropathy. ·
Paralysis Society of America Address: Paralysis Society of America 801 Eighteenth Street N.W., Washington, DC 20006-3517 Telephone: (202) 973-8426 Toll-free: (888) 772-1711 Fax: (202) 973-8421 Email:
[email protected] Web Site: http://www.psa.org Background: The Paralysis Society of America (PSA) is a national voluntary not- for-profit organization whose membership includes individuals affected by spinal cord disease or injury, their family members and caregivers, health professionals, and other interested individuals. The Society is dedicated to promoting quality health care for people with spinal cord dysfunction; advocating for research and education addressing spinal cord injury and disease; strengthening civil rights that maximize opportunities, independence, and the quality of life of all its members; and disseminating information concerning the full spectrum of issues associated with spinal cord injury and disease. The spinal cord is the long, cylindrical structure of nerve tissue that is located inside the central canal within the spinal column (spinal cavity) and extends from the lowest region of the brain. Depending upon the nature of spinal cord disease or the specific location and extent of a spinal cord injury, loss of sensation and muscle weakness or paralysis may result. The Paralysis Society of America offers its membership a national information and referral service, a peer support network, family support, a 24-hour helpline for those who recently received a spinal cord injury, and a quarterly newsletter entitled 'News Wheels' that has a variety of features including a regular legislative update. In addition, the Society provides membership discounts on a variety of publications and offers a PSA publications catalog in English and Spanish that outlines more than
Seeking Guidance 77
45 publications and videotapes concerning spinal cord injury or disease. Eligible PSA members may also receive additional benefits through the Society's association membership in the American Association of People with Disabilities. Relevant area(s) of interest: Spinal Cord Injury ·
Paralyzed Veterans of America Address: Paralyzed Veterans of America 801 18th Street NW, Washington, DC 20006-3517 Telephone: (202) 872-1400 Toll-free: (800) 424-8200 Email:
[email protected] Web Site: http://www.pva.org Background: The Paralyzed Veterans of America (PVA) is a voluntary not-for- profit organization dedicated to serving the needs of its members - all of whom have catastrophic paralysis caused by spinal cord injury or disease. Established in 1946, PVA has been in the forefront of improving health care, rehabilitation, and access to society for paralyzed veterans and all citizens with a disability. As part of its mission, PVA's Research and Education Program has funded a wide range of educational materials and videotapes for people with disabilities, their families, the general public, and professionals in the field of spinal cord dysfunction. The materials include a booklet entitled 'An Introduction to Spinal Cord Injury - Understanding the Changes,' a pamphlet entitled 'Resource Connection,' and brochures. PVA consists of 16,000 members and 54 chapters and also has 59 service offices nationwide that serve the needs of all veterans seeking Department of Veteran Affairs claims and benefits. PVA's national advocacy program focuses on obtaining full Civil Rights for those with a disability. In addition, the organization funds the National Spinal Cord Hotline (800-526-3456). PVA maintains a web site on the Internet at http://www.pva.org. Relevant area(s) of interest: Spinal Cord Injury
·
Shake-A-Leg, Inc Address: Shake-A-Leg, Inc. 76 Dorrance Street, Providence, RI 02903 Telephone: (401) 421-1111 Toll-free: (800) 782-6387 Fax: (401) 454-0351 EWeb Site: http://www.shakealeg.org Background: Shake-A-Leg, Inc. is a voluntary organization dedicated to providing mainstream and alternative therapeutic services to develop life
78 Spinal Cord Injury
skills for individuals from all cultural and socioeconomic backgrounds who have experienced trauma to the spinal cord and related nervous system disorders. Established in 1982, Shake-A-Leg has improved the lives of hundreds of physically challenged people through a variety of multi- faceted programs. Its unique approach to improvement of the mind, body, and spirit serves as a catalyst to reconstruct numerous lives shattered by spinal cord injury or other related nervous system disorders. Shake- A-Leg is a second-stage rehabilitation center where physically challenged people strive to move beyond what they thought was possible. It is unique in that, after a traumatic injury, it fills much of the gap between where rehabilitation centers leave off and a fulfilling life begins again. Consisting of 2,200 members, Shake-A-Leg produces educational materials including a brochure entitled 'Shake-A-Leg, An International Center for the Advancement of Physically Challenged People,' a newsletter, and audio-visual aids. The organization coordinates a support group; encourages advocacy, networking, and education; provides referrals; and numerous other programs. Such programs include a Body Awareness Training Program that offers information and services concerning wheelchair mobility; physical therapy; aquatic physical therapy; a process that attempts to reverse the rigidity of the connective tissue (rolfing); massage; nutritional counseling; and the Feldenkrais method (Functional Integration and Awareness through Movement). The organization also has a sports and recreational program and a sailing program. Shake-A-Leg can be reached at its e-mail address at shakeatmail.bbsnet.com or its website at http://www.shakealeg.org. Relevant area(s) of interest: Spinal Cord Injury ·
Shriners Hospitals for Children Address: Shriners Hospitals for Children P.O. Box 31356, Tampa, FL 33613-3356 Telephone: (813) 281-0300 Toll-free: (800) 237-5055 Fax: (813) 281-8496 Web Site: http://www.shrinershq.org Background: The Shriners Hospital for Children and the Shriners Burn Institutes are a network of pediatric hospitals that provide no-cost medical care to children with orthopedic problems or burn injuries. Shriners Hospital conducts research on orthopedic treatment and burn care and trains healthcare professionals in the treatment of orthopedic disabilities and burn injuries. Established in 1922, the hospitals are substantially funded through the Shriners Hospital for Children endowment fund. The hospitals treat children with a variety of diseases
Seeking Guidance 79
including (but not limited to) scoliosis, osteogenesis imperfecta, Legg Calve Perthes, and others. Burns and spinal injuries are also treated. Shriners Hospital consists of 23 chapters and offers educational materials such as 'Between Us' magazine, '20 Questions,' and 'The Story of Shriners Hospitals.' In addition, the organization assists in training physicians and other medical professionals in the treatment of orthopedic disabilities and burn injuries. The Shriners also operate a World Wide Web site at http://www.shrinershq.org. Relevant area(s) of interest: Spinal Cord Injury ·
Spinal Cord Injury Network International Address: Spinal Cord Injury Network International 3911 Princeton Drive, Santa Rosa, CA 95405-7013 Telephone: (707) 577-8796 Toll-free: (800) 548-2673 Fax: (707) 577-0605 Email:
[email protected] Web Site: http://www.sonic.net/spinal Background: Spinal Cord Injury Network International (SCINI) is a notfor- profit organization dedicated to responding to the needs of individuals who have experienced spinal cord injuries. Every year, approximately 10,000 individuals receive a spinal cord injury (SCI), resulting in varying degrees of paralysis (e.g., paraplegia or quadriplegia). The leading causes of spinal cord injury include motor vehicle accidents, acts of violence, falls, and sporting activities. Established in 1986, Spinal Cord Injury Network International provides affected individuals and family members with a clear understanding of the options available for leading a healthy, active life following paralysis. The Network also provides links to health care services, organizations, agencies, specialists, and hospitals that offer information, assistance, and services for individuals with spinal cord injuries and their families. In addition, Spinal Cord Injury Network International has a lending program of informational videos that address a variety of topics, including accessibility, autonomic dysreflexia, bladder and bowel management, brain injury, exercise, living with a disability, pressure sores, and sexuality. The Network also maintains a resource library of books, current medical journals, and files on topics related to spinal cord injuries and provides materials that offer information for travelers with disabilities. Spinal Cord Injury Network International also offers personal responses to questions on disability issues; provides reference assistance, online database searches, and reprints of medical journal articles for a small fee; and maintains a web site on the Internet.
80 Spinal Cord Injury
Relevant area(s) of interest: Spinal Cord Injury ·
Spinal Cord Society Address: Spinal Cord Society Wendell Road, Fergus Falls, MN 56537 Telephone: (218) 739-5252 Toll-free: (800) 526-3456 Fax: (218) 739-5262 Web Site: http://users.aol.com/scsweb Background: The Spinal Cord Society is a not-for-profit organization whose members include individuals with spinal cord injuries, their families and friends, and scientists and physicians who are dedicated to finding a cure for spinal cord paralysis through improved treatment and research. Established in 1978, the Society is a grassroots organization linked by over 200 chapters and more than 4,000 members throughout the United States and around the world. The Society raises funds for medical research, promotes citizen advocacy, and provides appropriate referrals to treatment and support. The Spinal Cord Society has been instrumental in establishing civilian research conferences and cure research/treatment centers for spinal cord injury. Other projects include pioneering computerized walking technology (functional electronic stimulation) for such injuries; artificial bone substitutes; autologous cell transplants (transplants to the spinal cord of cells cultured from the patient's own body); and regeneration research. The Spinal Cord Society also publishes a monthly newsletter. Relevant area(s) of interest: Spinal Cord Injury
·
Think First Foundation Address: Think First Foundation 22 South Washington Street, Park Ridge, IL 60068 Telephone: (847) 692-2740 Toll-free: (800) 844-6556 Fax: (847) 692- 2394 Email:
[email protected] Web Site: http://www.thinkfirst.org Background: The Think First Foundation (TFF) is a not-for-profit voluntary organization dedicated to preventing brain and spinal cord injuries through education of individuals, community leaders, and creators of public policy. Established in 1986, TFF was founded by the American Association of Neurological Surgeons and the Congress of Neurological Surgeons. Consisting of more than 200 chapters, TFF produces educational materials including a catalog entitled '1997 Catalog,
Seeking Guidance 81
Think First,' the 'Think First Fact Sheet,' and brochures. The Foundation conducts high school presentations, develops local programs engaging in public policy initiatives, supports public and community awareness projects, and has the 'Think First For Kids' program which is implemented in elementary schools by local teachers. TFF includes more than 200 active local programs throughout the United States, Chile, Canada, Mexico, and Brazil. Each program includes a sponsoring licensed physician and program coordinator who participate in the Think First high school program. More than five million students have attended Think First program presentations. TFF maintains a web site on the Internet at http://www.thinkfirst.org. Relevant area(s) of interest: Spinal Cord Injury
Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.
The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about spinal cord injury. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.
DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “spinal cord injury” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
82 Spinal Cord Injury
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “spinal cord injury”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “spinal cord injury” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with spinal cord injury. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “spinal cord injury” (or a synonym) in the search box.
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.
Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with spinal cord
Seeking Guidance 83
injury must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:10 ·
If you are in a managed care plan, check the plan’s list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at 11 http://www.abms.org/newsearch.asp. You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.
This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 10 11
84 Spinal Cord Injury
Finding a Neurologist The American Academy of Neurology allows you to search for member neurologists by name or location. To use this service, go to http://www.aan.com/, select “Find a Neurologist” from the toolbar. Enter your search criteria, and click “Search.” To find out more information on a particular neurologist, click on the physician’s name. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Selecting Your Doctor12 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·
Give me a chance to ask questions about spinal cord injury?
·
Really listen to my questions?
·
Answer in terms I understood?
·
Show respect for me?
·
Ask me questions?
·
Make me feel comfortable?
·
Address the health problem(s) I came with?
·
Ask me my preferences about different kinds of treatments for spinal cord injury?
·
Spend enough time with me?
12 This
section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
Seeking Guidance 85
Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.
Working with Your Doctor13 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·
You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.
·
It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.
·
Bring a “health history” list with you (and keep it up to date).
·
Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.
·
Tell your doctor about any natural or alternative medicines you are taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don’t, your doctor will assume that you understood everything that was said.
·
Write down your questions before your visit. List the most important ones first to make sure that they are addressed.
·
Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.
·
Ask your doctor to draw pictures if you think that this would help you understand.
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
13
86 Spinal Cord Injury
·
Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.
·
Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.
·
After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.
By following these steps, you will enhance the relationship you will have with your physician.
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:14 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
14
Seeking Guidance 87
Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Accommodation: distances. [EU]
Adjustment, especially that of the eye for various
Diving: An activity in which the organism plunges into water. It includes scuba and bell diving. Diving as natural behavior of animals goes here, as well as diving in decompression experiments with humans or animals. [NIH] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Manic: Affected with mania. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU] Osteogenesis: The histogenesis of bone including ossification. It occurs continuously but particularly in the embryo and child and during fracture repair. [NIH] Paraplegia: Paralysis of the legs and lower part of the body. [EU] Quadriplegia: Severe or complete loss of motor function in all four limbs which may result from brain diseases; spinal cord diseases; peripheral nervous system diseases; neuromuscular diseases; or rarely muscular diseases. The locked-in syndrome is characterized by quadriplegia in combination with cranial muscle paralysis. Consciousness is spared and the only retained voluntary motor activity may be limited eye movements. This condition is usually caused by a lesion in the upper BRAIN STEM which injures the descending cortico-spinal and cortico-bulbar tracts. [NIH] Rigidity: Stiffness or inflexibility, chiefly that which is abnormal or morbid; rigor. [EU]
88 Spinal Cord Injury
Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Ventilation: 1. in respiratory physiology, the process of exchange of air between the lungs and the ambient air. Pulmonary ventilation (usually measured in litres per minute) refers to the total exchange, whereas alveolar ventilation refers to the effective ventilation of the alveoli, in which gas exchange with the blood takes place. 2. in psychiatry, verbalization of one's emotional problems. [EU]
Clinical Trials 89
CHAPTER 3. CLINICAL TRIALS AND SPINAL CORD INJURY Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning spinal cord injury.
What Is a Clinical Trial?15 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for spinal cord injury is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
15
90 Spinal Cord Injury
What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
·
Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on spinal cord injury.
·
Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for spinal cord injury compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?
Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on spinal cord injury carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on spinal cord injury. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham
Clinical Trials 91
treatment.” This treatment, like a placebo, has no effect on spinal cord injury and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how spinal cord injury develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for spinal cord injury. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo
92 Spinal Cord Injury
surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Spinal Cord Injury The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to spinal cord injury.16 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·
Cardiac Disease and the Electrocardiogram in SCI Patients Condition(s): Spinal Cord Injury Study Status: This study is currently recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: The purpose of this three-year study is to determine the prevalence and incidence of the different types of cardiac disease and ECG abnormalities in SCI patients. Study goals are: (i) delineation of the specific types of heart disease that occur in the SCI population as manifested both pre-clinically and clinically and (ii) demonstration of their association with ECG findings. This will enable validation of scores and algorithms using the inexpensive and widely available ECG for the prevention of heart disease as well as it's early treatment and rehabilitation in SCI patients. The findings will be helpful in demonstrating what cardiological tests are appropriate for the mandated annual evaluation of SCI patients. Phase(s): Phase II
16
These are listed at www.ClinicalTrials.gov.
Clinical Trials 93
Study Type: Observational Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00013325;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Clinical Evaluation of a Wheelchair Mounted Robotic Arm Condition(s): Spinal Cord Injury Study Status: This study is currently recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: The primary purpose of this project, is to evaluate the effect of a wheelchair mounted robotic arm (WMRA) to improve the functional independence of veterans with SCI. The study will determine if the ability to perform marker tasks within the following four categories is improved after the 4 week training period using the robotic arm: 1. activities of daily living, 2. vocational tasks, 3. advanced tasks, and subject-specific tasks. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00011609;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Evaluation of Robotic Upper Extremity Neuro-Rehabilitation Condition(s): Spinal Cord Injury Study Status: This study is currently recruiting patients. Sponsor(s): Department of Veterans Affairs Rehabilitation Research and Development Service Purpose - Excerpt: We have established the feasibility and effectiveness of robot-aided rehabilitation in stroke patients using a robot for neurological rehabilitation designed and built by MIT. Results of a pilot study of 20 patients were promising and showed that robot therapy is safe, tolerated by patients and produces a significant, measurable benefit. We propose to test that the robotic upper extremity trainer is an acceptable cost effective adjunct to standard occupational therapy for patients with dysfunction of the shoulder and elbow due to hemiparetic stroke in a VA rehabilitation program.
94 Spinal Cord Injury
Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00037934;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Investigation of Subatmospheric Pressure Dressing on Pressure Ulcer Healing Condition(s): Diabetic Foot Ulcers Study Status: This study is currently recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: Many spinal cord injury (SCI) and otherwise debilitated patients develop pressure ulcers over the course of their injury or disease. Despite enhanced wound care management, many pressure ulcers do not heal completely and require surgical myocutaneous rotational flap coverage. Even then they often recur. The objectives of this study are: (1) to conduct a controlled comparative study of the effectiveness of subatmospheric pressure dressing (SPD) in healing pressure ulcers versus conventional saline wet-to-moist dressing techniques; (2) to establish indications and contra-indications for use of SPD In treating pressure ulcers; and (3) to develop a noninvasive, clinically usable optical digitizer and associated software for measurement of wound geometry for standardized quantitative assessment and longitudinal monitoring of wound healing. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00011531;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Safety and Efficacy of Oral Fampridine-SR for the Treatment of Spasticity Resulting from Spinal Cord Injury Condition(s): Muscle Spasticity Study Status: This study is currently recruiting patients. Sponsor(s): Acorda
Clinical Trials 95
Purpose - Excerpt: Normallly, nerve fibers carry electrical impulses through the spinal cord, providing communication between the brain and the arms and legs. In people with spinal cord injury, some fibers may be destroyed at the site of injury, while others remain connected but do not work correctly to carry electrical impulses. As a result, subjects with an incomplete spinal cord injury may have spasticity which is muscle spasms or muscle stiffness that makes movement difficult. FampridineSR is an experimental drug that increases the ability of the nerve to conduct electrical impulses. This study will examine the effects of Fampridine-SR on moderate to severe lower-limb spasticity, as well as the effects on bodily functions such as bladder control, bowel function and sexual function. The study will also examine the possible risks of taking Fampridine-SR. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00041717;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Study of an Implantable Functional Neuromuscular Stimulation System for Patients with Spinal Cord Injuries Condition(s): Spinal Cord Injury Study Status: This study is currently recruiting patients. Sponsor(s): FDA Office of Orphan Products Development; Case Western Reserve University Purpose - Excerpt: Objectives: I. Establish the procedures for implementing and assessing the clinical utility of functional neuromuscular stimulation using an implanted eight-channel standing and transfer system in patients with incomplete tetraplegia or paraplegia. II. Develop and apply quantitative functional evaluations of system performance in these patients. III. Perform long term follow up and monitor system use outside of the laboratory. Study Type: Interventional Contact(s): Ohio; Case Western Reserve University, Cleveland, Ohio, 44106, United States; Recruiting; Ronald J. Triolo 216-778-7877; MetroHealth System, Cleveland, Ohio, 44109, United States; Recruiting; John A. Davis 216-778-3456. Study chairs or principal investigators: Ronald J. Triolo, Study Chair; Case Western Reserve University
96 Spinal Cord Injury
Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004445;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Study of Bilateral Phrenic Nerve Pacing Via Intramuscular Electrodes Surgically Implanted Into the Diaphragm To Achieve Artificial Ventilation in Patients With Ventilator-Dependent Tetraplegia Condition(s): Spinal Cord Injury; Quadriplegia Study Status: This study is currently recruiting patients. Sponsor(s): FDA Office of Orphan Products Development; Case Western Reserve University Purpose - Excerpt: Objectives: I. Determine the efficacy and safety of bilateral phrenic nerve pacing via electrodes surgically implanted into the diaphragm to achieve full-time artificial ventilation in patients with ventilator-dependent tetraplegia. Study Type: Interventional Contact(s): Ohio; Case Western Reserve University, Cleveland, Ohio, 44106, United States; Recruiting; Anthony F. DiMarco 216-778-2362; MetroHealth System, Cleveland, Ohio, 44109, United States; Recruiting; Anthony F. DiMarco 216-778-2362. Study chairs or principal investigators: Anthony F. DiMarco, Study Chair; Case Western Reserve University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00010374;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Supported Treadmill Ambulation Training after Spinal Cord Injury Condition(s): Spinal Cord Injury Study Status: This study is currently recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: This is a randomized, controlled trial to compare supported treadmill ambulation training (STAT) to conventional gait training for improving gait speed, gait endurance, gait efficiency and muscle function in SCI subjects injured more than six months prior to start of training. Each subject will receive twelve weeks of either CGT or STAT, given as 20 minutes of training within a one-hour period per day, five days per week. These subjects will be studied baseline, 4,8 and 12 weeks of training, and three months after the end of training with a
Clinical Trials 97
battery of tests designed to evaluate the subjects' gait and muscle function. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00013338;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Treadmill Training for Spinal Cord Injury Condition(s): Spinal Cord Injury Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Child Health and Human Development (NICHD) Purpose - Excerpt: This is a trial to test whether treadmill training can be used to improve the "walking" of patients with partial spinal cord injury. While on the treadmill, patients will be partially supported through the use of a specially designed harness attached to an overhead lift (also called Body Weight Supported Treadmill Training, BWSTT). Patients who enroll in this study will be randomly assigned to either the experimental group, which receives 12 weeks of this specialized treadmill training with regular physical therapy, or to the control group, which receives 12 weeks regular physical therapy. The ability of the patients to "walk" will be measured before and after treatment as well as 6 and 12 months later, using standard tests that examine mobility independence and speed of ambulation. The trial takes place across five sites in the US and Canada. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006429;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Treatment of Chronic Pain after Spinal Cord Injury (SCI) or Amputation Condition(s): Spinal Cord Injuries; Amputation, Traumatic; Pain Study Status: This study is currently recruiting patients.
98 Spinal Cord Injury
Sponsor(s): National Institute of Child Health and Human Development (NICHD) Purpose - Excerpt: Pain is a major problem for people after spinal cord injuries and amputations. This is a study to test how pain is affected by adding methadone to a six-week program of weekly physical therapy, relaxation training and counseling. Individuals who qualify for this study will receive a comprehensive medical and physical therapy evaluation. Study Type: Interventional Contact(s): Jill Smith 1-412-578-3115
[email protected]; Pennsylvania; University of Pittsburg Medical Center, Pittsburgh, Pennsylvania, 15213, United States; Recruiting; Thomas E. Rudy, Ph.D. 412-578-3115
[email protected]. Study chairs or principal investigators: Thomas E. Rudy, Ph.D., Principal Investigator; University of Pittsburgh Medical Center Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006448;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Chronic Pain in Spinal Cord Injury Condition(s): Spinal Cord Injuries; Pain Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Child Health and Human Development (NICHD) Purpose - Excerpt: This trial tests the effectiveness of the drug amitriptyline vs placebo to relieve chronic pain in adults that have had a spinal cord injury. Phase(s): Phase IV Study Type: Interventional Contact(s): Cathy Warms, MN, ARNP, Research Study Nurse 1-206-6168568
[email protected]; Washington; University of Washington, Department of Rehabilitation Medicine, Seattle, Washington, 98195, United States. Study chairs or principal investigators: Diana Cardenas, M.D., Principal Investigator; University of Washington, Department of Rehabilitation Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006428;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
Clinical Trials 99
·
Effects of Acute SCI on Colonic Motility & Tone Condition(s): Spinal Cord Injury Study Status: This study is no longer recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: This study will compare individuals with acute SCI to control patients in order to: 1. Determine if there are changes in colonic tone and sensation after SCI by comparing the fasting responses to the postparandial responses; 2. Determine if there are changes in colonic phasic motility after SCI by comparing the fasting responses to the postprandial responses; 3. Determine if colonic motor and sensory function after SCI change over time by repeating these studies six month later in SCI and control patients. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00013312;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Electrical Control of Bladder in Spinal Cord Injury Patients Condition(s): Spinal Cord Injury Study Status: This study is no longer recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: The investigators will continue their work with implanted stimulators to improve bladder and bowel function. Electrical stimulation produces simultaneous contraction of sphincters with the target organs, making emptying difficult. By optimizing electrode placement, employing a new electrode design and waveform choice, it is hoped to improve the 50% of subjects able to defecate with existing approaches. This is part of a multi-center study with multiple support sources, including Rehab R&D, PVA and a commercial stimulator company. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00011570;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
100 Spinal Cord Injury
·
Functional Magnetic Micturition in Patients w/SCI Condition(s): Spinal Cord Injury Study Status: This study is no longer recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: This project will determine the ultimate usefulness of functional magnetic stimulation (FMS) as an assistive device for voiding in patients with SCI. Phase(s): Phase II Study Type: Interventional Contact(s): Lin Vernon, M.D. (562) 494-5701
[email protected]; California; VAMC, Long Beach, Long Beach, California, United States; Vernon Lin, M.D. 562-494-5701. Study chairs or principal investigators: John Fryer, Ph.D. Asst. Director; Program Analysis and Review Section (PARS), Rehabilitation Research & Development Service; Nancy Rocheleau, Program Analyst; Program Analysis and Review Section (PARS), Rehabilitation Research & Development Service Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00011557;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Methylprednisolone Given by 24-Hour or 48-Hour Infusion versus Tirilazad for Acute Spinal Cord Injury Condition(s): Spinal Cord Injury Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS); Yale University Purpose - Excerpt: Objectives: I. Compare the efficacy and safety of 24versus 48-hour infusion of methylprednisolone (MePRDL) versus tirilazad for patients with acute spinal cord injury. II. Compare neurologic recovery following 24- and 48-hour MePRDL infusions. Phase(s): Phase III Study Type: Interventional Contact(s): Michael Bracken 860-785-2846. Study chairs or principal investigators: Michael Bracken, Study Chair; Yale University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004759;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
Clinical Trials 101
·
Physical Performance Measures for Manual Wheelchair Users Condition(s): Spinal Cord Injury Study Status: This study is no longer recruiting patients. Sponsor(s): Department of Veterans Affairs Purpose - Excerpt: The project is intended to modify the Functional Independence Measure (FIM) for manual wheelchair users. It will determine if the new measure is a better measure of community independence for manual wheelchair users than the FIM. During the Phase 1 of the study it will then use this new measure to determine whether a home exercise program increases functional independence in wheelchair users. In Phases II and III of the study 120 manual wheelchair users will participate to test and validate the new measure and to test the effectiveness of therapeutic exercise. Subjects will range in age from 20 to 79 yrs. and have a variety of disabilities. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00011544;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
·
Magnetic Resonance Imaging Studies of Motor and Thought Processes Condition(s): Cerebrovascular Disorder; Healthy; Movement Disorder; Nervous System Disease; Spinal Cord Injury Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: Magnetic resonance imaging (MRI) is a diagnostic tool that creates high quality images of the human body without the use of Xray (radiation). MRI is especially useful when studying the brain, because it can provide information about certain brain functions. In addition, MRI is much better than standard X-rays at showing areas of the brain close to the skull and detecting changes in the brain associated with neurological diseases. In this study researchers will use MRI to gather information about the processes that control human movement and sensory processing. The purpose of the study is to investigate how the brain is activated when remembering, thinking, or recognizing objects. Researchers would like to determine what happens to brain functions when patients have trouble remembering, thinking, or recognizing
102 Spinal Cord Injury
objects following the start of disorders in the brain and nervous system. In addition, this study will investigate the processes of motor control in healthy volunteers and patients with disease. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001361;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07 ·
Mechanisms of Human Plasticity in the Human System Condition(s): Blindness; Cerebrovascular Accident; Spinal Cord Injury Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: The purpose of this study is to investigate the physiology associated with plasticity of the motor system. Plasticity refers to the process by which neighboring brain cells assume the responsibilities of damaged or diseased brain cells. The mechanisms behind this process are unknown. However, researchers have several theories about how plastic changes take place. Possible explanations include the growth of new connections between brain cells and the use of previously unused connections. Researchers plan to use transcranial magnetic stimulation and drug intervention in order to determine the mechanisms responsible for specific types of plasticity. Previous studies have shown that certain drugs can affect the mechanisms involved in these changes. By using one drug at a time, researchers plan to evaluate the role of each of several different mechanisms in brain reorganization. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001661;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
Clinical Trials 103
·
Phase II Randomized Pilot Study of Body Weight Support and Treadmill Training for Chronic Thoracic Spinal Cord Injury Condition(s): Spinal Cord Injury Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS); University of California, Los Angeles Purpose - Excerpt: Objectives: I. Assess the ability of patients with and without sensorimotor loss below the thoracic spinal cord injury to execute coordinated whole-limb synergies sufficient for walking with full or partial weight support. II. Promote weight bearing, balance, and reciprocal leg movement in these patients. III. Elicit synchronized motor output within and between limbs in these patients. Phase(s): Phase II Study Type: Interventional Contact(s):. Study chairs or principal investigators: Bruce Dobkin, Study Chair; University of California, Los Angeles Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004812;jsessionid=5C75B1 23C30F18D7D53C0A0C0CEF5F07
Benefits and Risks17 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·
A new treatment could be more effective than the current treatment for spinal cord injury. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.
·
If the treatment is effective, then it may improve health or prevent diseases or disorders.
This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 17
104 Spinal Cord Injury
·
Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
·
People who take part in trials contribute to scientific discoveries that may help other people with spinal cord injury. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent
Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient. What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent.
Clinical Trials 105
What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·
Information on all known risks and benefits of the treatments in the study.
·
Know how the researchers plan to carry out the study, for how long, and where.
·
Know what is expected of you.
·
Know any costs involved for you or your insurance provider.
·
Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.
·
Talk openly with doctors and ask any questions.
After you join a clinical trial, you have the right to: ·
Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.
·
Receive any new information about the new treatment.
·
Continue to ask questions and get answers.
·
Maintain your privacy. Your name will not appear in any reports based on the study.
·
Know whether you participated in the treatment group or the control group (once the study has been completed).
What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care.
106 Spinal Cord Injury
What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·
What is the purpose of the clinical trial?
·
What are the standard treatments for spinal cord injury? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?
·
What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?
·
How long will the treatment last? How often will I have to come back for follow-up exams?
·
What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?
·
Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?
·
How will my health be monitored?
·
Where will I need to go for the clinical trial? How will I get there?
·
How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?
·
Will I be able to see my own doctor? Who will be in charge of my care?
·
Will taking part in the study affect my daily life? Do I have time to participate?
·
How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?
Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with
Clinical Trials 107
most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “spinal cord injury” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
·
For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
·
For trials on neurological disorders and stroke, visit and search the Web site sponsored by the National Institute of Neurological Disorders and Stroke of the NIH: http://www.ninds.nih.gov/funding/funding_opportunities.htm#Clinica l_Trials
General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna
·
A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
108 Spinal Cord Injury
·
The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
·
The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna
·
Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
·
Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
·
Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Algorithms: A procedure consisting of a sequence of algebraic formulas and/or logical steps to calculate or determine a given task. [NIH] Amitriptyline: Tricyclic antidepressant with anticholinergic and sedative properties. It appears to prevent the re-uptake of norepinephrine and serotonin at nerve terminals, thus potentiating the action of these neurotransmitters. Amitriptyline also appears to antaganize cholinergic and alpha-1 adrenergic responses to bioactive amines. [NIH] Bilateral: Having two sides, or pertaining to both sides. [EU] Cardiac: Pertaining to the heart. [EU] Cardiological: Relating to the study of the heart. [EU] Cerebrovascular: Pertaining to the blood vessels of the cerebrum, or brain. [EU]
Diaphragm: The musculofibrous partition that separates the thoracic cavity from the abdominal cavity. Contraction of the diaphragm increases the volume of the thoracic cavity aiding inspiration. [NIH] Extremity:
A limb; an arm or leg (membrum); sometimes applied
Clinical Trials 109
specifically to a hand or foot. [EU] Gait: Manner or style of walking. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Intramuscular: Within the substance of a muscle. [EU] Micturition: The passage of urine; urination. [EU] Motility: The ability to move spontaneously. [EU] Postprandial: Occurring after dinner, or after a meal; postcibal. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Saline: Salty; of the nature of a salt; containing a salt or salts. [EU] Skull: The skeleton of the head including the bones of the face and the bones enclosing the brain. [NIH] Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU]
111
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on spinal cord injury. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on spinal cord injury. In Part II, as in Part I, our objective is not to interpret the latest advances on spinal cord injury or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with spinal cord injury is suggested.
Studies 113
CHAPTER 4. STUDIES ON SPINAL CORD INJURY Overview Every year, academic studies are published on spinal cord injury or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on spinal cord injury. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on spinal cord injury and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and spinal cord injury, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the
114 Spinal Cord Injury
format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “spinal cord injury” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Anorectal Functions in Patients with Spinal Cord Injury Source: Neurogastroenterology and Motility. 10(6): 509-515. December 1998. Contact: Available from Blackwell Science, Ltd. Journal Subscriptions, P.O. Box 88, Oxford OX2 OEL, UK. +44 1865 206180 Fax +44 1865 206219. E-mail:
[email protected]. Summary: This article reports on a study of anorectal functions, related to the level of spinal cord lesion and its completeness in patients with spinal cord injury. The authors also determined the value of neurophysiological tests for completeness of transections compared with manometry and visceral sensory testing. In 32 patients with spinal trauma (25 males, 7 females; mean age 31.5 years), completeness of transection was assessed clinically. In 16 of these patients, a neurological workup included recording somatosensory evoked potentials (SEP) and motor evoked potentials (MEP) from the pudendal nerve during the first week after trauma. Also, anal sphincter electromyography (EMG) and pudendal nerve terminal motor latency (PNTML) were assessed. All patients also underwent conventional anorectal manometry and visceral sensory testing. Of these 32 patients, 15 were judged as complete on the basis of their clinical signs. Of the 16 tested neurologically, seven were labelled complete since no MEP or SEP were detectable. PNTML was present in 12 of 16 patients, independent of the completeness of the lesion, and was rated normal in 9 and delayed in 3 patients. EMG was normal in 5 and pathological in 11 cases. In 5 of 15 cases of those judged as complete, visceral sensory testing revealed a minimal threshold for rectal perception of distention of 44 mL, which sometimes was also perceived as the urge to defecate. The authors conclude that anorectal function testing, and specifically visceral sensory testing, may be superior to neurological assessment of the completeness of spinal cord lesions. They propose that visceral afferent pathways other than the spinothalamic tract and less accessible to conventional neurophysiological diagnostic workup might be involved in rectal perception. 1 figure. 4 tables. 28 references. (AA-M).
Studies 115
·
Management of Chronic Complex Urinary Problems in Children: Urinary Incontinence Associated with Spina Bifida and Spinal Cord Injury Source: Family Urology. 5(1): 9-11. 2000. Contact: Available from American Foundation for Urologic Disease. 1126 North Charles Street, Baltimore, MD 21201. (800) 242-2383 or (410) 4681800. Fax (410) 468-1808. Website: www.afud.org. Summary: This article on the management of chronic complex urinary problems in children focuses on urinary incontinence (UI) associated with spina bifida and spinal cord injury. The author addresses several of the complex problems that have a lifelong impact on the child and family. These problems include UI associated with the birth defect spina bifida and the acquired problem of UI associated with spinal cord injury. The author reviews the medical conditions involved, diagnostic considerations, basic management strategies, and the emotional impact of chronic illness. The author notes that regular physician visits with comprehensive evaluation of the function and structure of the bladder and kidneys are only one step in managing urinary incontinence. The emotional and developmental considerations of each individual child and family situation may impact a medical or surgical decision. The author also briefly considers the importance of a multidisciplinary care team for these children with complex medical concerns. 1 figure.
·
Epidemiology and Risk Factors for Urinary Tract Infection in Patients with Spinal Cord Injury Source: Journal of Urology. 164(4): 1285-1289. October 2000. Contact: Available from Lippincott Williams and Wilkins. 12107 Insurance Way, Hagerstown, MD 21740. (800) 638-3030 or (301) 714-2334. Fax (301) 824-7290. Summary: This article reports on a study that identified the incidence and risk factors associated with urinary tract infection in spinal cord injured patients. The authors prospectively followed 128 patients at their spinal cord injury reference hospital for 38 months and obtained certain data, including demographic characteristics, associated factors, methods of urinary drainage, bladder type, urological complications, and predisposing factors of each infection episode. Of 128 patients, 100 (78 percent) were male (age 32 years, plus or minus 14.5 years). All patients had a nonfatal condition and 47 percent presented with associated factors. The incidence of urinary tract infection (UTI) was expressed as number episodes per 100 patients daily or person days. The overall incidence of UTI was 0.68; other incident rates were 2.72 for male
116 Spinal Cord Injury
indwelling catheterization, 0.41 for clean intermittent catheterization, 0.36 for condom catheterization, 0.34 for female suprapubic catheterization, and 0.06 for normal voiding. The risk factors associated with UTI were invasive procedures without antibiotic prophylaxis, cervical injury, and chronic catheterization. Risk factors associated with repeat infection were a functional independent measure score of less than 74 and vesicoureteral reflux (return of urine from the bladder back to the kidneys). The authors conclude that spinal cord injured patients with complete dependence and vesicoureteral reflux are at highest risk for UTI. 8 tables. 21 references. ·
When Spinal Cord Injury Disrupts Urologic Function Source: Contemporary Urology. 7(11): 54-56, 58-62. November 1995. Contact: Available from Medical Economics Publishing, Inc. 5 Paragon Drive, Montvale, NJ 07645. (800) 432-4570. Summary: Spinal cord-injured patients require lifelong urologic followup. The authors review the physiologic basis of various urologic complications in this population. They note that, in addition to bladder dysfunction, they are at increased risk for autonomic dysreflexia, urinary tract infections (UTIs), urinary stones, sexual dysfunction, and infertility. The authors describe evaluation and management options for each condition. Two sidebars cover the classification of spinal cord injury; and normal bladder innervation and micturition. 2 tables. 35 references.
·
Comparison of Oral Health in Spinal Cord Injury and Other Disability Groups Source: SCD. Special Care in Dentistry. 13(6): 229-235. NovemberDecember 1993. Summary: This article reports on a controlled pilot study that investigated oral health in persons with quadriplegia due to spinal cord injury, and compared dental disease rates in spinal cord injury and other disability groups. Seventeen adults with spinal cord injury and 17 controls were assessed for dental/medical/social history; manual function; head, neck, and oral lesions; salivary flow; decayed, missing, and filled tooth surfaces (DMFS); and gingivitis, periodontal pockets, plaque, and calculus. Findings were compared with those from prior studies according to the same protocol, for groups of similar age with mental retardation, cerebral palsy, traumatic brain injury, and chronic mental illness. No significant differences between spinal cord injury and control subjects were noted, except that fewer subjects with spinal cord injury brushed daily or flossed; subjects who receive oral hygiene care tended to have more plaque and gingivitis than those brushing
Studies 117
independently. Subjects with spinal cord injury and mental illness had less gingivitis than those with mental retardation and cerebral palsy; for calculus, subjects with spinal cord injury ranked lower than subjects with mental illness. Subjects with mental retardation and traumatic-braininjury had fewer teeth than other groups. The findings suggest differences in oral health status and oral care for various populations with diabilities. 4 figures. 5 tables. 15 references. (AA-M).
Federally-Funded Research on Spinal Cord Injury The U.S. Government supports a variety of research studies relating to spinal cord injury and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.18 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to spinal cord injury and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore spinal cord injury and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for spinal cord injury: ·
Project Title: Magnetic Resonance of Spinal Cord Injury Principal Investigator & Institution: Narayana, Ponnada A.; Professor of Radiology; Radiology; University of Texas Hlth Sci Ctr Houston Box 20036 Houston, Tx 77225 Timing: Fiscal Year 2000; Project Start 1-JUL-1992; Project End 1-MAR2002
18 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
118 Spinal Cord Injury
Summary: Every year in the United States 10,000 to 20,000 young adults suffer permanent disability as a result of spinal cord injury. However, a proper evaluation and characterization of spinal cord injury is hindered by lack of a non-invasive radiologic modality. In these studies we propose to critically assess the role of magnetic resonance (MR), which includes both magnetic resonance imaging (MRI) and magnetic resonance spectroscopy (MRS) , in the non-invasive diagnosis and prognosis of spinal cord injury. The proposed studies will be performed on three types of injuries with different severity in a rodent model with histopathological profiles similar to those seen in humans. The MRIinferred extent and location of hemorrhage, edema and residual cord tissue (based on fast spin echo volume imaging and three-dimensional image analysis) will be validated with quantitative histology performed on the same animals. The MRS-determined changes in the concentration of N-acetyl aspartate (NAA) and lactate as a result of injury to the spinal cord will be compared with those determined using standard biochemical techniques. Both these studies will be performed at seven time points following the cord injury. In addition, MR results will be compared and correlated with functional (behavioral and electrophysiological) studies performed longitudinally. These studies could provide non-invasively additional and important information for predicting neurologic outcome following spinal cord injury and help customizing treatment on an individual basis in humans. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Male Urogenital Function and Chronic Spinal Cord Injury Principal Investigator & Institution: Hubscher, Charles H.; Assistant Scientist; Physiological Sciences; University of Florida Gainesville, Fl 32611 Timing: Fiscal Year 2000; Project Start 8-SEP-2000; Project End 1-AUG2003 Summary: The neural mechanisms involved in the control/coordination of urogenital functions is poorly understood, making restoration of function following traumatic spinal cord injury a difficult task. In humans, spinal cord injury occurs predominantly in young males, compromises sexual function, and leaves most patients infertile because of an inability to ejaculate. Moreover, bladder voiding dysfunction is common due to bladder-sphincter dyssynergia. Incoordination of perineal motoneuron circuits, resulting from spinal cord injury-induced changes in non-locomotor segmental reflex circuits involved in male reproductive function and micturition, likely contributes to these
Studies 119
complications. Since normal ejaculation and micturition require both an intact segmental reflex arc and brainstem integration, we have, in recent years, developed and characterized an in vivo brainstem-spinal cord electrophysiological animal model to study the neurological causes of sexual dysfunction following severe midthoracic spinal cord injury. Our previous studies with this model have shown that chronic bilateral lesions of the dorsal 3/5 of T8 spinal cord is correlated with (i) impaired bladder/sexual reflexes, (ii) changes in lumbosacral neural circuits mediating perineal muscle function and (iii) loss of ascending and descending connections between the distal urogenital tract and the medullary reticular formation (ii/iii - as determined in terminal electrophysiological experiments). The overall aim of the proposed research is to use this spino-bulbo-spinal model to address important questions regarding the neural control/coordination of smooth and striated muscles subserving sexual and bladder functions in male rats following chronic spinal cord injury. A unique benefit of our model lies in our ability to focus on the integration of information from multiple pelvic viscera. The knowledge gained from these basic scientific experiments will more specifically ascertain the spinal cord regions and the specific neural circuitry which should be targeted for therapeutic interventions designed to improve the control/coordination of sexual, bladder and bowel functions following chronic spinal cord injury. Parallel electrophysiological, behavioral and neuroanatomical studies are proposed. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Oxidation of Macromolecules in Spinal Cord Injury Principal Investigator & Institution: Liu, Danxia; Associate Professor; Neurology; University of Texas Medical Br Galveston 301 University Blvd Galveston, Tx 77555 Timing: Fiscal Year 2000; Project Start 5-MAR-1999; Project End 8-FEB2002 Summary: The long term objective of this project is to reveal mechanisms whereby free radicals damage neurons following spinal cord injury - a major health care issue. The initial trauma is worsened by secondary destructive processes, including the release of toxic substances into the extracellular space by the injured cells. Better characterization of the mechanisms whereby secondary damage agents cause neuronal degeneration should pave the way to improving pharmacological methods of disrupting the secondary damage cascade. The PI is funded by NIH (R29) to study the correlation between free radical production and membrane lipid oxidation. The present project is a complementary
120 Spinal Cord Injury
study, to test the hypothesis that oxidation of major cell components is the final pathway whereby free radicals cause neuronal degeneration and death in spinal cord injury. The specific aims are: 1. To verify that oxidative damage to proteins and DNA is associated with spinal cord injury. The time courses of production of 8- hydroxy-2-deoxyguanosine (8-OHdG)- a marker of DNA oxidation, protein carbonyl content (PCC)an indicator of protein oxidation, and nitrotyrosine (NTyr)- an indicator of protein nitration, will be determined, protein degradation examined by Western blots. Apoptosis will be examined by in situ immunohistochemical staining, enzyme-linked immuno-sorbent assay (ELISA) for quantitation of DNA fragmentation, and laddering of DNA fragments by electrophoresis. Neuronal death will be quantitated by counting neurons by specific immunohistochemical staining of neurofilament protein in spinal cord tissue following impact spinal cord injury. 2. To apply free radical suppressors (superoxide dismutase and glutathione peroxidase), a nitric oxide synthase inhibitor (nitro-Larginine), and an iron chelator (desferrioxamine) into the intrathecal space of the rat spinal cord by a microdialysis or a microcannula loop. The time course of hydrogen peroxide and hydroxyl radical in the extracellular space will be measured by microdialysis sampling; 8-OHdG, PCC and NTyr are measured, protein degradation examined, apoptosis characterized, and neuron death quantitated as in Aim 1 in spinal cord tissue following impact injury. This will further correlate free radical production to the oxidative neuronal damage. 3. To test whether free radicals at the levels induced by trauma cause oxidation of protein and DNA and trigger apoptotic neuron death in the rat spinal cord. The free radicals will be generated in the spinal cord at the levels measured upon trauma in the PI's previous studies by applying precursors and enzymes through the microcannula or microdialysis loop implanted in the intrathecal space of the spinal cord. 8-OHdG, PCC and NTyr will be measured, protein degradation examined, apoptosis characterized, and neuron death quantitated in spinal cord tissue as in Aim 1. This will directly test whether free radicals damage neurons by inducing oxidation of major cell components and will provide strategies for therapy. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Recovery of Function after Spinal Cord Injury Principal Investigator & Institution: Bregman, Barbara S.; Professor; Cell Biology; Georgetown University 37Th and O Sts Nw Washington, Dc 20057 Timing: Fiscal Year 2002; Project Start 1-APR-1989; Project End 0-JUN2007
Studies 121
Summary: (provided by applicant): It is now clear that under certain experimental conditions mature central neurons can regenerate after spinal cord injury. Interventions that alter the environment at the injury site and others that increase the intrinsic neuronal capacity for re-growth both contribute to the regeneration. This axonal regrowth also contributes to recovery of both skilled forelimb function and locomotion. We hypothesize that remodeling of central projections after injury in the CNS is not restricted to those neurons damaged directly. Little is known about the extent of anatomical reorganization that occurs in the injured CNS after spinal cord injury. Still less is understood about how this reorganization is influenced by alterations in the level of activity after injury. We hypothesize that supraspinal neurons rostral to the injury and changes in their input under different experimental conditions play a major role in recovery of function after spinal cord injury. We also hypothesize that specific activity (rehabilitation) increases both the extent of anatomical plasticity and the amount of functional recovery that occurs. The experiments proposed use high cervical spinal cord over hemi-section, transplants and neurotrophic factors to examine the nature and extent of this supraspinal reorganization and its contribution to recovery of locomotion and skilled forelimb movement. We will use anterograde and retrograde neuroanatomical tracing and quantitative morphometrics to identify the alterations in neuronal circuitry above the spinal cord injury. As models we will examine reorganization in cortical and cerebellar afferents to the red nucleus, descending and segmental input to propriospinal neurons and sensory afferents to the dorsal column nuclei and sensorimotor cortex. We also hypothesize that both the anatomical reorganization and behavioral recovery can be modified by experience and activity after injury. We will use quantitative analysis of motor function, and neuroanatomical tracing and quantitative morphometrics to determine the extent to which changes in activity alter the anatomical reorganization and alter functional recovery. Taken together, these studies will increase our understanding of the plasticity that occurs in the supraspinal circuitry after spinal cord injury and regeneration. This circuitry will play a critical role in recovery of function after spinal cord injury. A better understanding of the changes that take place within the injured CNS and how they are regulated will be important in understanding how rehabilitation strategies can increase neuroplasticity and functional recovery in humans after spinal cord injury. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
122 Spinal Cord Injury
·
Project Title: Semaphorins and Axon Regeneration in Spinal Cord Injury Principal Investigator & Institution: He, Zhigang; Children's Hospital (Boston) 300 Longwood Ave Boston, Ma 02115 Timing: Fiscal Year 2001; Project Start 1-AUG-2001; Project End 1-JUL2004 Summary: (provided by applicant): The spinal cord is the major conduit through which sensory and motor signals pass between brain and body. Damage to the spinal cord often results in devastating and persistent functional deficits. In general, adult CNS neurons can survive axotomy and react with an upregulation of proteins related to axonal growth (e.g. GAP-43). Lesioned axons can sprout spontaneously, but this regeneration attempt is transitory and no significant regrowth over long distances occurs. We are interested in understanding the cellular and molecular mechanisms that account for such abortive sprouting behaviors of regenerating axons. In addition to myelin associated inhibitors, recent studies have suggested a potential involvement of axonal repellents, such as semaphorins, in restricting axon regeneration after injury. Thus, in this study, we propose to perform a systematic study to examine if there is a correlation between semaphorin expression and axonal behaviors in spinal cord injury models. We will first characterize the terminal sprouting of lesioned axons and collateral sprouting of intact axons in two different but complementary spinal cord injury models. These axonal morphological responses will be related to the spatial and timing expression patterns of members of semaphorins and their receptor molecules in injured rat spinal cords. It is hoped that these studies will provide important insights into the potential involvement of sernaphorins in governing the postinjury axonal responses, which might be instructive for designing therapeutic strategies for spinal cord injury. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
·
Project Title: Activation of Critical Gene Sets for Spinal Axon Repair Principal Investigator & Institution: Skene, J H.; Associate Professor; Neurobiology; Duke University Durham, Nc 27706 Timing: Fiscal Year 2001; Project Start 5-JUL-2001; Project End 0-JUN2004 Summary: (provided by applicant): In order to restore connections interrupted by spinal cord injury, adult neurons must carry out modes of axon extension more typical of developing cells. Many adult neurons, however, are known to be deficient in at least some of the protein components of axonal growth cones, which mediate axon extension and
Studies 123
guidance. Successful regeneration appears to require re-expression of these and other proteins, but it is not known which growth cone components are expressed in spinal projection neurons after spinal cord injury. The current proposal is to develop a global gene expression assay that can be used to monitor the activation of a program of gene expression adequate to support axon regeneration and functional repair following spinal cord injury. The first stage of the work will use a large cDNA microarray to compare the changes in neuronal gene expression induced by spinal cord injury and by peripheral nerve damage (which elicits robust axon regeneration and functional recovery). The second aim is to determine which of these responses to axon injury reflect the activation of genes involved in axon regeneration, rather than the onset of cell death or stress responses. This analysis will employ two parallel approaches. A correlational cluster analysis of microarray data will be used to identify sets of genes most closely correlated with axon growth, while a "proteomics" profile of growth cone proteins will be used to determine which genes induced by axotomy represent the expression of proteins directly involved in axon growth. The results will show whether spinal projection neurons ordinarily initiate an effective genetic program for axon regrowth following spinal cord injury, or remain deficient in particular growth cone components. Moreover, they will establish a "molecular profile" that can be used to distinguish the modes of action of treatments designed to enhance spinal cord repair. We will test the feasibility of using this profile to determine which treatments act by stimulating neuronal genes involved in axon regrowth, and which treatments act by improving the growth-supporting properties of the spinal cord environment. Together, the proposed studies address one of the fundamental hurdles to spinal axon regeneration, and provide a tool for evaluating therapeutic strategies for spinal cord repair. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Cellular and Molecular Strategies in Spinal Cord Repair Principal Investigator & Institution: Fischer, Itzhak; Neurobiology and Anatomy; Mcp Hahnemann University Broad & Vine Sts Philadelphia, Pa 19102 Timing: Fiscal Year 2000; Project Start 1-JUL-2000; Project End 0-JUN2004 Summary: The devastating effects of spinal cord injury are due to the death of neurons and to the failure of the axons of surviving neurons to regenerate through the inhospitable environment created by the injury. The proposed experiments will test whether novel cellular and molecular strategies of repair will promote regeneration leading to locomotor and
124 Spinal Cord Injury
sensory recovery in well-characterized models of spinal cord injury in adult rats. In preliminary studies we have prepared retrovirus and recombinant adenovirus constructs of neurotrophins and shown that intraspinal transplants of fibroblasts genetically modified to express BDNF promote regeneration of rubrospinal axons that contribute to locomotor recovery. We have also used intraspinal injections of plasmid constructs and recombinant adenovirus to administer genes to spinal and supraspinal neurons that can enhance their survival and regeneration after axotomy. In the present experiments we will use as transplants multipotential neural stem cells isolated from embryonic rat spinal cord. These cells are very promising because of their capacities for selfrenewal, differentiation into neurons and glia and genetic modification. We will genetically modify these cells to express neurotrophin factors BDNF and NT3 or adhesion protein L1, and in addition deliver the antiapoptotic gene Bcl-2 by plasmid injections or adenovirus. We propose that this combination of treatments will enhance neuron survival and axon regeneration and promote the recovery of locomotor and sensory function as measured by quantitative tests. In the first series of experiments we will test the idea that engineered neural stem cells transplanted into a unilateral cervical hemisection lesion will integrate with the injured host and supply factors that will rescue axotomized spinal and supraspinal neurons, promote regeneration of their axons and enhance recovery. In the second series of experiments we will test the idea that the best strategy of combined treatments will stimulate regeneration of descending pathways and recovery of hindlimb function after spinal cord transection, a model for complete spinal cord injury in humans in which results of anatomical and behavioral studies are unambiguous. The results of these experiments will contribute to developing an effective strategy for promoting neuron survival and axon regeneration that will enhance functional recovery after spinal cord injury. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Diffusion Mri following Spinal Cord Transplantation Principal Investigator & Institution: Schwartz, Eric D.; Radiology; University of Pennsylvania 3451 Walnut Philadelphia, Pa 19104 Timing: Fiscal Year 2001; Project Start 1-AUG-2001; Project End 1-JUL2006 Summary: Research in animal models has shown promise for the development of treatments designed to promote axonal rescue and regeneration. While behavioral studies are useful in evaluating the effect of treatment on function, histology has, up to now, been the only method
Studies 125
to detect and follow axonal regeneration. Obviously, this method of evaluation will not be feasible in clinical trials. Early studies with diffusion-based MR imaging have shown that this modality has the potential to evaluate the integrity of axons. Our central hypothesis is that diffusion-based MR measurements will detect and quantify axonal survival, neuronal cell rescue and axonal regeneration following spinal cord injury and treatment in the adult rat, and that these measurements will correlate with histologic findings and predict functional outcome. The basis for this hypothesis is that structural changes following injury and regeneration affect the Apparent Diffusion Coefficients (ADC) within the spinal cord white matter tracts. The proposed project will initially evaluate ex vivo specimens to determine, by diffusion-based MR measurements, the changes in ADC within white matter tracts following spinal cord injury and treatment. The second part of this study will evaluate spinal cord injury and response to treatment in vivo with serial diffusion-based MR measurements. In both parts of the study, ADC values will be correlated with histologic and behavioral findings behavioral findings. In the future, diffusion-based MR imaging will be critical in the clinical setting where direct tissue evaluation is not possible. The data obtained in this study will translate to the clinical setting, both in determining axon disruption following injury and in evaluating the effect of treatments for spinal cord injury. As part of the mentored clinical scientist development award, the principal investigator will take a series of didactic courses in neuroscience, MR imaging physics, bioethics, and statistics. Hands-on experience will be obtained in a neuroscience lab led by a mentor with thirty years experience of researching spinal cord injury. Imaging experience will include using high resolution MR scanners and creating MR radiofrequency coils under the tutelage of a mentor with over ten years experience researching MR and spinal cord injury. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Expiratory Muscle Activation to Produce Cough Principal Investigator & Institution: Dimarco, Anthony F.; Medicine; Case Western Reserve University 10900 Euclid Ave Cleveland, Oh 44106 Timing: Fiscal Year 2000; Project Start 1-FEB-1986; Project End 1-JUL-2004 Summary: (Applicant's abstract):Patients with spinal cord injury frequently suffer from respiratory complications due to their inability to cough and clear secretions. In recent animal studies, we have demonstrated that lower thoracic spinal cord stimulation (SCS) and magnetic stimulation (MS) results in the generation of large increases in airway pressure and high peak flow rates. These techniques, therefore,
126 Spinal Cord Injury
have the potential to produce an effective cough mechanism in spinal cord injured patients. The purpose of these studies is to resolve important basic science issues concerning these techniques in animal studies. In Objective I, the efficacy of cough by these techniques will be assessed by radiolabeled clearance studies. In Objective II, the pathway(s) by which the motor nerves innervating the expiratory muscles are activated during SCS and MS will be determined. The importance of motor root activation via stimulation of spinal cord pathways will be assessed by monitoring pressure generation before and after sequential section of the ventral roots. The specific pathways responsible for pressure generation will be localized anatomically by evaluating the effects of spinal cord section. Nerve compound action potentials will also be recorded from the motor roots during stimulation. In Objective III, the electric field generated around and within the spinal cord during SCS and MS will be measured and used in conjunction with finite element analysis modeling techniques to determine optimum electrode and coil design. In Objective IV, we will characterize the changes in expiratory muscle structure and function following upper motoneuron denervation. An effective cough is dependent upon optimal function of the expiratory muscles which are most likely atrophied in patients with spinal cord injury. Therefore, we will also assess the capacity or SCS and MS to maintain expiratory muscle function in a chronic animal model of spinal cord injury. In Objective V, the safety profile of SCS will be assessed in chronic animals. The results of these studies should provide important information relevant to the potential use of these techniques in human clinical trials. Restoration of affective cough mechanism may allow patients with spinal cord injury to clear secretions more easily, reduce the incidence of respiratory complication and, ultimately, improve their life quality. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Functional Modification of Brain Neurons after Spinal Lesions Principal Investigator & Institution: Chapin, John K.; Professor; Mcp Hahnemann University Broad & Vine Sts Philadelphia, Pa 19102 Timing: Fiscal Year 2001; Project Start 1-APR-1987; Project End 0-JUN2006 Summary: (provided by applicant) The major overall aim of this Program Project is to develop strategies for restoring sensorimotor function after spinal cord injury. These strategies include transplants of genetically modified cells, and pharmacological manipulations. Even if such strategies are successful in restoring connections across a spinal cord injury, the brain may not be able to control the spinal cord circuits
Studies 127
because of the well known tendency of the CNS to "remap" after peripheral injuries. Thus, the major aim of this project is to investigate changes in the neurophysiological organization of the supraspinal sensorimotor systems after spinal cord injury, including hemisection and transection, and after transplants and pharmacological intervention. All experiments will utilize our techniques for chronically stimulating and/or recording from large populations of neurons through electrode arrays implanted in several regions of the brain. These techniques are well suited to the problem of measuring functional changes in neuronal ensembles over both short and long time periods (i.e. from seconds to months) and over difficult experimental manipulations (e.g. spinal cord injury). These electrode implants will be used to assess time-dependent changes in 1- neuronal discharge properties, 2- somatosensory maps, 3motor maps, defined by microstimulation through the same electrodes to directly evoke peripheral movements, and 4- "motor correlates" of neurons recorded during movement. Experiment induced changes in these parameters will be assessed by recording through electrode arrays chronically implanted bilaterally in the sensorimotor cortex (SMC) and red nucleus (RN) in rats. Such data will be routinely obtained from the same animals over all of the experimental manipulations described below (Aim 1: adult hemisection; Aim 2: neonatal spinal rats; Aim 3: adult spinal rats). Three questions will be addressed: 1- Do supraspinal sensorimotor system (e.g. SMC and RN) neurons exhibit a predictable time course of functional change after spinal cord injury?, 2- To what extent can these changes be prevented or reversed by transplanting genetically modified cells into the injury site, in neonates or adults?, and 3- to what extent can these changes be modified by training, such as the direct conditioning of SMC neuronal activity that we have recently demonstrated (Chapin et al., 99)? Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Functional Plasticity in the Mammalian Spinal Cord Principal Investigator & Institution: Goshgarian, Harry G.; Professor; Anatomy and Cell Biology; Wayne State University Detroit, Mi 48202 Timing: Fiscal Year 2000; Project Start 1-AUG-1993; Project End 1-DEC2003 Summary: (Applicant's abstract) The long-term objective of this research is to understand the mechanisms underlying the unmasking of latent motor pathways which restore function to muscle paralyzed by spinal cord injury. An animal model of spinal cord injury and plasticity known as the "crossed phrenic phenomenon" (CPP) is employed to demonstrate that a latent respiratory motor pathway can be activated to restore
128 Spinal Cord Injury
function to a hemidaphragm paralyzed by an ipsilateral C2 spinal cord hemisection. Based on new information, a neurotransmitter mediated neuronal-glial interaction may be partially responsible for the unmasking of the neurotransmitter mediated neuronal- glial interaction may be partially responsible for the unmasking of the latent pathway. In addition, the development of two pharmacological methods of activating the latent pathway may lead to improvement of respiratory muscle function not only in our animal model, but also in cervical spinal cord injured humans. There are four specific aims in the present application to test the following hypotheses: 1. that the delayed enhanced expression of the CPP is dependent on serotonin. 2. that serotonin depletion blocks or attenuates the rapid alterations in astrocyte morphology which may be important in the delayed enhanced expression of the CPP. 3. that continuous infusion of a glutamate metabotropic receptor agonist into the subarachnoid space near the medullary chemoreceptor center will not only induce, but also chronically maintain recovery of a hemidaphragm previously paralyzed by cervical spinal cord injury. 4. that either oral or intravenously administered theophylline will significantly improve respiratory muscle function following cervical spinal cord injury in man. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Postdoctoral Training Program in Neural Regeneration Principal Investigator & Institution: Steward, Oswald; Director; Anatomy and Neurobiology; University of California Irvine Campus Dr Irvine, Ca 92697 Timing: Fiscal Year 2001; Project Start 5-JUL-2001; Project End 0-JUN2006 Summary: (Adapted From The Abstract Provided By Applicant): The Neural Regeneration Training Program (NRTP) will provide intensive research training to post-doctoral fellows in research areas related to neuronal regeneration and plasticity, especially pertaining to spinal cord injury. The program is designed for individuals who have recently received an M.D. or an M.D./Ph.D. degree. The program will provide a broad exposure to experimental and clinical issues related to spinal cord injury. A central goal of our training program will be to produce a significant proportion of the next generation of spinal cord injury researchers. Hence, each trainee will undertake brief but intensive training in experimental approaches to spinal cord injury. During the first 23 months after initiating the program, trainees will participate in a special workshop that will cover the pathophysiology of spinal cord injury, the experimental models used, and the accepted outcome measures (both functional and anatomical). The research training will be
Studies 129
in the form of a research apprenticeship under the immediate sponsorship of one or more faculty mentors. The research apprenticeship will be supplemented by specialty seminars, journal clubs and laboratory meetings, symposia, and technical workshops. The setting (The ReeveIrvine Research Center) is remarkably rich in basic science, and at the same time guarantees exposure to clinical issues related to spinal cord injury. The Associates of the ReeveIrvine Research Center who are the mentors on this program include basic scientists and physician scientists carrying out research on nervous system injury, stroke, and neurodegenerative disorders and on basic processes that underlie nervous system development, regeneration and plasticity. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Role of LIF and NGF in Inflammation and Chronic Pain Principal Investigator & Institution: Hulsebosch, Claire E.; Professor; University of Texas Medical Br Galveston 301 University Blvd Galveston, Tx 77555 Timing: Fiscal Year 2001; Project Start 1-FEB-1974; Project End 1-JUL-2006 Summary: This project addresses the regulation of neuropeptide expression in chronic pain that appears following spinal cord injury. Such pain is often a severe affliction for the victim. A model established in our laboratories to investigate the pain that follows spinal cord injury will be utilized. In this model, pain-like behaviors that appear following hemisection of the rt spinal cord are assessed. The model reproduces the salient features of post spinal cord injury in humans. Our central hypothesis is that expression of the cytokine leukemia inhibitor factor (LIF) counteracts the development of chronic pain following spinal cord injury by increasing the expression of the neuropeptide galanin and decreasing the expression of the peptides nerve growth factor (NGF), substance and calcitonin gene related peptide. This hypothesis includes a sub-hypothesis that LIF acts on the synthesis of the latter peptides by reducing the biosynthesis of NGF. Existing evidence suggests that increased LIF reduces manifestations of pain in peripheral neuropathy and inflammation models by altering the production of neuropeptide inter cellular messengers. However, since this is unaddressed for the pain that develops following spinal cord injury, the biosynthesis of all of the above peptides and their effects on pain-like behaviors following spinal cord injury will be characterized. Time courses of effects of injury on peptide biosynthesis will be determined by analyzing peptides in tissue from the area of injury by ELISA or RIA assays and by immunocytochemistry. Roles of these peptides in pain expression will be tested by blocking their actions during times of increased expression or
130 Spinal Cord Injury
adding them when their expression is decreased, together with measuring pain-like behaviors in the experimental animals. The actions of LIF or NGF will be manipulated so as to increase peptide synthesis and then the action of that peptide will be blocked to establish whether modulation of peptide biosynthesis by LIF and NGF influences pain-like behaviors. Effects of LIF of inflammation and associated pain will also be characterized. Insights from this work will aid in developing treatments for pain that appears following spinal cord injury, currently a clinically intractable problem. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Spinal Motor Conduction and Recovery after Human SCI Principal Investigator & Institution: Calancie, Blair M.; Professor; Neurological Surgery; University of Miami Box 016159 Miami, Fl 33101 Timing: Fiscal Year 2000; Project Start 1-AUG-1997; Project End 0-APR2002 Summary: (Applicant's Abstract) Little is known about the mechanisms within the spinal cord which allow some persons with spinal cord injury to recover significant function, while others do not. We propose to conduct a series of electrophysiological and behavioral measures on persons with acute spinal cord injury who are admitted to Jackson Memorial Hospital. Subjects will be studied as many as 12 times after injury, in order to accurately define the time-course of any neurologic improvement or alteration seen. Approximately 150 subjects will be enrolled over a 5 year period. Clinical strength (through manual muscle test) and muscle electrical activity (EMG) will be recorded from multiple muscles of the arms and legs for persons with injury to the cervical spine, or from the legs in persons with injury to the thoracic or thoracolumbar spine. In addition to voluntary contractions, non-invasive magnetic stimulation of the brain will be used in some subjects to cause contractions of muscles made weak by the spinal cord injury. The size of the evoked EMG response, the time at which the response occurs, and the intensity of brain stimulation needed to cause a response will be determined for each muscle, to provide objective measures of conduction in spinal cord motor tracts. Reflex responses will be measured to estimate spinal cord excitability, and magnetic resonance images of the region of damage will be obtained at 3, 12, and 24 months after injury in a subset of individuals who have recovered some voluntary movement in the legs, in order to match changes in tissue properties (e.g. edema, myelination) with clinical function. In addition to providing valuable scientific information not currently available, this project will benefit attempts to implement clinical trials of treatment interventions for spinal cord injury
Studies 131
- trials which are now being seriously considered and for which animal studies are underway. Specifically, the information gained from the successful completion of studies proposed herein will: 1) provide some sense of a given subjects's potential for spontaneous recovery of volitional motor activity and its time-course, to help establish whether there is an optimal time post-injury to apply whatever interventions are developed; 2) contribute towards the development of objective measures for prognosis; 3) develop criteria to select the most appropriate candidates for a particular intervention; and 4) guide decisions regarding which type of intervention might be most advantageous for a certain type of injury. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
E-Journals: PubMed Central19 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).20 Access to this growing archive of e-journals is free and unrestricted.21 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “spinal cord injury” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for spinal cord injury in the PubMed Central database: ·
A study of cytokeratin 20 immunostaining in the urothelium of neuropathic bladder of patients with spinal cord injury by Subramanian Vaidyanathan, Ian W. McDicken, Anna J. Ikin, Paul Mansour, Bakul M. Soni, Gurpreet Singh, and Pradipkumar Sett; 2002 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=125297
·
Agmatine reverses pain induced by inflammation, neuropathy, and spinal cord injury by Carolyn A. Fairbanks, Kristin L. Schreiber, Kori L. Brewer, Chen-Guang Yu, Laura S. Stone, Kelley F. Kitto, H. Oanh Nguyen, Brent M. Grocholski, Don W. Shoeman, Lois J. Kehl,
Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 20 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 21 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 19
132 Spinal Cord Injury
Soundararajan Regunathan, Donald J. Reis, Robert P. Yezierski, and George L. Wilcox; 2000 September 12 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=27068 ·
CM101-mediated recovery of walking ability in adult mice paralyzed by spinal cord injury by Artur W. Wamil, Barbara D. Wamil, and Carl G. Hellerqvist; 1998 October 27 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=23754
·
Functional recovery following traumatic spinal cord injury mediated by a unique polymer scaffold seeded with neural stem cells by Yang D. Teng, Erin B. Lavik, Xianlu Qu, Kook I. Park, Jitka Ourednik, David Zurakowski, Robert Langer, and Evan Y. Snyder; 2002 March 5 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=122466
·
Key Role for Pregnenolone in Combination Therapy that Promotes Recovery After Spinal Cord Injury by L Guth, Z Zhang, and E Roberts; 1994 December 6 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=45426
·
Klippel-Feil syndrome -- the risk of cervical spinal cord injury: A case report by Subramanian Vaidyanathan, Peter L. Hughes, Bakul M. Soni, Gurpreet Singh, and Pradipkumar Sett; 2002 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=107839
·
Loss of High-Affinity Prostacyclin Receptors in Platelets and the Lack of Prostaglandin-Induced Inhibition of Platelet-Stimulated Thrombin Generation in Subjects with Spinal Cord Injury by NN Kahn, WA Bauman, and AK Sinha; 1996 January 9 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=40215
·
Malignant spinal cord compression: prospective study of delays in referral and treatment by D J Husband; 1998 July 4 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=28596
·
Protocol of a prospective cohort study of the effect of different methods of drainage of neuropathic bladder on occurrence of symptomatic urinary infection, and adverse events related to the urinary drainage system in spinal cord injury patients by Subramanian Vaidyanathan, Bhakul M. Soni, Singh Gurpreet, Paul Mansour, Peter L. Hughes, Tun Oo, Pradipkumar Sett, Keith F. Parsons, and John C. Davies; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=60970
·
Referred phantom sensations and cortical reorganization after spinal cord injury in humans by Christopher I. Moore, Chantal E. Stern,
Studies 133
Carolyn Dunbar, Sandra K. Kostyk, Anil Gehi, and Suzanne Corkin; 2000 December 19 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=18982 ·
Regional Lidocaine Infusion Reduces Postischemic Spinal Cord Injury in Rabbits by Anil Z. Apaydin and Suat Buket; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=101170
·
Survival and regeneration of rubrospinal neurons 1 year after spinal cord injury by Brian K. Kwon, Jie Liu, Corrie Messerer, Nao R. Kobayashi, John McGraw, Loren Oschipok, and Wolfram Tetzlaff; 2002 March 5 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=122504
·
The method of bladder drainage in spinal cord injury patients may influence the histological changes in the mucosa of neuropathic bladder -- a hypothesis by Subramanian Vaidyanathan, Paul Mansour, Bakul M Soni, Gurpreet Singh, and Pradipkumar Sett; 2002 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=113259
·
Unpredicted spontaneous extrusion of a renal calculus in an adult male with spina bifida and paraplegia: report of a misdiagnosis. Measures to be taken to reduce urological errors in spinal cord injury patients by Subramanian Vaidyanathan, Peter L. Hughes, Bhakul M. Soni, Gurpreet Singh, Paul Mansour, and Pradipkumar Sett; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=64578
The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.22 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.
22
134 Spinal Cord Injury
To generate your own bibliography of studies dealing with spinal cord injury, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “spinal cord injury” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “spinal cord injury” (hyperlinks lead to article summaries): ·
Sensory deprivation in spinal cord injury--an essay. Author(s): Crossman MW. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 1996 October; 34(10): 573-7. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8896121&dopt=Abstract
·
Serum cystatin C as a marker of the renal function in patients with spinal cord injury. Author(s): Thomassen SA, Johannesen IL, Erlandsen EJ, Abrahamsen J, Randers E. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 2002 October; 40(10): 524-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12235535&dopt=Abstract
·
Spinal cord injury as a complication of an acupuncture. Author(s): Shiraishi S, Goto I, Kuroiwa Y, Nishio S, Kinoshita K. Source: Neurology. 1979 August; 29(8): 1188-90. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=572512&dopt=Abstract
·
Spinal cord injury rehabilitation. 3. Functional outcomes. Author(s): Formal CS, Cawley MF, Stiens SA. Source: Archives of Physical Medicine and Rehabilitation. 1997 March; 78(3 Suppl): S59-64. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9084369&dopt=Abstract
·
Spinal cord injury: a sensory restriction perspective. Author(s): Richards JS, Hirt M, Melamed L. Source: Archives of Physical Medicine and Rehabilitation. 1982 May; 63(5): 195-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7073457&dopt=Abstract
Studies 135
·
Spinal cord injury: old problems, new approaches. Author(s): Ragnarsson KT. Source: Bull N Y Acad Med. 1986 March; 62(2): 174-81. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3486020&dopt=Abstract
·
The effect of sports on level of community integration as reported by persons with spinal cord injury. Author(s): Hanson CS, Nabavi D, Yuen HK. Source: Am J Occup Ther. 2001 May-June; 55(3): 332-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11723975&dopt=Abstract
·
The effect of therapeutic massage on H-reflex amplitude in persons with a spinal cord injury. Author(s): Goldberg J, Seaborne DE, Sullivan SJ, Leduc BE. Source: Physical Therapy. 1994 August; 74(8): 728-37. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8047561&dopt=Abstract
·
The effectiveness of vibratory stimulation in anejaculatory men with spinal cord injury. Review article. Author(s): Beckerman H, Becher J, Lankhorst GJ. Source: Paraplegia. 1993 November; 31(11): 689-99. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8295779&dopt=Abstract
·
The effects of rectal probe electrostimulation on spinal cord injury spasticity. Author(s): Halstead LS, Seager SW. Source: Paraplegia. 1991 January; 29(1): 43-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2023769&dopt=Abstract
·
The effects of taxol, methylprednisolone, and 4-aminopyridine in compressive spinal cord injury: a qualitative experimental study. Author(s): Perez-Espejo MA, Haghighi SS, Adelstein EH, Madsen R. Source: Surgical Neurology. 1996 October; 46(4): 350-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8876716&dopt=Abstract
136 Spinal Cord Injury
·
The Neuman Systems Model: application to a patient with a cervical spinal cord injury. Author(s): Foote AW, Piazza D, Schultz M. Source: J Neurosci Nurs. 1990 October; 22(5): 302-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2146336&dopt=Abstract
·
The quality of life of three functional spinal cord injury subgroups in a Swedish community. Author(s): Siosteen A, Lundqvist C, Blomstrand C, Sullivan L, Sullivan M. Source: Paraplegia. 1990 October; 28(8): 476-88. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2263404&dopt=Abstract
·
The use of complementary and alternative therapies for chronic pain following spinal cord injury: a pilot survey. Author(s): Nayak S, Matheis RJ, Agostinelli S, Shifleft SC. Source: J Spinal Cord Med. 2001 Spring; 24(1): 54-62. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11587436&dopt=Abstract
·
The use of functional electrical stimulation to assist gait in patients with incomplete spinal cord injury. Author(s): Granat M, Keating JF, Smith AC, Delargy M, Andrews BJ. Source: Disability and Rehabilitation. 1992 April-June; 14(2): 93-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1600188&dopt=Abstract
·
The Virginia Community Cadre Network: community reintegration of persons with spinal cord injury. Author(s): Wilson WC, Thompson DD. Source: Rehabil Lit. 1983 January-February; 44(1-2): 19-23. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6844705&dopt=Abstract
·
Transcutaneous nerve stimulation for treatment of pain in patients with spinal cord injury. Author(s): Davis R, Lentini R.
Studies 137
Source: Surgical Neurology. 1975 July; 4(1): 100-1. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1080891&dopt=Abstract ·
Upper extremity pain after spinal cord injury. Author(s): Dalyan M, Cardenas DD, Gerard B. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 1999 March; 37(3): 191-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10213328&dopt=Abstract
·
Use of electromyographic biofeedback during the acute phase of spinal cord injury: a case report. Author(s): Nacht MB, Wolf SL, Coogler CE. Source: Physical Therapy. 1982 March; 62(3): 290-4. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7063528&dopt=Abstract
·
Vibration-induced finger flexion reflex and inhibitory effect of acupuncture on this reflex in cervical spinal cord injury patients. Author(s): Takakura N, Iijima S, Kanamaru A, Shibuya M, Homma I, Ohashi M. Source: Neuroscience Research. 1996 December; 26(4): 391-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9004278&dopt=Abstract
·
Women with complete spinal cord injury: a phenomenological study of sexual experiences. Author(s): Tepper MS, Whipple B, Richards E, Komisaruk BR. Source: Journal of Sex & Marital Therapy. 2001 October-December; 27(5): 615-23. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11554227&dopt=Abstract
·
Epidural spinal cord compression as the initial finding in childhood acute leukemia and non-Hodgkin lymphoma. Author(s): Pui CH, Dahl GV, Hustu HO, Murphy SB.
138 Spinal Cord Injury
Source: The Journal of Pediatrics. 1985 May; 106(5): 788-92. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3858493&dopt=Abstract ·
Intrathecal baclofen and homeopathy for the treatment of painful muscle spasms associated with malignant spinal cord compression. Author(s): Thompson E, Hicks F. Source: Palliative Medicine. 1998 March; 12(2): 119-21. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9616449&dopt=Abstract
·
Primary epidural non-Hodgkin lymphoma: spinal cord compression syndrome as the initial form of presentation in childhood nonHodgkin lymphoma. Author(s): Mora J, Wollner N. Source: Medical and Pediatric Oncology. 1999 February; 32(2): 102-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9950197&dopt=Abstract
·
Spinal cord compression with paraplegia in xanthomatosis due to normocholesterolemic sitosterolemia. Author(s): Hatanaka I, Yasuda H, Hidaka H, Harada N, Kobayashi M, Okabe H, Matsumoto K, Hukuda S, Shigeta Y. Source: Annals of Neurology. 1990 September; 28(3): 390-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2241122&dopt=Abstract
·
Vincristine neuropathy with bowel and bladder atony, mimicking spinal cord compression. Author(s): Raphaelson MI, Stevens JC, Newman RP. Source: Cancer Treat Rep. 1983 June; 67(6): 604-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6305500&dopt=Abstract
Vocabulary Builder Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures.
Studies 139
[NIH]
Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH] Anorectal: Pertaining to the anus and rectum or to the junction region between the two. [EU] Anterograde: Moving or extending forward; called also antegrade. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Arginine: An essential amino acid that is physiologically active in the Lform. [NIH] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Atony: Lack of normal tone or strength. [EU] Axotomy: Transection or severing of an axon. This type of denervation is used often in experimental studies on neuronal physiology and neuronal death or survival, toward an understanding of nervous system disease. [NIH] Biosynthesis: The building up of a chemical compound in the physiologic processes of a living organism. [EU] Calcitonin: A peptide hormone that lowers calcium concentration in the blood. In humans, it is released by thyroid cells and acts to decrease the formation and absorptive activity of osteoclasts. Its role in regulating plasma calcium is much greater in children and in certain diseases than in normal adults. [NIH] Cerebellar: Pertaining to the cerebellum. [EU] Chemoreceptor: A receptor adapted for excitation by chemical substances, e.g., olfactory and gustatory receptors, or a sense organ, as the carotid body or the aortic (supracardial) bodies, which is sensitive to chemical changes in the blood stream, especially reduced oxygen content, and reflexly increases both respiration and blood pressure. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Creatine: An amino acid that occurs in vertebrate tissues and in urine. In
140 Spinal Cord Injury
muscle tissue, creatine generally occurs as phosphocreatine. excreted as creatinine in the urine. [NIH]
Creatine is
Deoxyguanosine: A nucleoside consisting of the base guanine and the sugar deoxyribose. [NIH] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Diffusion: The process of becoming diffused, or widely spread; the spontaneous movement of molecules or other particles in solution, owing to their random thermal motion, to reach a uniform concentration throughout the solvent, a process requiring no addition of energy to the system. [EU] Distal: Remote; farther from any point of reference; opposed to proximal. In dentistry, used to designate a position on the dental arch farther from the median line of the jaw. [EU] Distention: The state of being distended or enlarged; the act of distending. [EU]
Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Ejaculation: A sudden act of expulsion, as of the semen. [EU] Electromyography: Recording of the changes in electric potential of muscle by means of surface or needle electrodes. [NIH] Electrophoresis: An electrochemical process in which macromolecules or colloidal particles with a net electric charge migrate in a solution under the influence of an electric current. [NIH] Electrophysiological: Pertaining to electrophysiology, that is a branch of physiology that is concerned with the electric phenomena associated with living bodies and involved in their functional activity. [EU] Escherichia: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria whose organisms occur in the lower part of the intestine of warmblooded animals. The species are either nonpathogenic or opportunistic pathogens. [NIH] Fibroblasts: Connective tissue cells which secrete an extracellular matrix rich in collagen and other macromolecules. [NIH] Flexion: In gynaecology, a displacement of the uterus in which the organ is bent so far forward or backward that an acute angle forms between the fundus and the cervix. [EU] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Gingivitis: Inflammation of the gingivae. Gingivitis associated with bony changes is referred to as periodontitis. Called also oulitis and ulitis. [EU]
Studies 141
Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Infertility: The diminished or absent ability to conceive or produce an offspring while sterility is the complete inability to conceive or produce an offspring. [NIH] Innervation: 1. the distribution or supply of nerves to a part. 2. the supply of nervous energy or of nerve stimulus sent to a part. [EU] Intrathecal: Within a sheath. [EU] Lidocaine: A local anesthetic and cardiac depressant used as an antiarrhythmia agent. Its actions are more intense and its effects more prolonged than those of procaine but its duration of action is shorter than that of bupivacaine or prilocaine. [NIH] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Locomotor: Of or pertaining to locomotion; pertaining to or affecting the locomotive apparatus of the body. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Medullary: Pertaining to the marrow or to any medulla; resembling marrow. [EU] Mentors: Senior professionals who provide guidance, direction and support to those persons desirous of improvement in academic positions, administrative positions or other career development situations. [NIH] Microdialysis: A technique for measuring extracellular concentrations of substances in tissues, usually in vivo, by means of a small probe equipped with a semipermeable membrane. Substances may also be introduced into the extracellular space through the membrane. [NIH] Mucosa: A mucous membrane, or tunica mucosa. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty
142 Spinal Cord Injury
or discipline. [NIH] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neurosurgery: A surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord, and peripheral and sympathetic nervous system. [NIH] Palliative: 1. affording relief, but not cure. 2. an alleviating medicine. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Pelvic: Pertaining to the pelvis. [EU] Percutaneous: Performed through the skin, as injection of radiopacque material in radiological examination, or the removal of tissue for biopsy accomplished by a needle. [EU] Perineal: Pertaining to the perineum. [EU] Peroxidase: A hemeprotein from leukocytes. Deficiency of this enzyme leads to a hereditary disorder coupled with disseminated moniliasis. It catalyzes the conversion of a donor and peroxide to an oxidized donor and water. EC 1.11.1.7. [NIH] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Prophylaxis: The prevention of disease; preventive treatment. [EU] Pseudomonas: A genus of gram-negative, aerobic, rod-shaped bacteria widely distributed in nature. Some species are pathogenic for humans, animals, and plants. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Reflux: A backward or return flow. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any
Studies 143
substance produced by secretion. [EU] Somatostatin: A polypeptide hormone produced in the hypothalamus, and other tissues and organs. It inhibits the release of human growth hormone, and also modulates important physiological functions of the kidney, pancreas, and gastrointestinal tract. Somatostatin receptors are widely expressed throughout the body. Somatostatin also acts as a neurotransmitter in the central and peripheral nervous systems. [NIH] Spermatozoa: Mature male germ cells that develop in the seminiferous tubules of the testes. Each consists of a head, a body, and a tail that provides propulsion. The head consists mainly of chromatin. [NIH] Staphylococcus: A genus of gram-positive, facultatively anaerobic, coccoid bacteria. Its organisms occur singly, in pairs, and in tetrads and characteristically divide in more than one plane to form irregular clusters. Natural populations of Staphylococcus are membranes of warm-blooded animals. Some species are opportunistic pathogens of humans and animals. [NIH]
Subarachnoid: Situated or occurring between the arachnoid and the pia mater. [EU] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Urogenital: Pertaining to the urinary and genital apparatus; genitourinary. [EU]
Urothelium: The epithelial lining of the urinary tract. [NIH] Xanthomatosis: A condition of morphologic change in which there is accumulation of lipids in the large foam cells of tissues. It is the cutaneous manifestation of lipidosis in which plasma fatty acids and lipoproteins are quantitatively changed. The xanthomatous eruptions have several different distinct morphologies dependent upon the specific form taken by the disease. [NIH]
Patents 145
CHAPTER 5. PATENTS ON SPINAL CORD INJURY Overview You can learn about innovations relating to spinal cord injury by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.23 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available to patients with spinal cord injury within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available to patients with spinal cord injury. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.
23Adapted
from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.
146 Spinal Cord Injury
Patents on Spinal Cord Injury By performing a patent search focusing on spinal cord injury, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on spinal cord injury: ·
Treatment of and/or prophylaxis against brain and spinal cord injury Inventor(s): Meyerhoff; James L. (Silver Spring, MD), Long; Joseph (Clarksville, MD), Koenig; Michael (Silver Spring, MD) Assignee(s): The United States of America as represented by the Secretary of the Army (Washington, DC) Patent Number: 6,432,434 Date filed: April 21, 2000 Abstract: The administration of .alpha.-lipoic acid (.alpha.LA) and dihydrolipoic acid (DHL) both as a preventive measure before exposure to conditions which may cause damage, such as rapid changes in atmospheric pressure, and as a means of preventing or ameliorating damage arising from such injury provides benefits not currently available. The active agents may be administered systemically or to the injured tissue. For example, when there is spinal cord injury, the active agents may be administered intrathecally. Excerpt(s): This invention relates to the field of prevention of damage arising from spinal cord injury and trauma to the brain, including that which occurs secondary to decompression sickness (DCS). ... Alpha lipoic acid (.alpha.LA) is an antioxidant currently used clinically to treat diabetic neuropathy. It has been shown to be clinically safe and was shown to be neuroprotective against ischemia-reperfusion injury in both the rat and the gerbil. It was also effective against NMDA and malonic acid lesions of striatum in rats. However, its effects in preventing or ameliorating damage arising because of pathologies and trauma to the spinal cord or trauma-induced injury to the brain, including spinal cord injury secondary to decompression sickness (DCS), has not been known. ... Presently, post-injury treatment of spinal cord injury is most likely to
Patents 147
include administration of the steroid methylprednisolone for 24 to 48 hours to reduce swelling and inflammation. In patients with accidentrelated acute spinal cord injury, clinical outcome at 6 months was improved in those receiving this steroid within eight hours of injury compared with placebo-treated patients. Unfortunately, there is some evidence that glucocorticoids (GC's) can exacerbate the excitotoxic phase of neural injury. Postulated mechanisms of GC-mediated synergy with excitotoxic effects of glutamic acid include: (1) glucocorticoides inhibit reuptake inactivation of synaptic glutamic acid, thereby increasing synaptic glutamic acid levels and/or (2) glucocorticoids inhibit calcium removal from the postsynaptic neuron. Web site: http://www.delphion.com/details?pn=US06432434__ ·
Methods of inhibiting locomotor damage following spinal cord injury with .alpha. D-specific antibodies Inventor(s): Gallatin; W. Michael (Mercer Island, WA), Van der Vieren; Monica (Snohomish, WA) Assignee(s): ICOS Corporation (Bothell, WA) Patent Number: 6,432,404 Date filed: October 13, 2000 Abstract: Methods to treat spinal cord injury using .alpha..sub.d monoclonal antibodies are disclosed. Excerpt(s): The invention also provides methods for inhibiting macrophage infiltration at the site of a central nervous system injury comprising the step of administering to an individual an effective amount of an anti-.alpha..sub.d monoclonal antibody. In one aspect, the methods comprise use of an anti-.alpha..sub.d monoclonal antibody that blocks binding between .alpha..sub.d and a binding partner. In one embodiment, the binding partner is VCAM-1. In a preferred embodiment, the anti-.alpha..sub.d monoclonal antibody is selected from the group consisting of the monoclonal antibody secreted by hybridoma 226H and the monoclonal antibody secreted by hybridoma 236L. In a most preferred embodiment, methods of the invention are for a central nervous system injury which is a spinal cord injury. ... The invention further provides methods for reducing inflammation at the site of a central nervous system injury comprising the step of administering to an individual an effective amount of an anti-.alpha..sub.d monoclonal antibody. In one aspect, the methods comprise use of an anti.alpha..sub.d monoclonal antibody that blocks binding between .alpha..sub.d and a binding partner. In one embodiment, the binding
148 Spinal Cord Injury
partner is VCAM-1. In a preferred embodiment, the anti-.alpha..sub.d monoclonal antibody is selected from the group consisting of the monoclonal antibody secreted by hybridoma 226H and the monoclonal antibody secreted by hybridoma 236L. In a most preferred embodiment, methods of the invention are for a central nervous system injury which is a spinal cord injury. ... The invention also provides methods for inhibiting macrophage infiltration at the site of a central nervous system injury comprising the step of administering to an individual an effective amount of a small molecule that inhibits .alpha..sub.d binding. In particular, the methods of the invention comprising a central nervous system injury which is a spinal cord injury. Small molecules specific for .alpha..sub.d binding are identified and isolated from libraries as discussed above. Web site: http://www.delphion.com/details?pn=US06432404__ ·
Method for the prevention of ischemic spinal cord injury caused by aortic crossclamping Inventor(s): Lazdunski; Michel (Nice, FR), Lang-Lazdunski; Loic (Neuilly, FR), Heurteaux; Catherine (Antibes, FR) Assignee(s): Centre National de la Recherche Scientifique CNRS (Paris, FR) Patent Number: 6,239,156 Date filed: April 28, 2000 Abstract: The present invention pertains to a method for the reduction of glutamate neurotoxicity in pathophysiology of spinal cord injury induced by aortic cross-clamping. The reduction is achieved by the administration of riluzole to a patient, in an amount effective to reduce glutamate neurotoxicity, contemporaneously with aortic cross-clamping. Preferably, the riluzole is administered both prior to and following the aortic crossclamping. The method is also applicable to reduce the spinal cord injury resulting from ischemia, and for reducing the effects of ischemia on neuronal tissues. Excerpt(s): The present invention relates to the prevention or reduction of glutamate neurotoxicity in the pathophysiology of spinal cord injury induced by aortic crossclamping. ... The present invention pertains to a method for the reduction of glutamate neurotoxicity in pathophysiology of spinal cord injury induced by aortic cross-clamping. The reduction is achieved by the administration of riluzole to a patient, in an amount effective to reduce glutamate neurotoxicity, contemporaneously with aortic cross-clamping. Preferably, the riluzole is administered both prior
Patents 149
to and following the aortic cross-clamping. The method is also applicable to reduce the spinal cord injury resulting from ischemia, and for reducing the effects of ischemia on neuronal tissues. ... It has been determined that riluzole administered before or after aortic occlusion was helpful in preserving the structural integrity of the spinal cord in a well-established model of severe ischemia. Furthermore, riluzole can prevent ischemiainduced apoptosis and degradation of microtubule-associated protein 2 (MAP2), a cytoskeletal protein responsible for maintaining the structural integrity of the neuron and an early marker of cytoplasmic damage induced by spinal cord injury. Web site: http://www.delphion.com/details?pn=US06239156__ ·
Method for producing non-human animal having spinal cord injury Inventor(s): Mori; Atsuo (Rejidensu TOYOUKE Tsuruta 203, 2810-9, Tsurutamachi, Utsunomiya-shi, Tochigi-ken, JP) Assignee(s): none reported Patent Number: 5,993,779 Date filed: August 28, 1997 Abstract: A method for producing a non-human animal suffering from a spinal cord injury, which comprises interrupting an aorta at least at two sites, thereby forming an isolated segment of the aorta including branched parts of radicular arteries feeding the spinal cord between the sites of interruption, bringing the spinal cord to ischemia, and regionally administering glutamic acid or aspartic acid to the segment and a method for evaluating a medicament for treating a spinal cord injury due to glutamic acid or aspartic acid, which comprises interrupting an aorta of a non-human animal at least at two sites, thereby forming an isolated segment of the aorta including branched parts of redicular arteries feeding the spinal cord between the sites of interruption, bringing the spinal cord to ischemia, and regionally administering glutamic acid or aspartic acid together with a medicament for treating a spinal cord injury to the segment or a method for evaluating a medicament for treating a spinal cord injury due to glutamic acid or aspartic acid, which comprises administering a medicament for treating a spinal cord injury to a nonhuman animal produced according to the above method. Excerpt(s): The present invention relates to a method for producing an animal suffering from a spinal cord injury such as paraplegia, etc. due to the neurotoxicity of glutamic acid or aspartic acid and also a method for evaluating a medicament for treating a spinal cord injury, which can protect nerves by attenuating the neurotoxicity of glutamic acid or
150 Spinal Cord Injury
aspartic acid. ... Spinal cord injury such as paraplegia, etc. is a serious complication of thoracoabdominal aortic aneurysm operation, and particularly the prevalence of postoperative paraplegia has been reported to range from 5% to 20%, depending on the site and extent of the aortic aneurysm and the presence or absence of aortic dissection. Numerous improvements of surgical operative techniques and pharmacological spinal cord protections have been proposed for preventing occurrence of paraplegia, but no methods have been established yet for completely avoiding this dreadful complication. ... That is, it has been desired to make studies on the clarification of complicated pathophysiologic mechanism and causes of the disease as to the spinal cord injury such as paraplegia, etc. and also to make studies on development, etc. of medicaments for treating the disease, particularly studies on provision of test animals suffering from spinal cord injury such as paraplegia, etc. due to a specific cause of disease and also on provision of a method for evaluating medicaments targeted at the specific cause of disease. Up to now, it has been reported that nerve degeneration and paraplegia occur in spinal cords of rabbits subjected to infrarenal aortic isolation for 15 to 20 minutes (MARTINEZ-ARIZALA, A., J, B. LONG, D. D. RIGGAMONTI, J. M. KRAIMER, et al, 1989, Deteriorating stroke model of spinal ischemia in the rabbit is associated with a marked hyperemia, Neurology 39 (Suppl 1): 371-372), but the rabbits have not been clarified yet as to the causes for paraplegia, etc., and thus are not always to serve as preferable test animals for the above-mentioned evaluation purpose. Web site: http://www.delphion.com/details?pn=US05993779__ ·
Apparatus for reduction of spasticity in male and female patients having spinal cord injury as well as obtaining semen from males by stimulation of ejaculatory nerves Inventor(s): Seager; Stephen W. J. (10301 Norton Rd., Potomac, MD 20854), Halstead; Lauro S. (3522 Woodbine St., Chevy Chase, MD 20815) Assignee(s): none reported Patent Number: 5,199,442 Date filed: May 20, 1991 Abstract: Apparatus for treatment of spasticity by electrical stimulation in male and female patients having spinal cord injury. The apparatus is likewise adapted to stimulate ejaculatory nerves in the male through ejaculation and is characterized by an electronic stimulator which delivers current by rectal probe to the prostate and seminal vesicle glands
Patents 151
in serial variance of since wave voltage. In both male and female treatment of spasticity, substantially similar apparatus is employed. Excerpt(s): Sexual dysfunction in males suffering from spinal cord injury, SCI and other neurological conditions such as multiple sclerosis is well known. Impotence is the most common problem, but inability to ejaculate may also occur. Whereas those suffering from impotency may obtain penile prosthesis implantation or intracavernous injection therapy, those with anejaculation, nonetheless, are infertile. Until the present invention, no therapy has been available for this condition. To reduce spasticity in both males and females afflicted with SCI is likewise an objective of invention. Similar problems arise in females suffering from SCI. ... After experimentation with electroejaculation in various species of animals and following many years of experience working with animals, a study was initiated in 1985 using this technique to obtain semen in neurologically impaired men. The first subjects were men with spinal cord injury, hereinafter SCI; later electroejaculation was applied to men suffering from other neurological conditions; these include men who have had a retroperitoneal lymph node dissection, and those suffering from multiple sclerosis, adult diabetes and other non-specific anejaculatory disorders. The main research effort has been directed towards those with SCI. To date over 3,000 electroejaculation procedures have been applied to 250 men. The levels of injury for these SCI men have ranged from C3 to L2 with the majority being in the thoracic area and the injuries being complete. The overall success rate in obtaining an ejaculate, be it antigrade or retrograde, has been in the order of 80%. Working with those suffering from thoracic SCI lesions, there is approximately a 90% success rate in obtaining an ejaculate. If this latter group, some 75% will have an ejaculate considered sufficient quality for artificial insemination by inter-uterine deposition of washed spermatoza. Using the hereinafter described equipment and technique with SCI men, there have been 40 reported pregnancies in the U.S. Europe. Also a live birth in a couple where the husband has multiple sclerosis and a further two where the husbands had retroperitoneal lumph node dissections following surgical treatment for testicular cancer. ... Whereas the first subjects were men with spinal cord injury or SCI, with the knowledge gained in this group. Electroejaculation has been applied to men suffering from other neurological conditions. Not only has this included men who have had a retroperitoneal lymph node dissection, but also those suffering from multiple sclerosis, adult diabetes and other non-specific anejaculatory disorders. The levels of injury for the SCI men have ranged from C4 to L4, the majority being in the thoracic area and the injuries being complete. The overall success rate in obtaining an ejaculate, be it antigrade or retrograde has been of the order of 80%. Those suffering
152 Spinal Cord Injury
from thoracic SCI lesions have had approximately a 90% success rate in obtaining an ejaculate. Of this latter group, some 82% will have an ejaculate considered of sufficient quality for artificial insemination by inter-uterine deposition of washed spermatozoa in vitro fertilization or similar procedure. The range of ages has been from 18 to 49 years of age. Length of time from injury to first electroejaculation procedure has ranged from six months to thirty-six years. Web site: http://www.delphion.com/details?pn=US05199442__ ·
Method for treating spinal cord injury Inventor(s): Gainer, Jr.; James V. (Kingwood, WV) Assignee(s): The University of Virginia (Charlottesville, VA) Patent Number: 4,009,270 Date filed: November 21, 1975 Abstract: A method for the treatment of spinal cord injuries in a mammal which comprises administering to said stricken mammal an effective dose of a water soluble carotenoid, or prophylactically treating a mammal which is expected to undergo spinal cord injury, such as prior to surgical procedures in the vicinity or on the spinal cord, which comprises administering to said mammal an effective dose of a water soluble carotenoid. Excerpt(s): Spinal cord injury is a condition characterized by contusion of the neural tissue with resultant decrease or loss of its ability to function properly and transmit nerve impulses. The usual cause is due to an impact injury of some nature, but it may also occur during the manipulation attendant to certain surgical procedures. The early changes which occur are hemorrhagic and ischemic lesions which appear in central portions (gray matter) of the spinal cord. Initially, the periphery of the cord will show only occasional small hemorrhages in the usual case. With time the white matter in the periphery of the spinal cord will develop progressive edema, leading eventually to necrosis of this area. ... A number of investigators in recent years have demonstrated that the sequential pathologic changes following spinal cord injury involve alterations of vascular dynamics and progressive ischemia. The edema and necrosis which follow have been considered to be secondary changes, resulting from ischemia. Experimentally, certain modalities of therapy which have involved providing a relative increase in available oxygen have been shown to be of benefit. Hyperbaric oxygenation was studied by Kelly, DL Jr., Lassiter, KRL, Vongsvivut, A, Smith, JM: Effects of hyperbaric oxygenation and tissue oxygen studies in experimental
Patents 153
paraplegia. J. Neurosurg. 36:425-429, 1972 and shown to be beneficial. Hypothermia by means of localized spinal cord cooling has been effective in various studies. By this method, a decrease in cellular metabolic needs would result in a decreased oxygen need. Dexamethasone has heretofor been shown to improve the functional result: Black, P. Markowitz, RA: Experimental spinal cord injury in monkeys: comparison of steroids and local hypothermia. Surg Forum. 22:409-411, 1971. ... Since utilization of these compounds should produce a net increase in available oxygen at the capillary endothelial level, it seemed that it might have some efficacy in the therapy of spinal cord injury. Web site: http://www.delphion.com/details?pn=US04009270__
Patent Applications on Spinal Cord Injury As of December 2000, U.S. patent applications are open to public viewing.24 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years). The following patent applications have been filed since December 2000 relating to spinal cord injury: ·
Thrombomodulin analogs for use in recovery of spinal cord injury Inventor(s): Festoff, Barry W. ; (Kansas City, MO), Morser, Michael John ; (San Francisco, CA) Correspondence: Wendy L. Washtien; Berlex Biosciences, Inc.; 15049 San Pablo Avenue; P.O. Box 4099; Richmond; CA; 94804-0099; US Patent Application Number: 20020111296 Date filed: August 23, 2001 Abstract: The present invention relates to the use of thrombomodulin analogs for the treatment of trauma-induced spinal cord injury. Excerpt(s): The present invention relates to a method of using analogs of thrombomodulin in the treatment of the neurologic trauma associated with spinal cord injury in mammals. ... Spinal cord injury (SCI) is a serious condition which produces life-long disabilities (Stover et al., Paraplegia (1987), 24:225-228). Only limited therapeutic measures are currently available for its treatment (Bracken et al., New Engl. J. Med. (1990), 322:1405-1411). In fact, the most commonly accepted acute intervention after SCI, other than surgery, is administration of the steroid, methylprednisolone (MP) (Hall, E. D., Adv. Neurol. (1993), 59: 241-8; Bracken, M. B., J. Neurosurg. (2000), 93:175-9; Bracken, M. B., Cochrane
24
This has been a common practice outside the United States prior to December 2000.
154 Spinal Cord Injury
Database Syst. Rev. 2 (2000); Koszdin, et al., Anesthesiology (2000), 92:156-63). However, after 10 years of experience this treatment is still quite controversial and a recent meta analysis has suggested that treatment with MP may actually be contraindicated (Hurlbert, R. J., J. Neurosurg. (2000), 93:1-7; Pointillart, et al., Spinal Cord (2000), 38:71-6; Lankhorst, et al., Brain Res. (2000), 859:334-40). ... A further aspect of this invention is directed to a pharmaceutical composition useful in treating neurologic damage resulting from spinal cord injury in a mammal, which pharmaceutical composition comprises a pharmaceutical excipient and a therapeutically effective amount of a soluble, recombinant thrombomodulin analog which is resistant to oxidation and wherein the methionine at position 388 has been replaced with a leucine, wherein the analog is numbered in accordance with native thrombomodulin (SEQ ID NO: 2). Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·
Method of controlling spasticity by implants in spinal cord injury Inventor(s): Craggs, Michael ; (London, GB), Knight, Sarah Louise ; (Hertfordshire, GB) Correspondence: William C. Rowland; Burns, Doane,; Swecker & Mathis, L.L.P.; P.O. Box 1404; Alexandria; VA; 22313-1404; US Patent Application Number: 20020019650 Date filed: July 3, 2001 Abstract: A method of controlling spasticity in patients having spinal cord injury (SCI) includes applying electrical stimuli to the sensory and motor sacral nerve pathways at one or more of the S1 to S4 levels by electrodes connected directly to the respective nerve roots and monitoring the resulting muscle activity. Excerpt(s): This invention relates to a method and apparatus for controlling lower limb spasticity by implants in spinal cord injury. ... Spasticity is a common and distressing manifestation of neurological damage resulting from spinal cord injury (SCI) and leads to violent lower limb spasms. There are about 700 new spinal injuries in Britain each year, with a total population of sufferers of about 40,000. Injuries of this kind are commonly caused by road accidents and of new patients, the greatest proportion are young people who, with good care and management, can expect to live a normal life span. Therefore, to enable these young people to reintegrate into society and have a good quality of life and reach their full potential, there is a need for a new and innovative method for restoring functions. ... According to one aspect of the present invention
Patents 155
there is provided a method of controlling spasticity in patients having spinal cord injury (SCI) which comprises applying electrical stimuli to the sensory and motor sacral nerve pathways at one or more of the lumbarsacral levels of the spine, especially the S2 to S4 levels. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html
Keeping Current In order to stay informed about patents and patent applications dealing with spinal cord injury, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “spinal cord injury” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on spinal cord injury. You can also use this procedure to view pending patent applications concerning spinal cord injury. Simply go back to http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.
Vocabulary Builder Aneurysm: A sac formed by the dilatation of the wall of an artery, a vein, or the heart. The chief signs of arterial aneurysm are the formation of a pulsating tumour, and often a bruit (aneurysmal bruit) heard over the swelling. Sometimes there are symptoms from pressure on contiguous parts. [EU]
Aorta: The main trunk of the systemic arteries. [NIH] Arteries: The vessels carrying blood away from the heart. [NIH] Capillary: Any one of the minute vessels that connect the arterioles and venules, forming a network in nearly all parts of the body. Their walls act as semipermeable membranes for the interchange of various substances, including fluids, between the blood and tissue fluid; called also vas capillare. [EU]
Excipient: Any more or less inert substance added to a prescription in order to confer a suitable consistency or form to the drug; a vehicle. [EU]
156 Spinal Cord Injury
Hyperbaric: Characterized by greater than normal pressure or weight; applied to gases under greater than atmospheric pressure, as hyperbaric oxygen, or to a solution of greater specific gravity than another taken as a standard of reference. [EU] Implantation: The insertion or grafting into the body of biological, living, inert, or radioactive material. [EU] Impotence: The inability to perform sexual intercourse. [NIH] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Leucine: An essential branched-chain amino acid important for hemoglobin formation. [NIH] Medicament: A medicinal substance or agent. [EU] Methionine: A sulfur containing essential amino acid that is important in many body functions. It is a chelating agent for heavy metals. [NIH] Oxygenation: The process of supplying, treating, or mixing with oxygen. No:1245 - oxygenation the process of supplying, treating, or mixing with oxygen. [EU] Postoperative: Occurring after a surgical operation. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Prostate: A gland in males that surrounds the neck of the bladder and the urethra. It secretes a substance that liquifies coagulated semen. It is situated in the pelvic cavity behind the lower part of the pubic symphysis, above the deep layer of the triangular ligament, and rests upon the rectum. [NIH] Riluzole: A glutamate antagonist that has reported anticonvulsant activity. It has been shown to prolong the survival of patients with amyotrophic lateral sclerosis and has been approved in the United States to treat patients with ALS. [NIH] Synaptic: Pertaining to or affecting a synapse (= site of functional apposition between neurons, at which an impulse is transmitted from one neuron to another by electrical or chemical means); pertaining to synapsis (= pairing off in point-for-point association of homologous chromosomes from the male and female pronuclei during the early prophase of meiosis). [EU] Testicular: Pertaining to a testis. [EU] Thrombomodulin: A cell surface glycoprotein of endothelial cells that binds thrombin and serves as a cofactor in the activation of protein C and its regulation of blood coagulation. [NIH]
Books 157
CHAPTER 6. BOOKS ON SPINAL CORD INJURY Overview This chapter provides bibliographic book references relating to spinal cord injury. You have many options to locate books on spinal cord injury. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on spinal cord injury include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.
Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “spinal cord injury” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on spinal cord injury:
158 Spinal Cord Injury
·
Fitness and Rehabilitation Programs for Special Populations Source: Dubuque, IA, WCB Brown and Benchmark, 326 p., 1994. Contact: WCB Brown and Benchmark, 2460 Kerper Boulevard, Dubuque, IA 52001. Summary: Fitness and Rehabilitation Programs for Special Populations provides exercise specialists with the materials necessary to develop safe and effective exercise programs for special populations. As individuals with disabilities begin to understand the benefits of an active lifestyle and are more fully integrated into society, exercise specialists can expect to see an increase in the number of these persons accessing their community-based fitness centers. At the same time, health care professionals such as physicians, physical and occupational therapists, and nurses are starting to implement more cardiovascular fitness programs in hospitals, outpatient clinics, retirement centers, and nursing home facilities. The textbook is divided into nine chapters. Following the first chapter, which deals with an overview of general exercise physiology concepts, there are eight chapters addressing specific disabilities or health limitations, including aging, arthritis, obesity, diabetes, asthma and chronic obstructive pulmonary disease, spinal cord injury, mental retardation, and pregnancy. Each chapter covers three basic areas: (1) An overview of the physiology and/or pathophysiology of the condition, (2) a compendium of selected research on each disability or health limitation, and (3) a translation of the research into practical exercise guidelines and activities to facilitate program development. Much of the information presented has been carefully sorted into concise tables for quick access and easy referral, and general exercise guidelines and special activities are provided at the end of each chapter.
Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ).
Books 159
The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “spinal cord injury” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:25 ·
Clinical science of neurologic rehabilitation. Author: Bruce H. Dobkin; Year: 2003; New York: Oxford University Press, 2003; ISBN: 0195150643 (cloth: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0195150643/icongroupin terna
·
Development of the human spinal cord: an interpretation based on experimental studies in animals. Author: Joseph Altman, Shirley A. Bayer; Year: 2001; Oxford; New York: Oxford University Press, 2001; ISBN: 0195144279 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0195144279/icongroupin terna
·
Electrodiagnosis in diseases of nerve and muscle: principles and practice. Author: Jun Kimura; Year: 2001; New York: Oxford University Press, 2001; ISBN: 0195129776 (cloth: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0195129776/icongroupin terna
·
Endovascular and percutaneous therapy of the brain and spine. Author: editors, Michael P. Marks, Huy M. Do; Year: 2002; Philadelphia: Lippincott Williams ; Wilkins, 2002; ISBN: 078173035X http://www.amazon.com/exec/obidos/ASIN/078173035X/icongroupi nterna
In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.
25
160 Spinal Cord Injury
·
Functions of the brain. Author: David Ferrier; with a note on the author by Nicholas J. Wade; Year: 1886; London: Routledge/Thoemmes Press, 2000; ISBN: 0415228395 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0415228395/icongroupin terna
·
Handbook of diagnostic and therapeutic spine procedures. Author: [edited by] Alan L. Williams, F. Reed Murtagh; Victoria, CMI, medical illustrator; Year: 2002; St. Louis: Mosby, c2002; ISBN: 0323017177 http://www.amazon.com/exec/obidos/ASIN/0323017177/icongroupin terna
·
Human brain [electronic resource]: dissections of the real brain. Author: Terence H. Williams, Nedzad Gluhbegovic, Jean Y. Jew; Year: 2000; [Iowa City, Iowa]: University of Iowa, 2000
·
ICRAN 99: International Conference on recent advances in neurotraumatology, Taipei, Taiwan, ROC, November 20-23, 1999. Author: editor, Wen-Ta Chiu; Year: 1999; Bologna, Italy: Monduzzi Editore, International Proceedings Division, 1999; ISBN: 8832311208
·
Lectures on the localisation of cerebral and spinal diseases. Author: Jean M. Charcot; with a note on the author by Nicholas J. Wade; Year: 1883; London: Routledge/Thoemmes Press, 2000; ISBN: 0415228395 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0415228395/icongroupin terna
·
Magnetic resonance imaging of the brain and spine. Author: editor, Scott W. Atlas; Year: 2002; Philadelphia: Lippincott Williams ; Wilkins, c2002; ISBN: 0781720362 http://www.amazon.com/exec/obidos/ASIN/0781720362/icongroupin terna
·
Mechanisms and mediators of neuropathic pain. Author: Annika B. Malmberg, Sandra R. Chaplan, editors; Year: 2002; Basel; Boston: Birkhauser Verlag, c2002; ISBN: 3764362375 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3764362375/icongroupin terna
·
Motor neurobiology of the spinal cord. Author: edited by Timothy C. Cope; Year: 2001; Boca Raton: CRC Press, c2001; ISBN: 0849300061 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0849300061/icongroupin terna
·
Myelopathy, radiculopathy, and peripheral entrapment syndromes. Author: David H. Durrant, Jerome M. True; with John W. Blum, Jr. ... [et
Books 161
al]; Year: 2002; Boca Raton: CRC Press, c2002; ISBN: 0849300363 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0849300363/icongroupin terna ·
Neural plasticity and regeneration. Author: edited by Fredrick J. Seil; Year: 2000; Amsterdam; New York: Elsevier, 2000; ISBN: 0444502092 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0444502092/icongroupin terna
·
Neuroscience: exploring the brain. Author: Mark F. Bear, Barry W. Connors, Michael A. Paradiso; Year: 2001; Baltimore, Md.: Lippincott Williams ; Wilkins, c2001; ISBN: 0683305964 http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupin terna
·
Nursing practice related to spinal cord injury and disorders: a core curriculum. Author: editor, Audrey Nelson; associate editors, Cynthia P. Zejdlik, Linda Love; Year: 2001; Jackson Heights, NY: Eastern Paralyzed Veterans Association: American Association of Spinal Cord Injury Nurses, c2001; ISBN: 0970887310 http://www.amazon.com/exec/obidos/ASIN/0970887310/icongroupin terna
·
Omentum: application to brain and spinal cord. Author: edited by Harry S. Goldsmith; Year: 2000; Wilton, CT: Forefront Publishing, c2000; ISBN: 0967493307 http://www.amazon.com/exec/obidos/ASIN/0967493307/icongroupin terna
·
Pocket atlas of normal spine MRI. Author: Leo F. Czervionke; Year: 2001; Philadelphia: Lippincott Williams ; Wilkins, c2001; ISBN: 0781729483 http://www.amazon.com/exec/obidos/ASIN/0781729483/icongroupin terna
·
Rehabilitation of people with spinal cord injury. Author: Shanker Nesathurai, editor; Year: 2000; Malden, Mass.: Blackwell Scientific, c2000; ISBN: 0632045264 http://www.amazon.com/exec/obidos/ASIN/0632045264/icongroupin terna
·
Research on neurological and communication disorders [microform]: hearing before a subcommittee of the Committee on Appropriations, United States Senate, One Hundred Fifth Congress, first session, special hearing. Author: United States. Congress. Senate. Committee on Appropriations. Subcommittee on Departments of Labor, Health and
162 Spinal Cord Injury
Human Services, Education, and Related Agencies; Year: 1998; Washington: U.S. G.P.O.: For sale by the U.S. G.P.O., Supt. of Docs., Congressional Sales Office, 1998 ·
Spinal cord injured patient. Author: edited by Bok Y. Lee and Lee E. Ostrander; Year: 2002; New York: Demos, c2002; ISBN: 188879951X (alk. paper) http://www.amazon.com/exec/obidos/ASIN/188879951X/icongroupi nterna
·
Spinal cord injuries. Author: Elaine Landau; Year: 2001; Berkeley Heights, NJ: Enslow Publishers, c2001; ISBN: 0766014746 http://www.amazon.com/exec/obidos/ASIN/0766014746/icongroupin terna
·
Spinal cord injury: functional rehabilitation. Author: Martha Freeman Somers; Year: 2001; Upper Saddle River, N.J.: Prentice Hall, c2001; ISBN: 0838586163 (hard cover) http://www.amazon.com/exec/obidos/ASIN/0838586163/icongroupin terna
·
Spinal cord injury: impact and coping. Author: Clive A. Glass; Year: 1999; Leicester, UK: BPS Books, 1999; ISBN: 1854333011
·
Spinal cord injury desk reference: guidelines for life care planning and case management. Author: Terry L. Blackwell ... [et al.]; Year: 2001; New York: Demos, c2001; ISBN: 1888799498 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1888799498/icongroupin terna
·
Spinal cord injury pain: assessment, mechanisms, management. Author: editors, Robert P. Yezierski, Kim J. Burchiel; Year: 2002; Seattle: IASP Press, c2002; ISBN: 0931092434 http://www.amazon.com/exec/obidos/ASIN/0931092434/icongroupin terna
·
Spinal cord medicine: principles and practice. Author: editor-in-chief, Vernon W. Lin; associate editors, Diana D. Cardenas ... [et al.]; Year: 2002; New York, N.Y.: Demos, c2002; ISBN: 1888799617 (hardcover) http://www.amazon.com/exec/obidos/ASIN/1888799617/icongroupin terna
·
Spinal cord medicine. Author: editors, Steve Kirshblum, Denise I. Campagnolo, Joel A. DeLisa; Year: 2002; Philadelphia: Lippincott Williams ; Wilkins, c2002; ISBN: 078172869X http://www.amazon.com/exec/obidos/ASIN/078172869X/icongroupi nterna
Books 163
·
Spinal cord plasticity: alterations in reflex function. Author: edited by Michael M. Patterson, James W. Grau; Year: 2001; Boston: Kluwer Academic Publishers, c2001; ISBN: 0792374452 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0792374452/icongroupin terna
·
Treatment of pulmonary disease following cervical spinal cord injury. Author: prepared by Duke Evidence-based Practice Center, Center for Clinical Health Policy Research, Douglas C. McCrory, principal investigator; Gregory P. Samsa ... [et al.], investigators;; Year: 2001; Rockville, MD: U.S. Dept. of Health and Human Services, Public Health Service, Agency for Healthcare Research and Quality, [2001]; ISBN: 1587630672
Chapters on Spinal Cord Injury Frequently, spinal cord injury will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with spinal cord injury, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and spinal cord injury using the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “spinal cord injury” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on spinal cord injury: ·
Current Status and Future of Penile Prosthesis Surgery Source: in Carson, C.C., III. Urologic Prostheses: The Complete Practical Guide to Devices, Their Implantation, and Patient Follow up. Totowa, NJ: The Humana Press, Inc. 2002. p. 155-170. Contact: Humana Press, Inc. 999 Riverview Dr., Suite 208 Totowa, NJ 07512. (973) 256-1699. Fax (973) 256-8341. E-mail:
[email protected] Price: $125.00, plus shipping and handling. ISBN: 0896038947. Summary: This chapter on the current status and future of penile prosthetic surgery is from a text that was compiled to provide a broad view of prosthetic devices used in urologic surgery. The author discusses the different types of penile prostheses (including a brief history); reconstruction using penile prosthesis; Peyronie disease; corpus
164 Spinal Cord Injury
cavernosum fibrosis and priapism (prolonged, painful erection); penile prosthesis implantation after radical prostatectomy (removal of the prostate); penile prosthesis and spinal cord injury; penile reconstruction; and the use of the artificial urinary sphincter (AUS). The author concludes that patients with erectile dysfunction who fail less invasive alternatives can be reconstructed and return to normal sexual function with penile prosthesis implantation using either inflatable or noninflatable devices. Patient and partner acceptance, use, and satisfaction have been reported better than other alternatives including pharmacologic (drug) injection. Inflatable devices are more frequently used than semirigid rods, their complication rates continue to decline, and patient satisfaction rates continue to rise. 8 figures. 38 references. ·
Neurostimulation Source: in Corcos, J.; Schick, E., eds. Urinary Sphincter. New York, NY: Marcel Dekker, Inc. 2001. p. 553-563. Contact: Available from Marcel Dekker, Inc. Cimarron Road, P.O. Box 5005, Monticello, NY 12701. (800) 228-1160 or (845) 796-1919. Fax (845) 796-1772. E-mail:
[email protected]. International E-mail:
[email protected]. Website: www.dekker.com. Price: $225.00 plus shipping and handling. ISBN: 0824704770. Summary: Dysfunction of the urinary sphincter is a common finding in various neurogenic diseases. Indeed, any injury or disease that is associated with paralysis of the lower limbs can affect the behavior of the urinary sphincter. Besides these problems with a proved neurological basis, a vast number of patients suffer from lower urinary tract dysfunction. The use of electronic means (neurostimulation) to control storage and evacuation of urine has become an important tool in urological treatment. This chapter on neurostimulation is from a textbook that presents a detailed and systematic account of the current knowledge on the anatomy, physiology, functional relationships, and range of dysfunctions that affect the urinary sphincter. The clinical use of electrical stimulation in dysfunction of the lower urinary tract can be divided into four categories: to treat incontinence caused by lack of activity of the striated muscles of the urethral closure mechanism by improving contraction of the sphincter mechanism; to overcome incontinence caused by detrusor (bladder muscle) hyperactivity or urethral instability by reducing detrusor instability or controlling urethral activity; to permit urine evacuation in patients with a paraplegic bladder by provoking detrusor contractions; and to manage urination in the hyperreflex bladder by combining dampening of spontaneous reflex excitability of the bladder with controlled activiation of the detrusor. Three different
Books 165
forms can be used: direct stimulation of the efferent nerves to the lower urinary tract with a direct cause and effect; activation of reflex activity by the stimulation of afferent nerves; or an indirect or modulatory effect on the behavior of some elements of the lower urinary tract by the electrical stimulation of other structures. The author also discusses the use of electrical stimulation in spinal cord injury. 74 references. ·
Neuropathic Bladder Disorders Source: in Tanagho, E.A. and McAninch, J.W., eds. Smith's General Urology. Fifteenth Edition. Columbus, OH: McGraw-Hill, Inc. 2000. p. 498-515. Contact: Available from McGraw-Hill. Medical Publishing. 1221 P.O. Box 182615, Columbus, OH 43272-5046. (800) 262-4729. Price: $54.95;plus shipping and handling. ISBN: 0838586074. Summary: This chapter on neuropathic bladder disorders is from a textbook that offers a practical and concise guide to the understanding, diagnosis, and treatment of urologic diseases. The authors note that the urinary bladder is probably the only visceral smooth muscle organ that is under complete voluntary control from the cerebral cortex (brain). Normal bladder function requires coordinated interaction of sensory and motor components of both the somatic and autonomic nervous systems. Recent advances in the understanding of neural pathways and neurotransmitters have shown that most levels of the nervous system are involved in the regulation of voiding function. The authors discuss normal vesical function, including anatomy and physiology, innervation and neurophysiology, and urodynamic studies; abnormal vesical function, including classification of neuropathic bladder, spinal shock and recovery of vesical function after spinal cord injury, diagnosis of neuropathic bladder, spastic neuropathic bladder, mildly spastic neuromuscular dysfunction, flaccid and (atonic) bladder; the differential diagnosis of neuropathic bladder; treatment options; and complications of neuropathic bladder. The authors note that the treatment of any form of neuropathic bladder is guided by the need to restore low pressure activity to the bladder. In doing so, renal (kidney) function is preserved, continence restored, and infection more readily controlled. 4 figures. 1 table. 70 references.
·
When All Else Fails: Urinary Reconstruction and Diversion Source: in Blaivas, J.G. Conquering Bladder and Prostate Problems: The Authoritative Guide for Men and Women. New York, NY: Plenum Publishing Corporation. 1998. p. 257-268.
166 Spinal Cord Injury
Contact: Available from Kluwer Academic-Plenum Publishing Corporation. 233 Spring Street, New York, NY 10013-1578. (800) 221-9369 or (212) 620-8035. Fax (212) 647-1898. Website: www.plenum.com. Price: $26.95. ISBN: 0306458640. Summary: Despite the best efforts of physicians and surgeons, sometimes the bladder or the urethra has been so severely damaged that the person is rendered hopelessly incontinent. These circumstances are quite rare and occur almost exclusively in certain situations: in people severely disabled by neurologic diseases such as spinal cord injury and multiple sclerosis; when the urethra has been destroyed by surgeries, infection, or tumor; when the bladder or urethra has been damaged during childbirth; and when the bladder or urethra must be surgically removed as part of treatments for cancer. In these situations, urinary reconstruction or diversion may be used for treatment. This chapter on urinary reconstruction and diversion is from a book for people who have urinary bladder and prostate problems: people who urinate too often, who plan their daily activities around the availability of a bathroom, men with prostate problems, women with incontinence, and people with bladder pain. The book is written in a clear, nontechnical, humorous style that makes the material more accessible to the lay reader. Cystoplasty is an operation that uses whatever is remaining of the bladder and urethra to reconstruct the basic functions; cystoplasty is performed by using a segment of the intestines to augment to bladder. The net result of the cystoplasty is a reservoir that stores large volumes of urine at low pressure. Many people are not able to urinate adequately after this procedure and must empty their bladder with intermittent self catheterization. The author describes two kinds of urinary diversions (urinary reservoirs and urinary conduits) that are used when the bladder or urethra cannot be incorporated at all. A urinary reservoir uses a segment of the intestine; urination is accomplished through a new urethra or through intermittent self catheterization. A urinary conduit provides drainage of urine to a small opening in the skin, called a stoma. The author discusses postoperative care and potential complications of each type of surgery. ·
Extracorporeal Shock Wave Lithotripsy Source: in Graham, S.D., Jr., et al., eds. Glenn's Urologic Surgery. 5th ed. Philadelphia, PA: Lippincott Williams and Wilkins. 1998. p. 985-992. Contact: Available from Lippincott Williams and Wilkins. P.O. Box 1600, Hagerstown, MD 21741. (800) 638-3030 or (301) 714-2300. Fax (301) 8247390. Website: lww.com. Price: $199.00 plus shipping and handling. ISBN: 0397587376.
Books 167
Summary: The introduction of extracorporeal shock wave lithotripsy (ESWL) in the early 1980s revolutionized the treatment of urinary tract calculi (stones). The use of ESWL, in conjunction with percutaneous nephrolithotomy (removal of stones through small openings in the skin) and ureteroscopy (use of the cystoscope to manage ureteral stones), has relegated open stone surgery to historical status at most institutions. This chapter on ESWL is from an exhaustive textbook on urologic surgery. The authors present the principles of ESWL as established on the HM3 (Dornier Aerospace Company, Germany) and also mention other machines when technique is altered. The authors provide a general approach to the ESWL patient, discuss problem areas and contraindications for ESWL, and briefly discuss the potential for future developments in ESWL technology. The indications for surgical intervention for stone disease traditionally were obstruction, symptoms, infection, bleeding, loss of renal function, and failure of appropriate medical management. As with any less invasive procedure, the indications for intervention with ESWL have broadened to include stones that have a high likelihood of becoming symptomatic and those causing questionable symptomatology. The authors discuss preoperative evaluation and preparation, anesthesia, patient positioning, stenting and manipulating the stone, and special circumstances, including spinal cord injury patients, morbidly obese patients, and pediatric patients. Most of the postoperative complications associated with ESWL treatment are related to the passage of stone fragments. Roughly 5 to 10 percent of patients will develop renal colic, and most of the remainder will have some minor degree of flank pain. Stone composition has a marked effect on the degree of stone fragmentation. 3 figures. 5 tables. 15 references. ·
Disorders of the Control of Bladder Contractility Source: in Kursh, E.D. and McGuire, E.J. Female Urology. Philadelphia, PA: Lippincott-Raven Publishers. 1994. p. 75-81. Contact: Available from Lippincott-Raven Publishers. P.O. Box 1600, Hagerstown, MD 21741. (800) 638-3030 or (301) 714-2300. Fax (301) 8247390. Price: $108.00 plus shipping. ISBN: 039751154X. Summary: This chapter on disorders of the control of bladder contractility is from a textbook of female urology, designed to enhance the education of urologists, gynecologists, or any other physicians caring for women. Topics include neural etiology; neural lesions; treatment options; spinal cord injury or disease; multiple sclerosis; urodynamic monitoring; and peripheral lesions. 7 references.
168 Spinal Cord Injury
Directories In addition to the references and resources discussed earlier in this chapter, a number of directories relating to spinal cord injury have been published that consolidate information across various sources. These too might be useful in gaining access to additional guidance on spinal cord injury. The Combined Health Information Database lists the following, which you may wish to consult in your local medical library:26 ·
Resources for People with Disabilities and Chronic Conditions Source: Lexington, MA: Resources for Rehabilitation. 1996. 288 p. Contact: Available from Resources for Rehabilitation. 33 Bedford Street, Suite 19A, Lexington, MA 02173. (617) 862-6455; Fax (617) 861-7517. Price: $49.95 plus shipping and handling. ISBN: 0929718178. Summary: This book is a resource guide covering many common conditions, including spinal cord injury, low back pain, diabetes, multiple sclerosis, hearing and speech impairments, visual impairment and blindness, and epilepsy. Each chapter includes information about the disease or condition, psychological aspects of the condition, professional service providers, environmental adaptations, assistive devices, and descriptions of related organizations and publications. Also included is information on rehabilitation services, independent living, self-help, laws that affect people with disabilities, making everyday life easier, children with disabilities, computer bulletin boards, and resources on the Internet. The book concludes with an organization name index. (AA-M).
You will need to limit your search to “Directories” and spinal cord injury using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find directories, use the drop boxes at the bottom of the search page where “You may refine your search by”. For publication date, select “All Years”, select language and the format option “Directory”. By making these selections and typing in “spinal cord injury” (or synonyms) into the “For these words:” box, you will only receive results on directories dealing with spinal cord injury. You should check back periodically with this database as it is updated every three months. 26
Books 169
General Home References In addition to references for spinal cord injury, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Adams & Victor’s Principles Of Neurology by Maurice Victor, et al; Hardcover - 1692 pages; 7th edition (December 19, 2000), McGraw-Hill Professional Publishing; ISBN: 0070674973; http://www.amazon.com/exec/obidos/ASIN/0070674973/icongroupinterna · Clinical Neuroanatomy Made Ridiculously Simple (MedMaster Series, 2000 Edition) by Stephen Goldberg; Paperback: 97 pages; 2nd edition (February 15, 2000), Medmaster; ISBN: 0940780461; http://www.amazon.com/exec/obidos/ASIN/0940780461/icongroupinterna · It’s Not a Tumor!: The Patient’s Guide to Common Neurological Problems by Robert Wiedemeyer; Paperback: (January 1996), Boxweed Pub; ISBN: 0964740796; http://www.amazon.com/exec/obidos/ASIN/0964740796/icongroupinterna · Neurology for the Non-Neurologist by William J. Weiner (Editor), Christopher G. Goetz (Editor); Paperback (May 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0781717078; http://www.amazon.com/exec/obidos/ASIN/0781717078/icongroupinterna
Vocabulary Builder Calculi: An abnormal concretion occurring mostly in the urinary and biliary tracts, usually composed of mineral salts. Also called stones. [NIH] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Colic: Paroxysms of pain. This condition usually occurs in the abdominal region but may occur in other body regions as well. [NIH] Contractility: stimulus. [EU]
Capacity for becoming short in response to a suitable
Erection: The condition of being made rigid and elevated; as erectile tissue when filled with blood. [EU] Evacuation: An emptying, as of the bowels. [EU] Extracorporeal: Situated or occurring outside the body. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU]
170 Spinal Cord Injury
Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Lithotripsy: The destruction of a calculus of the kidney, ureter, bladder, or gallbladder by physical forces, including crushing with a lithotriptor through a catheter. Focused percutaneous ultrasound and focused hydraulic shock waves may be used without surgery. Lithotripsy does not include the dissolving of stones by acids or litholysis. Lithotripsy by laser is lithotripsy, laser. [NIH] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Preoperative: Preceding an operation. [EU] Priapism: Persistent abnormal erection of the penis, usually without sexual desire, and accompanied by pain and tenderness. It is seen in diseases and injuries of the spinal cord, and may be caused by vesical calculus and certain injuries to the penis. [EU] Symptomatology: 1. that branch of medicine with treats of symptoms; the systematic discussion of symptoms. 2. the combined symptoms of a disease. [EU]
Ureteroscopy: Endoscopic examination, therapy or surgery of the ureter. [NIH]
Multimedia 171
CHAPTER 7. MULTIMEDIA ON SPINAL CORD INJURY Overview Information on spinal cord injury can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on spinal cord injury. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.
Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on spinal cord injury is the Combined Health Information Database. You will need to limit your search to “video recording” and “spinal cord injury” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “spinal cord injury” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on spinal cord injury:
172 Spinal Cord Injury
·
Oral Care Management of Persons with Movement Disorders Source: Seattle, WA: Dental Education in Care of Persons with Disabilities (DECOD), University of Washington. 1997. (videocassette). Contact: Available from Dental Education in Care of Persons with Disabilities (DECOD). Continuing Dental Education, Box 357137, University of Washington, Seattle, WA 98195-6370. (206) 543-5448. Fax (206) 685-3164. Price: $95.00 plus shipping and handling. Summary: For persons with movement disorders, maintaining oral health can make a significant difference in their quality of life. Yet, the provision of oral health care to persons with such conditions can be a challenge for the patient, the caregiver, and the dental professional. This videotape is designed for audiences who wish to learn more about oral home care as well as for those treating patients with unanticipated or uncontrolled movements in the dental office setting. Filmed in dental clinic settings with actual patients, the program covers oral care for persons with an array of neuromotor dysfunctions, including cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis, spinal cord injury, Parkinson's disease, and chronic mental illness. The program addresses issues in communication, positioning, control of pain and anxiety, primitive reflexes, airway protection, stabilization of the head, bruxism, oral hygiene, and use of oral chemotherapeutic agents and adaptive aides. In each of these areas, effective management techniques are demonstrated. The program also offers practical instruction in methods of preventive oral care for persons with self-care ability as well as those dependent on caregivers. (AA-M).
Bibliography: Multimedia on Spinal Cord Injury The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in spinal cord injury (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on spinal cord injury. For more information, follow the hyperlink indicated:
Multimedia 173
·
Acute care of patients with spinal cord injuries. Source: AREN; Year: 1995; Format: Videorecording; Carrollton, TX: Westcott Communications, [1995]
·
Aging with a spinal cord injury: progression of a patient at Rancho Los Amigos. Source: Rehab Training Network; Year: 1995; Format: Videorecording; Pittsburgh, PA: Rehab Training Network, c1995
·
Anterior decompression & fusion of the cervical spine. Source: by H. Bohlman; Year: 1992; Format: Videorecording; Rosemont, Ill.: AAOS, c1992
·
Back pain. Source: Time Life Medical; produced in association with Sonalysts Studios; Year: 1996; Format: Videorecording; New York, NY: Patient Education Media, c1996
·
Comprehensive spine review. Source: CMEVideo, Inc., CME Information Services, Inc.; sponsored by the National Center for Advanced Medical Education, November 8-12, 1995; Year: 1995; Format: Videorecording; Mt. Laurel, NJ: CMEVideo, 1995
·
Daniel Ruge, MD. Source: American Association of Neurological Surgeons; Year: 1983; Format: Videorecording; [Park Ridge, Ill.]: The Association, c1983
·
Head and spine trauma. Source: produced by American Safety Video Publishers, a division of Mosby-Year Book, Inc., in cooperation with Scott Bourn Associates; Year: 1995; Format: Videorecording; St. Louis, Mo.: Mosby-Year Book, c1995
·
Home dental care for children and young adults with cerebral palsy and spinal cord injuries. Source: the University of Michigan; Year: 1983; Format: Videorecording; [Ann Arbor, Mich.]: The University, c1983
·
Inductive signals and the control of neural cell fate. Source: Thomas M. Jessell; Year: 1997; Format: Sound recording; [Bethesda, Md.: National Institutes of Health, 1997]
·
Lower limb and back. Source: [presented by] Wolfe Publishing; produced by Clinical Vision Ltd. for Wolfe Publishing Ltd; Year: 1991; Format: Videorecording; [London]: Wolfe Pub., c1991
·
Lower motor neurons. Source: [by Paul A. Young ... et al.]; Year: 1995; Format: Electronic resource; St. Louis, MO: Practical Anatomy and Surgical Technique Workshop of St. Louis, c1995
·
Medical aspects of disabilities. Spinal cord injury . Year: 1995; Format: Videorecording; [Logan, Utah]: Vocational Rehabilitation Distance Learning Project, Utah State University; [Stillwater, Okla.]: National Clearinghouse of Rehabilitation Training Materials [distributor], c1995
174 Spinal Cord Injury
·
Minds of medicine. [videorecording]. Year: 2000; Format: Spine; [Detroit, Mich.]: Henry Ford Medical System, c2000
·
Neuroanatomy. 3, The spinal cord, meninges, and blood supply . Year: 1997; Format: Electronic resource; [Buckinghamshire, England?]: Anatomy Project; New York: Parthenon Pub. Group, c1997
·
Neurochemistry of altered pain states. Source: Medical Arts and Photography Branch; Year: 1998; Format: Videorecording; [Bethesda, Md.: National Institutes of Health, 1998]
·
Neurosurgery in an overseas general hospital. Source: [presented by] the United States Army; Year: 1951; Format: Motion picture; United States: War Dept., 1951
·
Neurosurgical nursing: spinal cord injury. Year: 1995; Format: Electronic resource; Baltimore, Md.: Williams ; Wilkins, [1995]
·
Nursing management of the patient with spinal cord injury. Source: [presented by] Mosby; Samuel Merritt College, Studio Three Productions; Year: 1996; Format: Videorecording; St. Louis, MO: Mosby-Year Book, c1996
·
On my feet again. Source: a presentation of Films for the Humanities & Sciences; a Touch Productions film for BBC; Year: 1996; Format: Videorecording; Princeton, N.J.: Films for the Humanities ; Sciences, c1996
·
Spinal cord injury & disease: update '91. Source: CME Conference Video, Inc.; sponsored by University of Washington School of Medicine, in conjunction with the Departments of Rehabilitation Medicine at Harborview Medical Center and University; Year: 1991; Format: Videorecording; Cherry Hill, NJ: CME Conference Video, c1991
·
Spinal cord injury. Source: PMD Press; Year: 1990; Format: Videorecording; [Orlando, FL]: Paul M. Deutsch Press, c1990
·
Spinal cord trauma. Source: produced by American Safety Video Publishers, produced in cooperation with Scott Bourn Associates, Inc. and American College of Emergency Physicians; Year: 1995; Format: Videorecording; [St. Louis, Mo.]: Mosby-Year Book, c1995
·
Spinal cord, the meninges, and the blood supply . Year: 1991; Format: Videorecording; London: SITV, c1991
·
Spinal impact. Source: a presentation of Films for the Humanities & Sciences; prepared for TLC by Advanced Medical Productions, Inc; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities ; Sciences, c2000
·
Spinous process splitting laminoplasty using hydroxyapatite spacer. Source: American Academy of Orthopaedic Surgeons; Department of
Multimedia 175
Orthopaedics, Hirosaki University; Year: 1996; Format: Videorecording; [Rosemont, Ill.]: AAOS, c1996 ·
Talking about sexual issues and spinal cord injury. Source: [presented by] British Columbia Rehabilitation Society [and] G.F. Strong Centre; Year: 1990; Format: Videorecording; Vancouver: The Society: The Centre, c1990
·
Tethered cord. Source: the University of Texas Medical School at Houston; produced by UT-TV, Houston; Year: 1992; Format: Videorecording; [Houston, Tex.: UT/TV], c1992
·
Thoracoabdominal aortic aneurysm repair with spinal cord cooling. Source: [presented by] American College of Surgeons, Ciné-Med; Year: 1997; Format: Videorecording; Woodbury, CT: Ciné-Med, 1997
·
Toughest break: Martin's story. Source: a presentation of Films for the Humanities & Sciences; produced in association with British Columbia Film; Accolade Productions Ltd; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities ; Sciences, c2000
·
Urologic implications of spinal disease. Source: American Academy of Orthopaedic Surgeons [and] the Cleveland Clinic Foundation; Year: 1984; Format: Slide; [Chicago, Ill.]: The Academy, [1984]
Vocabulary Builder Bruxism: A disorder characterized by grinding and clenching of the teeth. [NIH]
Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Stabilization: The creation of a stable state. [EU]
Periodicals and News 177
CHAPTER 8. PERIODICALS AND NEWS ON SPINAL CORD INJURY Overview Keeping up on the news relating to spinal cord injury can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on spinal cord injury. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover spinal cord injury beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.
News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on spinal cord injury is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.
178 Spinal Cord Injury
PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “spinal cord injury” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire: ·
Funding for Spinal Cord Injury Research Relies on Grassroots Efforts; Creative Fundraising Connects Communities to Causes Summary: St. Louis, Sept. 26 /PRNewswire/ -- For the past seven years, the progress of Christopher Reeve has been chronicled from prognosis to rehabilitation. However, there are hundreds of thousands of "everyday people" whose lives have been equally affected by spinal cord injury, but do not have the benefit of celebrity status and wealth. They face the same obstacles, but lack the resources to afford better care and the public profile necessary to raise awareness of their cause. Due to recent cuts in government spending for medical research, alternative fundraising methods are emerging. The growing trend of grassroots fundraising can be attributed to the public's rising dedication to facilitate access to quality healthcare for those in need. With tens of thousands of Americans affected by spinal cord injury annually, more families are taking grassroots fundraising and public awareness into their own hands as a way to help their loved ones. For example, Lou Sengheiser's focus changed entirely in 1994 after his 17year-old son Jason was injured in a fall and faced life in a wheelchair as a quadriplegic. Lou knew that with the brilliant medical minds across the country, there had to be more -- there had to be hope. After speaking with top researchers and physicians in the field, he learned that the biggest obstacle to advancing research was a lack of funding. He quickly took action, and with the support of his family, quit his job and founded Gateway to a Cure, a non-profit dedicated to raising funds for spinal cord injury research.
Periodicals and News 179
The organization has one goal and one vision -- to raise enough awareness and money to find a cure so that Jason, and others with spinal cord injury, may one day walk again. "It's a struggle for people with spinal cord injury to adjust to life in a wheelchair without losing hope," said Jason Sengheiser, currently in his final year of law school. "The support of my family and the community's dedication to fund spinal cord research have given me confidence that I will overcome this challenge and achieve my goals." To raise funds, Lou focuses on making charitable giving an exciting, twoway activity that engages supporters at a personal level. Rather than stuffy annual dinners or typical silent auctions, Gateway to a Cure raffles off sports cars, luxury homes, vacation condominiums and college scholarships. To date, the organization has raised more that two million dollars, and Lou and a small staff of volunteers continue to provide hope through research for thousands of families struggling with spinal cord injury. After listening to the thousands of supporters who have helped build the organization, Lou has designed a fundraiser that appeals to athletes and outdoor enthusiasts. Gateway to a Cure currently is raffling a luxury ski condominium at the prestigious Mountain Thunder Lodge in Breckenridge, Colo., along with nearly 75 other prizes. A decade ago, there was little hope of finding a cure for spinal cord injury, but through creative fundraising efforts like the Breckenridge condominium raffle, the outlook for finding a cure has changed. "The remarkable progress of Christopher Reeve has been invaluable in shining the national spotlight on spinal cord injury research," said Lou Sengheiser. "We must support the national cause at the community level to sustain this momentum to ensure that we find a cure." For more information about Gateway to a Cure or spinal cord injury, visit http://www.gatewaytoacure.org . St. Louis-based Gateway to a Cure is a registered 501 (c)(3) nonprofit dedicated to raising public awareness and financial support for spinal cord injury research. Gateway to a Cure advocates accessibility and opportunity for people with spinal cord injury, and provides support and education for SCI families. Tickets are available on-line at http://www.gatewaytoacure.org , or by calling Gateway to a Cure at 314.544.2410.
180 Spinal Cord Injury
Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to spinal cord injury. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “spinal cord injury” (or synonyms). The following was recently listed in this archive for spinal cord injury: ·
White cells may help repair spinal cord injury Source: Reuters Health eLine Date: November 04, 1999 http://www.reuters.gov/archive/1999/11/04/eline/links/19991104elin 006.html
·
Functional Health Status Predicts Life Satisfaction In Spinal Cord Injury Patients Source: Reuters Medical News Date: April 24, 1998 http://www.reuters.gov/archive/1998/04/24/professional/links/19980 424clin005.html
·
Cognitive-Behavioral Therapy Beneficial After Spinal Cord Injury Source: Reuters Medical News Date: April 16, 1998 http://www.reuters.gov/archive/1998/04/16/professional/links/19980 416clin007.html
·
Snowboarders At Risk For Spinal Cord Injury Source: Reuters Health eLine Date: March 19, 1998 http://www.reuters.gov/archive/1998/03/19/eline/links/19980319elin 010.html
·
Fetal Nerve Transplant Attempted In Treatment Of Spinal Cord Injury Source: Reuters Medical News Date: July 15, 1997 http://www.reuters.gov/archive/1997/07/15/professional/links/19970 715clin006.html
·
Longer Steroid Therapy Improves Acute Spinal Cord Injury Outcome Source: Reuters Medical News Date: May 28, 1997 http://www.reuters.gov/archive/1997/05/28/professional/links/19970 528clin004.html
Periodicals and News 181
·
Etidronate Slows Bone Loss In Ambulatory Patients After Spinal Cord Injury Source: Reuters Medical News Date: March 25, 1997 http://www.reuters.gov/archive/1997/03/25/professional/links/19970 325clin005.html
·
Eicosanoids Involved In Secondary Ischemia And Edema Following Spinal Cord Injury Source: Reuters Medical News Date: October 24, 1996 http://www.reuters.gov/archive/1996/10/24/professional/links/19961 024clin009.html
·
X-Irradiation After Spinal Cord Injury Results In Some Functional Recovery Source: Reuters Medical News Date: October 01, 1996 http://www.reuters.gov/archive/1996/10/01/professional/links/19961 001scie002.html
·
New Hope For Spinal Cord Injury Source: Reuters Health eLine Date: July 25, 1996 http://www.reuters.gov/archive/1996/07/25/eline/links/19960725elin 001.html
The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.
Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name.
182 Spinal Cord Injury
Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “spinal cord injury” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about. Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “spinal cord injury” (or synonyms). If you know the name of a company that is relevant to spinal cord injury, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.
BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “spinal cord injury” (or synonyms).
Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “spinal cord injury” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is
Periodicals and News 183
updated every 3 months. The following is a typical result when searching for newsletter articles on spinal cord injury: ·
Chronic Pain and Disability of Whiplash May Be Prevented by Prompt Administration of a Drug Used in Spinal Cord Injury Source: Lifeline: The Newsletter of the National Chronic Pain Outreach Association. p. 15-16. Summer 1999. Contact: Available from National Chronic Pain Outreach Association. P.O. Box 274, Millboro, VA 24460. (540) 862-9437. Fax (540) 862-9485. Email:
[email protected]. Summary: This newsletter article for health professionals and people who have chronic pain reports on the use of a drug used in spinal cord injury to prevent chronic pain and disability of whiplash. Whiplash is an extension/flexion injury to the neck that frequently occurs from a rear hit motor vehicle accident. A study has found that methylprednisolone (MPS), a powerful synthetic corticosteroid, may help prevent chronic pain and other symptoms following whiplash. Patients participating in the study received either high-dose MPS or placebo. At 6 month followup there was a significant difference in prevalence of disabling symptoms between the treated and placebo groups. No one in the MPS group was still on sick leave, but four participants in the placebo group were still on sick leave and taking analgesics daily for neck and radiating pain in their arms. Early initiation of treatment with MPS is crucial because posttraumatic decrease in blood flow to the injury site results in decreased MPS uptake. Although high-dose MPS cannot be recommended for whiplash patients until additional studies are conducted, a single 30 milligram per kilogram dose of MPS is virtually without harmful effects.
Academic Periodicals covering Spinal Cord Injury Academic periodicals can be a highly technical yet valuable source of information on spinal cord injury. We have compiled the following list of periodicals known to publish articles relating to spinal cord injury and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on spinal cord injury published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site:
184 Spinal Cord Injury
www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on spinal cord injury: ·
Current Opinion in Neurology. (Curr Opin Neurol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Cu rrent+Opinion+in+Neurology&dispmax=20&dispstart=0
·
Journal of Neurosurgery. (J Neurosurg) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Neurosurgery&dispmax=20&dispstart=0
·
Journal of Rehabilitation Research and Development. (J Rehabil Res Dev) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Rehabilitation+Research+and+Development&dispmax=20&dis pstart=0
·
Medical and Pediatric Oncology. (Med Pediatr Oncol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=M edical+and+Pediatric+Oncology&dispmax=20&dispstart=0
·
Neuroscience Research. (Neurosci Res) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ne uroscience+Research&dispmax=20&dispstart=0
·
Palliative Medicine. (Palliat Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Pa lliative+Medicine&dispmax=20&dispstart=0
Periodicals and News 185
·
Physical Therapy. (Phys Ther) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ph ysical+Therapy&dispmax=20&dispstart=0
Vocabulary Builder Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU]
Physician Guidelines and Databases 187
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.
NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Neurological Disorders and Stroke (NINDS); neurological disorder information pages available at http://www.ninds.nih.gov/health_and_medical/disorder_index.htm
188 Spinal Cord Injury
NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.27 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:28 ·
Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html
·
HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html
·
NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html
·
Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/
·
Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html
·
Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html
Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 28 See http://www.nlm.nih.gov/databases/databases.html. 27
Physician Guidelines and Databases 189
·
Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/
·
Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html
·
Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html
·
Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html
·
MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html
·
Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html
·
Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html
While all of the above references may be of interest to physicians who study and treat spinal cord injury, the following are particularly noteworthy.
The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and spinal cord injury using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “spinal cord injury” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with spinal cord injury. The following is a sample result:
190 Spinal Cord Injury
·
Progress and Promise, 1992: A Status Report on the NINDS Implementation Plan for the Decade of the Brain Source: Bethesda, MD: National Institute of Neurological Disorders and Stroke. 1992. 50 p. Contact: National Institute of Neurological Disorders and Stroke. Information Office Building 31, 9000 Rockville Pike, Bethesda, MD 20892. (800) 352-9424. Summary: This status report reviews the National Advisory Neurological Disorders and Stroke Council's implementation plan and summarizes progress made in basic and clinical research on neurological disorders. It discusses the major areas of research opportunity, recommendations to the National Institute of Neurological Disorders and Stroke for research objectives in the Decade of the Brain, and resources needed to initiate and fully implement these efforts over the next several years. Future plans and budgets are presented for study in inherited disorders; cerebral palsy and other developmental disorders; epilepsy; traumatic brain and spinal cord injury; stroke and cerebrovascular disease; brain tumors; and various diseases that cause the brain to fail such as Alzheimer's disease, multiple sclerosis, and Parkinson's disease. Other topics include the effects of alcohol and drugs on the brain, pain control, and restoring and repairing brain function. Recommendations for research are presented for each of the areas discussed, including increases in funding and total operating budgets required.
·
Prevention and Management of Urinary Tract Infections in Paralyzed Persons: Summary, Evidence Report/Technology Assessment No. 6 Source: Silver Spring, MD: Agency for Health Care Policy and Research, U.S. Department of Health and Human Services. 1999. 3 p. Contact: Available from AHCPR Publications Clearinghouse. P.O. Box 8547, Silver Spring, MD 20907-8547. (800) 358-9295. TDD (888) 586-6340. Website: www.ahcpr.gov. AHCPR Publication Number 99-E007. Price: Single copy free; also available at website. Summary: This document summarizes the results found by a 13 member panel of experts, consumers, and a managed care organization representative, convened to analyze the evidence on selected aspects of the prevention and management of urinary tract infections (UTIs) in paralyzed persons. The two populations most commonly affected are persons having spinal cord injury (SCI) and people with multiple sclerosis (MS). Eighty percent of persons with SCI experience a UTI by their 16th year post injury, and diseases of the urinary system are overall the fifth most common primary or secondary cause of death in this
Physician Guidelines and Databases 191
population. Between 70 to 90 percent of persons with MS develop bladder dysfunction over the course of their disease, placing them at increased risk for UTIs. The panel utilized a literature review to address three areas: the signs, symptoms, and laboratory findings that are associated with risks to persons with paralysis due to neurogenic bladder; the risk factors for recurrent UTIs; and the risks and benefits of long term use of antibiotic prophylaxis. Risk factors can include febrile (fever) episodes in earlier years (before the UTIs), the presence of certain bacteria or of multiple organisms early after SCI, and indwelling catheterization (which is associated with more frequent infections than intermittent catheterization). Antibiotic prophylaxis significantly reduces bacteriuria among acute spinal cord injury patients; however, antibiotic prophylaxis results in a twofold increase in the occurrence of antibiotic resistant bacteria. The report concludes by calling for additional research and by providing the availability information for the full evidence report from which this summary was taken.
The NLM Gateway29 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.30 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.31 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “spinal cord injury” (or Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 31 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 29 30
192 Spinal Cord Injury
synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 348687 Books / Periodicals / Audio Visual 2576 Consumer Health 294 Meeting Abstracts 2575 Other Collections 87 Total 354219
HSTAT32 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.33 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.34 Simply search by “spinal cord injury” (or synonyms) at the following Web site: http://text.nlm.nih.gov.
Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 34 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 32 33
Physician Guidelines and Databases 193
Coffee Break: Tutorials for Biologists35 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.36 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.37 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.
Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·
CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.
·
Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.
·
Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.
·
MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical
35 Adapted
from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 37 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.
36
194 Spinal Cord Injury
literature, and to explore relevant Web http://www.med.virginia.edu/~wmd4n/medweaver.html. ·
sites;
see
Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see http://www.lexical.com/Metaphrase.html.
The Genome Project and Spinal Cord Injury With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to spinal cord injury. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.
Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).38 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “spinal cord injury” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for spinal cord injury: Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.
38
Physician Guidelines and Databases 195
·
Alzheimer Disease Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?104300
·
Amyotrophic Lateral Sclerosis 1 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?105400
·
Atp/gtp-binding Protein 1; Agtpbp1 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?606830
·
Chediak-higashi Syndrome Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?214500
·
Ciliary Neurotrophic Factor Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?118945
·
Clusterin Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?185430
·
Erythropoietin Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?133170
·
Glial Cell Line-derived Neurotrophic Factor Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?600837
·
Interleukin 3 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?147740
·
Neurofibromatosis, Type I Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?162200 Genes and Disease (NCBI - Map)
The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this
196 Spinal Cord Injury
site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·
Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html
·
Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html
·
Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html
Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·
PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
·
Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide
·
Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein
·
Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure
·
Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome
Physician Guidelines and Databases 197
·
PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset
·
OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
·
Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy
·
Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books
·
ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/
To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “spinal cord injury” (or synonyms) and click “Go.”
Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database39 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At the following Web site you can also search across syndromes using an index: http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html. You can search by keywords at this Web site: http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html.
Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html.
39
198 Spinal Cord Injury
The Genome Database40 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “spinal cord injury” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to nonprofessionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.
Specialized References The following books are specialized references written for professionals interested in spinal cord injury (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · The Behavioral Neurology of White Matter by Christopher M. Filley; Paperback - 279 pages; 1st edition (September 15, 2001), Oxford University Press; ISBN: 019513561X; http://www.amazon.com/exec/obidos/ASIN/019513561X/icongroupinterna
· The Cerebellum and Its Disorders by Mario-Ubaldo Manto, Massimo Pandolfo; Hardcover - 1st edition (January 2002), Cambridge University Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission.
40
Physician Guidelines and Databases 199
Press; ISBN: 0521771560; http://www.amazon.com/exec/obidos/ASIN/0521771560/icongroupinterna · Clinical Neurology by David A. Greenberg, et al; Paperback - 390 pages; 5th edition (February 9, 2002), Appleton & Lange; ISBN: 0071375430; http://www.amazon.com/exec/obidos/ASIN/0071375430/icongroupinterna · Clinical Neurology for Psychiatrists by David M. Kaufman; Hardcover 670 pages, 5th edition (January 15, 2001), W. B. Saunders Co.; ISBN: 0721689957; http://www.amazon.com/exec/obidos/ASIN/0721689957/icongroupinterna · Comprehensive Neurology by Roger N. Rosenberg (Editor), David E. Pleasure (Editor); 1280 pages, 2nd edition (April 1998), Wiley-Liss; ISBN: 0471169587; http://www.amazon.com/exec/obidos/ASIN/0471169587/icongroupinterna · Emergent and Urgent Neurology by William J. Weiner (Editor), Lisa M. Shulman (Editor); Hardcover - 571 pages; 2nd edition (January 15, 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0397518579; http://www.amazon.com/exec/obidos/ASIN/0397518579/icongroupinterna · Neurology in Clinical Practice: Volume I: Principles of Diagnosis and Management, Volume II: The Neurological Disorders (2-Volume Set, Includes a 12-Month Subscription to the Online Edition) by W. G. Bradley, et al; Hardcover - 2413 pages, 3rd edition, Vol 1-2 (January 15, 2000), Butterworth-Heinemann; ISBN: 0750699736; http://www.amazon.com/exec/obidos/ASIN/0750699736/icongroupinterna · Neuroscience: Exploring the Brain by Mark F. Bear, et al; Hardcover - 855 pages, 2nd edition (January 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0683305964; http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupinterna · Office Practice of Neurology by Martain A. Samuels, Steven F. Feske; Hardcover, Churchill Livingstone; ISBN: 0443065578; http://www.amazon.com/exec/obidos/ASIN/0443065578/icongroupinterna · Patient-Based Approaches to Cognitive Neuroscience by Martha J. Farah (Editor), Todd E. Feinberg (Editor); Paperback - 425 pages (April 3, 2000), MIT Press; ISBN: 0262561239; http://www.amazon.com/exec/obidos/ASIN/0262561239/icongroupinterna · Principles of Neural Science by Eric R. Kandel (Editor), et al; Hardcover 1414 pages, 4th edition (January 5, 2000), McGraw-Hill Professional Publishing; ISBN: 0838577016; http://www.amazon.com/exec/obidos/ASIN/0838577016/icongroupinterna
200 Spinal Cord Injury
· Review Manual for Neurology in Clinical Practice by Karl E. Misulis, et al; Paperback, Butterworth-Heinemann Medical; ISBN: 0750671920; http://www.amazon.com/exec/obidos/ASIN/0750671920/icongroupinterna
Vocabulary Builder Bacteriuria: The presence of bacteria in the urine with or without consequent urinary tract infection. Since bacteriuria is a clinical entity, the term does not preclude the use of urine/microbiology for technical discussions on the isolation and segregation of bacteria in the urine. [NIH] Budgets: Detailed financial plans for carrying out specific activities for a certain period of time. They include proposed income and expenditures. [NIH] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Erythropoietin: Glycoprotein hormone, secreted chiefly by the kidney in the adult and the liver in the fetus, that acts on erythroid stem cells of the bone marrow to stimulate proliferation and differentiation. [NIH] Febrile: Pertaining to or characterized by fever. [EU]
Dissertations 201
CHAPTER 10. DISSERTATIONS ON SPINAL CORD INJURY Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to spinal cord injury. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.
Dissertations on Spinal Cord Injury ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to spinal cord injury. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with spinal cord injury: ·
A Comparison of Individual and Group Therapy on Self-concept and Depression of Patients with Spinal Cord Injury. by Riggin, Ona Ziehli, Edd from Memphis State University, 1976, 149 pages http://wwwlib.umi.com/dissertations/fullcit/7629243
202 Spinal Cord Injury
·
Activity-dependent Neuroplasticity Following Contusion Spinal Cord Injury in the Adult Rat by Flynn, Sheryl Maureen; Phd from University of Florida, 2001, 145 pages http://wwwlib.umi.com/dissertations/fullcit/3039762
·
Acute Downregulation of Antibody Production against Antigens Draining from the Spinal Subarachnoid Space Following Spinal Cord Injury: Mediation by Systemic Catecholamines by Vega, Jose Luis; Phd from Rutgers the State University of New Jersey - Newark, 2002, 127 pages http://wwwlib.umi.com/dissertations/fullcit/3043646
·
An Empirical Exploration of Predictions Arising from a Cognitivebehavioral Model of Depression among Persons with Spinal Cord Injury by Tirch, Dennis D.; Phd from Fairleigh Dickinson University, 2002, 132 pages http://wwwlib.umi.com/dissertations/fullcit/3032986
·
An Ethnographic Study of Leisure Participation among People with Spinal Cord Injury by Goldstein, Marlene, Phd from New York University, 1996, 234 pages http://wwwlib.umi.com/dissertations/fullcit/9710918
·
An Evaluation of Calcium Channel Blockade and Direct Current Stimulation for Promoting Recovery after Acute Experimental Spinal Cord Injury by Fehlings, Michael George; Phd from University of Toronto (canada), 1989 http://wwwlib.umi.com/dissertations/fullcit/NL51004
·
An Evaluation of Meditation As a Stress Reduction Technique for Persons with Spinal Cord Injury (rehabilitation, Counseling, Therapy Strategies) by Anthony, Walter, Jr., Phd from The University of Michigan, 1985, 174 pages http://wwwlib.umi.com/dissertations/fullcit/8600399
·
An Investigation of Some Environmental Factors Associated with Disability for People with Spinal Cord Injury by Northup, Nancy Elizabeth, Phd from Syracuse University, 1982, 162 pages http://wwwlib.umi.com/dissertations/fullcit/8229040
·
Auditory-verbal Memory Abilities Following Traumatic Spinal Cord Injury: a Comparison Study by Hoffman, Loren Lamont, Phd from Georgia State University, 1988, 124 pages http://wwwlib.umi.com/dissertations/fullcit/8902754
Dissertations 203
·
Automatic Postural Responses in Individuals with Incomplete Spinal Cord Injury by Thigpen, Mary Torrance; Phd from University of Florida, 2001, 154 pages http://wwwlib.umi.com/dissertations/fullcit/3039821
Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to spinal cord injury is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.
Vocabulary Builder Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Catecholamines: A general class of ortho-dihydroxyphenylalkylamines derived from tyrosine. [NIH] Postural: Pertaining to posture or position. [EU]
205
PART III. APPENDICES
ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with spinal cord injury and related conditions.
Researching Your Medications 207
APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with spinal cord injury. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internetbased databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for spinal cord injury. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of spinal cord injury. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.
208 Spinal Cord Injury
Your Medications: The Basics41 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of spinal cord injury. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with spinal cord injury take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·
Ask about all parts of your treatment, including diet changes, exercise, and medicines.
·
Ask about the risks and benefits of each medicine or other treatment you might receive.
·
Ask how often you or your doctor will check for side effects from a given medication.
Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for spinal cord injury. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·
The name of the medicine and what it is supposed to do.
·
How and when to take the medicine, how much to take, and for how long.
·
What food, drinks, other medicines, or activities you should avoid while taking the medicine.
·
What side effects the medicine may have, and what to do if they occur.
41
This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.
Researching Your Medications 209
·
If you can get a refill, and how often.
·
About any terms or directions you do not understand.
·
What to do if you miss a dose.
·
If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).
Do not forget to tell your doctor about all the medicines you are currently taking (not just those for spinal cord injury). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·
Name of medicine
·
Reason taken
·
Dosage
·
Time(s) of day
Also include any over-the-counter medicines, such as: ·
Laxatives
·
Diet pills
·
Vitamins
·
Cold medicine
·
Aspirin or other pain, headache, or fever medicine
·
Cough medicine
·
Allergy relief medicine
·
Antacids
·
Sleeping pills
·
Others (include names)
210 Spinal Cord Injury
Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for spinal cord injury. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.42 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of spinal cord injury. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to spinal cord injury:
Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.
42
Researching Your Medications 211
Botulinum Toxin Type A ·
Parenteral-Local - U.S. Brands: Botox http://www.nlm.nih.gov/medlineplus/druginfo/botulinumtoxint ypeaparenterall202608.html
Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office. Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters’ database as associated with spinal cord injury (including those with contraindications):43
Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.
Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.
43
Adapted from A to Z Drug Facts by Facts and Comparisons.
212 Spinal Cord Injury
Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.
Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with spinal cord injury--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat spinal cord injury or potentially create deleterious side effects in patients with spinal cord injury. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take.
Researching Your Medications 213
The package insert provides more information about potential drug interactions.
A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with spinal cord injury. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with spinal cord injury. The FDA warns patients to watch out for44: ·
Secret formulas (real scientists share what they know)
·
Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)
·
Quick, painless, or guaranteed cures
·
If it sounds too good to be true, it probably isn’t true.
If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.
General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Current Therapy in Neurologic Disease by Richard T. Johnson, et al; Hardcover - 457 pages, 6th edition (January 15, 2002), Mosby-Year Book; ISBN: 0323014720; http://www.amazon.com/exec/obidos/ASIN/0323014720/icongroupinterna
44
This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.
214 Spinal Cord Injury
· Emerging Pharmacological Tools in Clinical Neurology by MedPanel Inc. (Author); Digital - 66 pages, MarketResearch.com; ISBN: B00005RBN8; http://www.amazon.com/exec/obidos/ASIN/B00005RBN8/icongroupinter na · Goodman & Gilman’s The Pharmacological Basis of Therapeutics by Joel G. Hardman (Editor), Lee E. Limbird; Hardcover - 1825 pages, 10th edition (August 13, 2001), McGraw-Hill Professional Publishing; ISBN: 0071354697; http://www.amazon.com/exec/obidos/ASIN/0071354697/icongroupinterna · Neurology and General Medicine by Michael J. Aminoff (Editor), Hardcover - 992 pages, 3rd edition (March 15, 2001), Churchill Livingstone; ISBN: 0443065713; http://www.amazon.com/exec/obidos/ASIN/0443065713/icongroupinterna · Neurology and Medicine by Hughes Perkins; Hardcover - 415 pages, 1st edition (December 15, 1999), B. M. J. Books; ISBN: 0727912240; http://www.amazon.com/exec/obidos/ASIN/0727912240/icongroupinterna · Pharmacological Management of Neurological and Psychiatric Disorders by S. J. Enna (Editor), et al; Hardcover - 736 pages, 1st edition, McGrawHill Professional Publishing; ISBN: 0070217645; http://www.amazon.com/exec/obidos/ASIN/0070217645/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Botulinum Toxin Type A: A neurotoxin produced by Clostridium botulinum. When consumed in contaminated food it can cause paralysis and death. In its purified form, it has been used in the treatment of blepharospasm and strabismus. [NIH] Parenteral: Not through the alimentary canal but rather by injection through some other route, as subcutaneous, intramuscular, intraorbital, intracapsular, intraspinal, intrasternal, intravenous, etc. [EU]
Researching Alternative Medicine 215
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to spinal cord injury. Finally, at the conclusion of this chapter, we will provide a list of readings on spinal cord injury from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.
What Is CAM?45 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 45
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.
216 Spinal Cord Injury
treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.
What Are the Domains of Alternative Medicine?46 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are
46
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.
Researching Alternative Medicine 217
practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.
218 Spinal Cord Injury
Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.
Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.
Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.
Researching Alternative Medicine 219
Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.
Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.47
47
Adapted from http://www.4woman.gov/faq/alternative.htm.
220 Spinal Cord Injury
Is It Okay to Want Both Traditional and Alternative or Complementary Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.
Finding CAM References on Spinal Cord Injury Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for spinal cord injury. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.
National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to spinal cord injury and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “spinal cord injury” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to spinal cord injury: ·
A cervical spinal cord injury following chiropractic manipulation. Author(s): Rinsky LA, Reynolds GG, Jameson RM, Hamilton RD.
Researching Alternative Medicine 221
Source: Paraplegia. 1976 February; 13(4): 223-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1264476&dopt=Abstract ·
A comparison of FES with KAFO for providing ambulation and upright mobility in a child with a complete thoracic spinal cord injury. Author(s): Bonaroti D, Akers J, Smith BT, Mulcahey MJ, Betz RR. Source: J Spinal Cord Med. 1999 Fall; 22(3): 159-66. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10685380&dopt=Abstract
·
A new technique for sacral nerve stimulation: a percutaneous method for urinary incontinence caused by spinal cord injury. Author(s): Ishigooka M, Suzuki Y, Hashimoto T, Sasagawa I, Nakada T, Handa Y. Source: British Journal of Urology. 1998 February; 81(2): 315-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9488079&dopt=Abstract
·
A possible new reflex pathway for micturition after spinal cord injury. Author(s): Xiao CG, Godec CJ. Source: Paraplegia. 1994 May; 32(5): 300-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8058346&dopt=Abstract
·
Acupuncture and Trager psychophysical integration in the treatment of wheelchair user's shoulder pain in individuals with spinal cord injury. Author(s): Dyson-Hudson TA, Shiflett SC, Kirshblum SC, Bowen JE, Druin EL. Source: Archives of Physical Medicine and Rehabilitation. 2001 August; 82(8): 1038-46. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11494182&dopt=Abstract
·
Agmatine reverses pain induced by inflammation, neuropathy, and spinal cord injury. Author(s): Fairbanks CA, Schreiber KL, Brewer KL, Yu CG, Stone LS, Kitto KF, Nguyen HO, Grocholski BM, Shoeman DW, Kehl LJ, Regunathan S, Reis DJ, Yezierski RP, Wilcox GL.
222 Spinal Cord Injury
Source: Proceedings of the National Academy of Sciences of the United States of America. 2000 September 12; 97(19): 10584-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10984543&dopt=Abstract ·
Alcohol and marijuana use in a community-based sample of persons with spinal cord injury. Author(s): Young ME, Rintala DH, Rossi CD, Hart KA, Fuhrer MJ. Source: Archives of Physical Medicine and Rehabilitation. 1995 June; 76(6): 525-32. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7763151&dopt=Abstract
·
Animal assisted therapy and the individual with spinal cord injury. Author(s): Counsell CM, Abram J, Gilbert M. Source: Sci Nurs. 1997 June; 14(2): 52-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9295752&dopt=Abstract
·
Antiseptic efficacy of disinfecting solutions in suspension test in vitro against methicillin-resistant Staphylococcus aureus, Pseudomonas aeruginosa and Escherichia coli in pressure sore wounds after spinal cord injury. Author(s): Michel D, Zach GA. Source: Dermatology (Basel, Switzerland). 1997; 195 Suppl 2: 36-41. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9403253&dopt=Abstract
·
Assessment of the effect of increased dietary fibre intake on bowel function in patients with spinal cord injury. Author(s): Cameron KJ, Nyulasi IB, Collier GR, Brown DJ. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 1996 May; 34(5): 277-83. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8963975&dopt=Abstract
·
Auditory processing in spinal cord injury: a preliminary investigation from a sensory deprivation perspective. Author(s): Richards JS, Seitz MR, Eisele WA.
Researching Alternative Medicine 223
Source: Archives of Physical Medicine and Rehabilitation. 1986 February; 67(2): 115-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3954560&dopt=Abstract ·
Autoimmune T cells as potential neuroprotective therapy for spinal cord injury. Author(s): Hauben E, Nevo U, Yoles E, Moalem G, Agranov E, Mor F, Akselrod S, Neeman M, Cohen IR, Schwartz M. Source: Lancet. 2000 January 22; 355(9200): 286-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10675079&dopt=Abstract
·
Auto-immunity to spermatozoa and quality of semen in men with spinal cord injury. Author(s): Siosteen A, Steen Y, Forssman L, Sullivan L. Source: Int J Fertil. 1993 March-April; 38(2): 117-22. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8097501&dopt=Abstract
·
Beneficial effects of acupuncture treatment following experimental spinal cord injury: a behavioral, morphological, and biochemical study. Author(s): Politis MJ, Korchinski MA. Source: Acupunct Electrother Res. 1990; 15(1): 37-49. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1973579&dopt=Abstract
·
Biofeedback effect on electromyography responses in patients with spinal cord injury. Author(s): Brucker BS, Bulaeva NV. Source: Archives of Physical Medicine and Rehabilitation. 1996 February; 77(2): 133-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8607736&dopt=Abstract
·
Biological interventions for spinal cord injury. Author(s): Gimenez y Ribotta M, Privat A. Source: Current Opinion in Neurology. 1998 December; 11(6): 647-54. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9870132&dopt=Abstract
224 Spinal Cord Injury
·
Cervical spinal cord injury caused by acupuncture. Author(s): Kida Y, Naritomi H, Sawada T, Kuriyama Y, Ogawa M, Miyamoto S. Source: Archives of Neurology. 1988 August; 45(8): 831. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3395253&dopt=Abstract
·
Chronic gastrointestinal problems and bowel dysfunction in patients with spinal cord injury. Author(s): Han TR, Kim JH, Kwon BS. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 1998 July; 36(7): 485-90. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9670385&dopt=Abstract
·
Comparison of seat pressures on three bowel care/shower chairs in spinal cord injury. Author(s): Nelson AL, Malassigne P, Murray J. Source: Sci Nurs. 1994 December; 11(4): 105-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7777842&dopt=Abstract
·
Effect of acupuncture on free radicals in rats with early experimental spinal cord injury. Author(s): Wu Y, Sun Z, Li Z, Zhao Y, Sun S. Source: J Tradit Chin Med. 2002 March; 22(1): 51-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11977524&dopt=Abstract
·
Efficacy of high voltage pulsed current for healing of pressure ulcers in patients with spinal cord injury. Author(s): Griffin JW, Tooms RE, Mendius RA, Clifft JK, Vander Zwaag R, el-Zeky F. Source: Physical Therapy. 1991 June; 71(6): 433-42; Discussion 442-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2034707&dopt=Abstract
·
Electrical pelvic floor stimulation: a possible alternative treatment for reflex urinary incontinence in patients with spinal cord injury. Author(s): Ishigooka M, Hashimoto T, Hayami S, Suzuki Y, Nakada T, Handa Y.
Researching Alternative Medicine 225
Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 1996 July; 34(7): 411-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8963996&dopt=Abstract ·
Electrical stimulation in spinal cord injury. Author(s): Sadowsky CL. Source: Neurorehabilitation. 2001; 16(3): 165-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11790901&dopt=Abstract
·
Electrical stimulation in treating spasticity resulting from spinal cord injury. Author(s): Bajd T, Gregoric M, Vodovnik L, Benko H. Source: Archives of Physical Medicine and Rehabilitation. 1985 August; 66(8): 515-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3875331&dopt=Abstract
·
Electroejaculation in patients with spinal cord injury: first report of a large-scale experience from Japan. Author(s): Momose H, Hirao Y, Yamamoto M, Yamada K, Okajima E. Source: International Journal of Urology : Official Journal of the Japanese Urological Association. 1995 November; 2(5): 326-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8749952&dopt=Abstract
·
Electroejaculation in spinal cord injury patients: simplified new equipment and technique. Author(s): Perkash I, Martin DE, Warner H, Speck V. Source: The Journal of Urology. 1990 February; 143(2): 305-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2299721&dopt=Abstract
·
Evaluation of central spinal cord injury pain with diagnostic spinal anesthesia. Author(s): Loubser PG, Clearman RR. Source: Anesthesiology. 1993 August; 79(2): 376-8. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8342845&dopt=Abstract
226 Spinal Cord Injury
·
Experience in vibratory and electro-ejaculation techniques in spinal cord injury patients: a preliminary report. Author(s): Sarkarati M, Rossier AB, Fam BA. Source: The Journal of Urology. 1987 July; 138(1): 59-62. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3496469&dopt=Abstract
·
Gait after spinal cord injury and the central pattern generator for locomotion. Author(s): Pinter MM, Dimitrijevic MR. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 1999 August; 37(8): 531-7. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10455527&dopt=Abstract
·
Guidelines for routine respiratory care of patients with spinal cord injury. A clinical report. Author(s): Clough P, Lindenauer D, Hayes M, Zekany B. Source: Physical Therapy. 1986 September; 66(9): 1395-402. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3749272&dopt=Abstract
·
Human spinal cord injury: new and emerging approaches to treatment. Author(s): Johnston L. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 2001 November; 39(11): 609-13. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11641813&dopt=Abstract
·
Importance of access to research information among individuals with spinal cord injury: results of an evidenced-based questionnaire. Author(s): Edwards L, Krassioukov A, Fehlings MG. Source: Spinal Cord : the Official Journal of the International Medical Society of Paraplegia. 2002 October; 40(10): 529-35. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12235536&dopt=Abstract
·
Influence of urinary management on urologic complications in a cohort of spinal cord injury patients. Author(s): Gallien P, Nicolas B, Robineau S, Le Bot MP, Durufle A, Brissot R.
Researching Alternative Medicine 227
Source: Archives of Physical Medicine and Rehabilitation. 1998 October; 79(10): 1206-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9779672&dopt=Abstract ·
Is acupuncture effective in treating chronic pain after spinal cord injury? Author(s): Nayak S, Shiflett SC, Schoenberger NE, Agostinelli S, Kirshblum S, Averill A, Cotter AC. Source: Archives of Physical Medicine and Rehabilitation. 2001 November; 82(11): 1578-86. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11689979&dopt=Abstract
·
Lipid peroxidation in experimental spinal cord injury. Comparison of treatment with Ginkgo biloba, TRH and methylprednisolone. Author(s): Koc RK, Akdemir H, Kurtsoy A, Pasaoglu H, Kavuncu I, Pasaoglu A, Karakucuk I. Source: Research in Experimental Medicine. Zeitschrift Fur Die Gesamte Experimentelle Medizin Einschliesslich Experimenteller Chirurgie. 1995; 195(2): 117-23. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7659833&dopt=Abstract
·
Lower extremity functional neuromuscular stimulation in cases of spinal cord injury. Author(s): Cybulski GR, Penn RD, Jaeger RJ. Source: Neurosurgery. 1984 July; 15(1): 132-46. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6382044&dopt=Abstract
·
Maggot therapy for treating pressure ulcers in spinal cord injury patients. Author(s): Sherman RA, Wyle F, Vulpe M. Source: J Spinal Cord Med. 1995 April; 18(2): 71-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7640976&dopt=Abstract
·
Morphometric assessment of drug effects in experimental spinal cord injury. Author(s): Iizuka H, Iwasaki Y, Yamamoto T, Kadoya S.
228 Spinal Cord Injury
Source: Journal of Neurosurgery. 1986 July; 65(1): 92-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3519891&dopt=Abstract ·
Motor units in incomplete spinal cord injury: electrical activity, contractile properties and the effects of biofeedback. Author(s): Stein RB, Brucker BS, Ayyar DR. Source: Journal of Neurology, Neurosurgery, and Psychiatry. 1990 October; 53(10): 880-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2266370&dopt=Abstract
·
Oral creatine supplementation enhances upper extremity work capacity in persons with cervical-level spinal cord injury. Author(s): Jacobs PL, Mahoney ET, Cohn KA, Sheradsky LF, Green BA. Source: Archives of Physical Medicine and Rehabilitation. 2002 January; 83(1): 19-23. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11782827&dopt=Abstract
·
Psychiatric diagnosis and treatment following spinal cord injury. Author(s): Stewart TD. Source: Psychosomatics. 1988 Spring; 29(2): 214-20. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3368565&dopt=Abstract
·
Pulmonary function testing in spinal cord injury: effects of abdominal muscle stimulation. Author(s): Langbein WE, Maloney C, Kandare F, Stanic U, Nemchausky B, Jaeger RJ. Source: Journal of Rehabilitation Research and Development. 2001 September-October; 38(5): 591-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11732836&dopt=Abstract
·
Quality of semen after repeated ejaculation treatment in spinal cord injury men. Author(s): Siosteen A, Forssman L, Steen Y, Sullivan L, Wickstrom I.
Researching Alternative Medicine 229
Source: Paraplegia. 1990 February; 28(2): 96-104. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2235028&dopt=Abstract ·
Rehabilitation after spinal cord injury. Author(s): Bingley J. Source: Nursing Standard : Official Newspaper of the Royal College of Nursing. 1990 June 13-19; 4(38): 27-30. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2116824&dopt=Abstract
·
Rehospitalization and spinal cord injury: cross-sectional survey of adults living independently. Author(s): Meyers AR, Feltin M, Master RJ, Nicastro D, Cupples A, Lederman RI, Branch LG. Source: Archives of Physical Medicine and Rehabilitation. 1985 October; 66(10): 704-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2932086&dopt=Abstract
·
Resistive inspiratory muscle training in subjects with chronic cervical spinal cord injury. Author(s): Rutchik A, Weissman AR, Almenoff PL, Spungen AM, Bauman WA, Grimm DR. Source: Archives of Physical Medicine and Rehabilitation. 1998 March; 79(3): 293-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9523781&dopt=Abstract
·
Risk factors for renal stone formation in patients with spinal cord injury. Author(s): Kohli A, Lamid S. Source: British Journal of Urology. 1986 December; 58(6): 588-91. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3801812&dopt=Abstract
·
Role of C-afferent fibres in the mechanism of action of sacral nerve root neuromodulation in chronic spinal cord injury. Author(s): Shaker H, Wang Y, Loung D, Balbaa L, Fehlings MG, Hassouna MM.
230 Spinal Cord Injury
Source: Bju International. 2000 May; 85(7): 905-10. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10792175&dopt=Abstract ·
Seminal somatostatin in men with spinal cord injury. Author(s): Odum L, Sonksen J, Biering-Sorensen F. Source: Paraplegia. 1995 July; 33(7): 374-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7478725&dopt=Abstract
·
Sensorimotor cortical activity in patients with complete spinal cord injury: a functional magnetic resonance imaging study. Author(s): Sabbah P, de SS, Leveque C, Gay S, Pfefer F, Nioche C, Sarrazin JL, Barouti H, Tadie M, Cordoliani YS. Source: Journal of Neurotrauma. 2002 January; 19(1): 53-60. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11852978&dopt=Abstract
Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·
Alternative Medicine Foundation, Inc.: http://www.herbmed.org/
·
AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats
·
Chinese Medicine: http://www.newcenturynutrition.com/
·
drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html
·
Family Village: http://www.familyvillage.wisc.edu/med_altn.htm
·
Google: http://directory.google.com/Top/Health/Alternative/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Alternative/
·
TPN.com: http://www.tnp.com/
·
Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/
·
WebMDÒHealth: http://my.webmd.com/drugs_and_herbs
·
WellNet: http://www.wellnet.ca/herbsa-c.htm
Researching Alternative Medicine 231
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to Spinal Cord Injury; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·
General Overview Incontinence, Urinary Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Uri naryIncontinencecc.html Urinary Incontinence Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Uri naryIncontinencecc.html Urinary Tract Infection Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/UTI.htm
·
Herbs and Supplements Baclofen Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Baclofen.htm Pregnenolone Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Pregnenolone.htm
232 Spinal Cord Injury
General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative and Complementary Treatment in Neurologic Illness by Michael I. Weintraub (Editor); Paperback - 288 pages (March 23, 2001), Churchill Livingstone; ISBN: 0443065586; http://www.amazon.com/exec/obidos/ASIN/0443065586/icongroupinterna · Radical Healing: Integrating the World’s Great Therapeutic Traditions to Create a New Transformative Medicine by Rudolph Ballentine, M.D., Linda Funk (Illustrator); Paperback - 612 pages; Reprint edition (March 14, 2000), Three Rivers Press; ISBN: 0609804847; http://www.amazon.com/exec/obidos/ASIN/0609804847/icongroupinterna · The Review of Natural Products by Facts and Comparisons (Editor); CdRom edition (January 2002), Facts & Comparisons; ISBN: 1574391453; http://www.amazon.com/exec/obidos/ASIN/1574391453/icongroupinterna For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218
Researching Nutrition 233
APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with spinal cord injury. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with spinal cord injury may be given different recommendations. Some recommendations may be directly related to spinal cord injury, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of spinal cord injury. We will then show you how to find studies dedicated specifically to nutrition and spinal cord injury.
234 Spinal Cord Injury
Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·
Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.
·
Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.
·
Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.
·
Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.
Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·
Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.
·
Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.
·
Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from
Researching Nutrition 235
nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·
Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains
·
Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.
·
Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.
·
Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.
·
Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.
·
Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.
·
Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.
·
Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.
It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·
Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.
·
Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.
236 Spinal Cord Injury
·
Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.
·
Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.
·
Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.
·
Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.
·
Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.
·
Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.
·
Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.
The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:48 ·
DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.
·
DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.
48
Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.
Researching Nutrition 237
·
RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”
·
RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?49
Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”50 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.51 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 50 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail:
[email protected]. 51 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 49
238 Spinal Cord Injury
the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail:
[email protected]
Finding Studies on Spinal Cord Injury The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.52 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.
52
Researching Nutrition 239
periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “spinal cord injury” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “spinal cord injury” (or a synonym): ·
A comparison of bowel care patterns in patients with spinal cord injury: upper motor neuron bowel vs lower motor neuron bowel. Author(s): Department of Physical Medicine and Rehabilitation, Ajou University School of Medicine, Suwon, Korea. Source: Yim, S Y Yoon, S H Lee, I Y Rah, E W Moon, H W Spinal-Cord. 2001 April; 39(4): 204-7 1362-4393
·
An intraaortic solution trial to prevent spinal cord injury in a rabbit model. Author(s): Department of Cardiovascular Surgery, Ataturk Medical Research Hospital, Izmir, Turkey. Source: Tetik O Islamoglu, F Yagdi, T Atay, Y Calkavur, T Ozbek, C Canpolat, L Buket, S Vuksel, M Eur-J-Vasc-Endovasc-Surg. 2001 August; 22(2): 175-9 1078-5884
·
Back pain and epidural spinal cord compression. Source: Posner, J B Med-Clin-North-Am. 1987 March; 71(2): 185-205 00257125
·
Beneficial effects of nitric oxide synthase inhibition on the recovery of neurological function after spinal cord injury in rats. Author(s): Department of Pharmacology, Chiba University School of Medicine, Japan.
[email protected] Source: Suzuki, T Tatsuoka, H Chiba, T Sekikawa, T Nemoto, T Moriya, H Sakuraba, S Nakaya, H Naunyn-Schmiedebergs-Arch-Pharmacol. 2001 January; 363(1): 94-100 0028-1298
·
Biochemistry and pharmacology of lipid antioxidants in acute brain and spinal cord injury. Author(s): Central Nervous System Diseases Research, Upjohn Company, Kalamazoo, Michigan. Source: Hall, E D Yonkers, P A Andrus, P K Cox, J W Anderson, D K JNeurotrauma. 1992 May; 9 Suppl 2S425-42 0897-7151
240 Spinal Cord Injury
·
Changes in exploratory behavior as a measure of chronic central pain following spinal cord injury. Author(s): Department of Anatomy and Neurosciences, University of Texas Medical Branch at Galveston, 77555-1043, USA. Source: Mills, C D Grady, J J Hulsebosch, C E J-Neurotrauma. 2001 October; 18(10): 1091-105 0897-7151
·
Comparison of soluble dexamethasone sodium phosphate with free dexamethasone and indomethacin in treatment of experimental neoplastic spinal cord compression. Author(s): Department of Neurology, Hadassah Hebrew University Hospital, Jerusalem, Israel. Source: Siegal, T Siegal, T Shohami, E Shapira, Y Spine. 1988 October; 13(10): 1171-6 0362-2436
·
Comparison of the effects of melatonin and methylprednisolone in experimental spinal cord injury. Author(s): Department of Neurosurgery, Ankara Numune Hospital, Turkey. Source: Kaptanoglu, E Tuncel, M Palaoglu, S Konan, A Demirpence, E Kilinc, K J-Neurosurg. 2000 July; 93(1 Suppl): 77-84 0022-3085
·
Dose-dependent effects of naloxone and methylprednisolone in the ventral compression model of spinal cord injury. Author(s): Division of Neurosurgery, University of New Mexico School of Medicine, Albuquerque 87131. Source: Benzel, E C Hoffpauir, G M Thomas, M M Beal, J A Lancon, J A Kesterson, L J-Spinal-Disord. 1990 December; 3(4): 339-44 0895-0385
·
Effect of aluminum on neurological recovery in rats following spinal cord injury. Author(s): Neuroscience Research Group, Armed Forces Hospital, Riyadh, Saudi Arabia. Source: Al Moutaery, K Al Deeb, S Biary, N Morais, C Ahmad Khan, H Tariq, M J-Neurosurg. 2000 October; 93(2 Suppl): 276-82 0022-3085
·
Effect of dosage and timing of administration of naloxone on outcome in the rat ventral compression model of spinal cord injury. Author(s): Division of Neurosurgery, University of New Mexico Medical Center, Albuquerque. Source: Benzel, E C Lancon, J A Bairnsfather, S Kesterson, L Neurosurgery. 1990 October; 27(4): 597-601 0148-396X
·
Effect of strenuous arm exercise on oxidized-LDL-potentiated platelet activation in individuals with spinal cord injury. Author(s): Department of Physical Therapy, Chang Gung University, Taoyun, Tawan.
[email protected]
Researching Nutrition 241
Source: Wang, J S Yang, C F Wong, M K Chow, S E Chen, J K ThrombHaemost. 2000 July; 84(1): 118-23 0340-6245 ·
Effects of beraprost sodium on canine cauda equina function and blood flow using a chronic spinal cord compression model. Author(s): Department of Orthopaedic Surgery, Fukushima Medical College, Fukushima City, Fukushima, Japan. Source: Konno, S Arai, I Otani, K Olmarker, K Kikuchi, S J-Spinal-Disord. 2001 August; 14(4): 336-8 0895-0385
·
Effects of spinal cord injury on neurofilament immunoreactivity and capsaicin sensitivity in rat dorsal root ganglion neurons innervating the urinary bladder. Author(s): Department of Pharmacology, School of Medicine, University of Pittsburgh, PA 15261, USA. Source: Yoshimura, N Erdman, S L Snider, M W de Groat, W C Neuroscience. 1998 March; 83(2): 633-43 0306-4522
·
Epidural spinal cord compression as an initial symptom in childhood acute lymphoblastic leukemia: rapid decompression by local irradiation and systemic chemotherapy. Author(s): Department of Pediatrics, Tenri Hospital, Japan. Source: Kataoka, A Shimizu, K Matsumoto, T Shintaku, N Okuno, T Takahashi, Y Akaishi, K Pediatr-Hematol-Oncol. 1995 Mar-April; 12(2): 179-84 0888-0018
·
Functional role and therapeutic implications of neuronal caspase-1 and -3 in a mouse model of traumatic spinal cord injury. Author(s): Neuroapoptosis Laboratory and Neurosurgical Service, Department of Surgery, Brigham and Women's Hospital, Harvard Medical School, Boston, MA 02115, USA. Source: Li, M Ona, V O Chen, M Kaul, M Tenneti, L Zhang, X Stieg, P E Lipton, S A Friedlander, R M Neuroscience. 2000; 99(2): 333-42 0306-4522
·
Glucocorticoid treatment for brain metastases and epidural spinal cord compression: a review. Author(s): Department of Medicine, Medical College of Wisconsin, Milwaukee 53226. Source: Weissman, D E J-Clin-Oncol. 1988 March; 6(3): 543-51 0732-183X
·
Hormonal treatment of symptomatic spinal cord compression in advanced prostatic cancer. Author(s): Department of Urology, Saiseikai Fukushima General Hospital, Japan. Source: Sasagawa, I Gotoh, H Miyabayashi, H Yamaguchi, O Shiraiwa, Y Int-Urol-Nephrol. 1991; 23(4): 351-6 0301-1623
242 Spinal Cord Injury
·
Hyponatremia in spinal cord injury. Author(s): Department of Medicine, Medical College of VA, Richmond 23298-0160. Source: Sica, D A Midha, M Zawada, E Stacy, W Hussey, R J-AmParaplegia-Soc. 1990 October; 13(4): 78-83 0195-2307
·
Inhibition of airway hyperreactivity by oxybutynin chloride in subjects with cervical spinal cord injury. Author(s): Mount Sinai School of Medicine, Mount Sinai Medical Center, New York, NY, USA. Source: Singas, E Grimm, D R Almenoff, P L Lesser, M Spinal-Cord. 1999 April; 37(4): 279-83 1362-4393
Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·
healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0
·
The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov
·
The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov
·
The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/
·
The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/
·
Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/
·
Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/
·
Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/
Researching Nutrition 243
Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats
·
Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html
·
Google: http://directory.google.com/Top/Health/Nutrition/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Nutrition/
·
Yahoo.com: http://dir.yahoo.com/Health/Nutrition/
·
WebMDÒHealth: http://my.webmd.com/nutrition
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web site relating to Spinal Cord Injury; please note that the particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·
Food and Diet Juices Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Juices.htm
Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Aluminum: A metallic element that has the atomic number 13, atomic symbol Al, and atomic weight 26.98. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH]
244 Spinal Cord Injury
Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Hormonal: Pertaining to or of the nature of a hormone. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neurosciences: The scientific disciplines concerned with the embryology, anatomy, physiology, biochemistry, pharmacology, etc., of the nervous sytem. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]
Finding Medical Libraries 245
APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.
Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.53
53
Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.
246 Spinal Cord Injury
Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.
Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):54 ·
Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/
·
Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM
·
Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm
·
California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html
·
California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html
·
California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html
·
California: Gateway Health Library (Sutter Gould Medical Foundation)
·
California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/
54
Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.
Finding Medical Libraries 247
·
California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp
·
California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html
·
California: San José PlaneTree Health Library, http://planetreesanjose.org/
·
California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html
·
California: University of California, Davis. Health Sciences Libraries
·
California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html
·
California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/
·
Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm
·
Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/
·
Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/
·
Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml
·
Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm
·
Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html
·
Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm
·
Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp
·
Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/
248 Spinal Cord Injury
·
Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm
·
Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html
·
Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/
·
Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm
·
Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/
·
Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/
·
Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/
·
Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm
·
Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html
·
Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm
·
Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/
·
Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library
·
Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10
·
Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html
·
Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html
·
Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml
Finding Medical Libraries 249
·
Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp
·
Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/
·
Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html
·
Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm
·
Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp
·
Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/
·
Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html
·
Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/
·
Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm
·
Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/
·
Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html
·
Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm
·
Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html
·
Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41
250 Spinal Cord Injury
·
National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html
·
National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/
·
National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/
·
Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm
·
New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/
·
New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm
·
New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm
·
New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/
·
New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html
·
New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/
·
New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html
·
New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/
·
Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm
·
Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp
Finding Medical Libraries 251
·
Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/
·
Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/
·
Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml
·
Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html
·
Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html
·
Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml
·
Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp
·
Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm
·
Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/
·
South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm
·
Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/
·
Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html
·
Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/
·
Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/
Your Rights and Insurance 253
APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with spinal cord injury faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.
Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.55 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·
Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.
55Adapted
from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.
254 Spinal Cord Injury
·
Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.
·
Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.
·
Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.
Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·
Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.
·
Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services.
·
Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.
·
Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health
Your Rights and Insurance 255
plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care. ·
Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.
Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.
Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·
Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
·
Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.
·
Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
·
Discuss all current treatments a consumer may be undergoing.
·
Discuss all risks, nontreatment.
·
Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
benefits,
and
consequences
to
treatment
or
256 Spinal Cord Injury
·
Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.
·
Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.
Health plans, health providers, and healthcare facilities should: ·
Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.
·
Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options.
·
Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.
Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·
Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
·
Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information
Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable
Your Rights and Insurance 257
healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.56
Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”57 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·
Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.
·
Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.
·
Disclose relevant information and clearly communicate wants and needs.
·
Use your health insurance plan’s internal complaint and appeal processes to address your concerns.
·
Avoid knowingly spreading disease.
To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 57 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 56
258 Spinal Cord Injury
·
Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.
·
Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community.
·
Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.
·
Show respect for other patients and health workers.
·
Make a good-faith effort to meet financial obligations.
·
Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.
Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.58 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.59 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits.
More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 59 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 58
Your Rights and Insurance 259
3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time.
260 Spinal Cord Injury
7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful
Your Rights and Insurance 261
contact information on how to find more in-depth information about Medicaid.60
Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·
You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.
·
You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.
·
You or your spouse had Medicare-covered government employment.
If you are under 65, you can get Part A without having to pay premiums if: ·
You have received Social Security or Railroad Retirement Board disability benefit for 24 months.
·
You are a kidney dialysis or kidney transplant patient.
Medicare has two parts: ·
Part A (Hospital Insurance). Most people do not have to pay for Part A.
·
Part B (Medical Insurance). Most people pay monthly for Part B. Part A (Hospital Insurance)
Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare.
This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.
60
262 Spinal Cord Injury
Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The
Your Rights and Insurance 263
phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans.
Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·
Part A (Hospital Insurance),
·
Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and
·
A monthly income that is below certain limits.
For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.
NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or under-
264 Spinal Cord Injury
insured individuals secure life-saving or life-sustaining drugs.61 NORD programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.
Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:62 ·
Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html
·
Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html
·
HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html
·
Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html
·
Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html
·
Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html
·
Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html
Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 62 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 61
Your Rights and Insurance 265
·
Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html
·
Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html
Online Glossaries 267
ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·
ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html
·
MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp
·
Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/
·
Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
·
On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/
·
Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm
·
Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html
Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as drkoop.com (http://www.drkoop.com/) and Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to spinal cord injury and keep them on file.
268 Spinal Cord Injury
Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·
Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical
·
MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html
·
Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/
·
Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine
Glossary 269
SPINAL CORD INJURY GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abdominal: Pertaining to the abdomen. [EU] Accommodation: distances. [EU]
Adjustment, especially that of the eye for various
Acetylcholine: A neurotransmitter. Acetylcholine in vertebrates is the major transmitter at neuromuscular junctions, autonomic ganglia, parasympathetic effector junctions, a subset of sympathetic effector junctions, and at many sites in the central nervous system. It is generally not used as an administered drug because it is broken down very rapidly by cholinesterases, but it is useful in some ophthalmological applications. [NIH] Agrin: A protein component of the synaptic basal lamina. It has been shown to induce clustering of acetylcholine receptors on the surface of muscle fibers and other synaptic molecules in both synapse regeneration and development. [NIH] Algorithms: A procedure consisting of a sequence of algebraic formulas and/or logical steps to calculate or determine a given task. [NIH] Aluminum: A metallic element that has the atomic number 13, atomic symbol Al, and atomic weight 26.98. [NIH] Amitriptyline: Tricyclic antidepressant with anticholinergic and sedative properties. It appears to prevent the re-uptake of norepinephrine and serotonin at nerve terminals, thus potentiating the action of these neurotransmitters. Amitriptyline also appears to antaganize cholinergic and alpha-1 adrenergic responses to bioactive amines. [NIH] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures. [NIH]
Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH]
270 Spinal Cord Injury
Aneurysm: A sac formed by the dilatation of the wall of an artery, a vein, or the heart. The chief signs of arterial aneurysm are the formation of a pulsating tumour, and often a bruit (aneurysmal bruit) heard over the swelling. Sometimes there are symptoms from pressure on contiguous parts. [EU]
Anorectal: Pertaining to the anus and rectum or to the junction region between the two. [EU] Anterograde: Moving or extending forward; called also antegrade. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Aorta: The main trunk of the systemic arteries. [NIH] Arginine: An essential amino acid that is physiologically active in the Lform. [NIH] Arteries: The vessels carrying blood away from the heart. [NIH]
Glossary 271
Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Atony: Lack of normal tone or strength. [EU] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Autonomic: Self-controlling; functionally independent. [EU] Autopsy: Postmortem examination of the body. [NIH] Axons: Nerve fibers that are capable of rapidly conducting impulses away from the neuron cell body. [NIH] Axotomy: Transection or severing of an axon. This type of denervation is used often in experimental studies on neuronal physiology and neuronal death or survival, toward an understanding of nervous system disease. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bacteriuria: The presence of bacteria in the urine with or without consequent urinary tract infection. Since bacteriuria is a clinical entity, the term does not preclude the use of urine/microbiology for technical discussions on the isolation and segregation of bacteria in the urine. [NIH] Bilateral: Having two sides, or pertaining to both sides. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biosynthesis: The building up of a chemical compound in the physiologic processes of a living organism. [EU] Botulinum Toxin Type A: A neurotoxin produced by Clostridium botulinum. When consumed in contaminated food it can cause paralysis and death. In its purified form, it has been used in the treatment of blepharospasm and strabismus. [NIH] Bruxism: A disorder characterized by grinding and clenching of the teeth. [NIH]
Budgets: Detailed financial plans for carrying out specific activities for a certain period of time. They include proposed income and expenditures. [NIH] Calcitonin: A peptide hormone that lowers calcium concentration in the blood. In humans, it is released by thyroid cells and acts to decrease the formation and absorptive activity of osteoclasts. Its role in regulating plasma calcium is much greater in children and in certain diseases than in normal adults. [NIH] Calculi: An abnormal concretion occurring mostly in the urinary and biliary tracts, usually composed of mineral salts. Also called stones. [NIH]
272 Spinal Cord Injury
Calpain: Cysteine proteinase found in many tissues. Hydrolyzes a variety of endogenous proteins including neuropeptides, cytoskeletal proteins, proteins from smooth muscle, cardiac muscle, liver, platelets and erythrocytes. Two subclasses having high and low calcium sensitivity are known. Removes Z-discs and M-lines from myofibrils. Activates phosphorylase kinase and cyclic nucleotide-independent protein kinase. [NIH] Capillary: Any one of the minute vessels that connect the arterioles and venules, forming a network in nearly all parts of the body. Their walls act as semipermeable membranes for the interchange of various substances, including fluids, between the blood and tissue fluid; called also vas capillare. [EU]
Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiac: Pertaining to the heart. [EU] Cardiological: Relating to the study of the heart. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Catecholamines: A general class of ortho-dihydroxyphenylalkylamines derived from tyrosine. [NIH] Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU]
Catheterization: The employment or passage of a catheter. [EU] Cerebellar: Pertaining to the cerebellum. [EU] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cerebrovascular: Pertaining to the blood vessels of the cerebrum, or brain. [EU]
Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Chemoreceptor: A receptor adapted for excitation by chemical substances, e.g., olfactory and gustatory receptors, or a sense organ, as the carotid body or the aortic (supracardial) bodies, which is sensitive to chemical changes in
Glossary 273
the blood stream, especially reduced oxygen content, and reflexly increases both respiration and blood pressure. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Chronic: Persisting over a long period of time. [EU] Cochlear: Of or pertaining to the cochlea. [EU] Colic: Paroxysms of pain. This condition usually occurs in the abdominal region but may occur in other body regions as well. [NIH] Collapse: 1. a state of extreme prostration and depression, with failure of circulation. 2. abnormal falling in of the walls of any part of organ. [EU] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Contractility: stimulus. [EU]
Capacity for becoming short in response to a suitable
Contusion: A bruise; an injury of a part without a break in the skin. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Creatine: An amino acid that occurs in vertebrate tissues and in urine. In muscle tissue, creatine generally occurs as phosphocreatine. Creatine is excreted as creatinine in the urine. [NIH] Cues: Signals for an action; that specific portion of a perceptual field or pattern of stimuli to which a subject has learned to respond. [NIH] Cyclic: Pertaining to or occurring in a cycle or cycles; the term is applied to chemical compounds that contain a ring of atoms in the nucleus. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Cytoskeleton: The network of filaments, tubules, and interconnecting filamentous bridges which give shape, structure, and organization to the cytoplasm. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dendrites: Extensions of the nerve cell body. They are short and branched
274 Spinal Cord Injury
and receive stimuli from other neurons. [NIH] Deoxyguanosine: A nucleoside consisting of the base guanine and the sugar deoxyribose. [NIH] Deprivation: Loss or absence of parts, organs, powers, or things that are needed. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Diaphragm: The musculofibrous partition that separates the thoracic cavity from the abdominal cavity. Contraction of the diaphragm increases the volume of the thoracic cavity aiding inspiration. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Diffusion: The process of becoming diffused, or widely spread; the spontaneous movement of molecules or other particles in solution, owing to their random thermal motion, to reach a uniform concentration throughout the solvent, a process requiring no addition of energy to the system. [EU] Distal: Remote; farther from any point of reference; opposed to proximal. In dentistry, used to designate a position on the dental arch farther from the median line of the jaw. [EU] Distention: The state of being distended or enlarged; the act of distending. [EU]
Diving: An activity in which the organism plunges into water. It includes scuba and bell diving. Diving as natural behavior of animals goes here, as well as diving in decompression experiments with humans or animals. [NIH] Dorsal: 1. pertaining to the back or to any dorsum. 2. denoting a position more toward the back surface than some other object of reference; same as posterior in human anatomy; superior in the anatomy of quadrupeds. [EU] Dysphagia: Difficulty in swallowing. [EU] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Ejaculation: A sudden act of expulsion, as of the semen. [EU] Electromyography: Recording of the changes in electric potential of muscle by means of surface or needle electrodes. [NIH] Electrophoresis: An electrochemical process in which macromolecules or colloidal particles with a net electric charge migrate in a solution under the influence of an electric current. [NIH] Electrophysiological: Pertaining to electrophysiology, that is a branch of physiology that is concerned with the electric phenomena associated with
Glossary 275
living bodies and involved in their functional activity. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Erection: The condition of being made rigid and elevated; as erectile tissue when filled with blood. [EU] Erythropoietin: Glycoprotein hormone, secreted chiefly by the kidney in the adult and the liver in the fetus, that acts on erythroid stem cells of the bone marrow to stimulate proliferation and differentiation. [NIH] Escherichia: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria whose organisms occur in the lower part of the intestine of warmblooded animals. The species are either nonpathogenic or opportunistic pathogens. [NIH] Evacuation: An emptying, as of the bowels. [EU] Excipient: Any more or less inert substance added to a prescription in order to confer a suitable consistency or form to the drug; a vehicle. [EU] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Extracellular: Outside a cell or cells. [EU] Extracorporeal: Situated or occurring outside the body. [EU] Extremity: A limb; an arm or leg (membrum); sometimes applied specifically to a hand or foot. [EU] Febrile: Pertaining to or characterized by fever. [EU] Fibrin: The insoluble protein formed from fibrinogen by the proteolytic action of thrombin during normal clotting of blood. Fibrin forms the essential portion of the blood clot. [EU] Fibroblasts: Connective tissue cells which secrete an extracellular matrix rich in collagen and other macromolecules. [NIH] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Flaccid: Weak, lax and soft. [EU] Flexion: In gynaecology, a displacement of the uterus in which the organ is bent so far forward or backward that an acute angle forms between the fundus and the cervix. [EU]
276 Spinal Cord Injury
Forskolin: Potent activator of the adenylate cyclase system and biosynthesis of cyclic AMP. From the plant Coleus forskohlii. antihypertensive, positive ionotropic, platelet aggregation inhibitory, smooth muscle relaxant activities; also lowers intraocular pressure promotes release of hormones from the pituitary gland. [NIH]
the Has and and
Gait: Manner or style of walking. [NIH] Ganglion: 1. a knot, or knotlike mass. 2. a general term for a group of nerve cell bodies located outside the central nervous system; occasionally applied to certain nuclear groups within the brain or spinal cord, e.g. basal ganglia. 3. a benign cystic tumour occurring on a aponeurosis or tendon, as in the wrist or dorsum of the foot; it consists of a thin fibrous capsule enclosing a clear mucinous fluid. [EU] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Gingivitis: Inflammation of the gingivae. Gingivitis associated with bony changes is referred to as periodontitis. Called also oulitis and ulitis. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Groin: The external junctural region between the lower part of the abdomen and the thigh. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hormonal: Pertaining to or of the nature of a hormone. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hydrogen: Hydrogen. The first chemical element in the periodic table. It has the atomic symbol H, atomic number 1, and atomic weight 1. It exists, under normal conditions, as a colorless, odorless, tasteless, diatomic gas. Hydrogen
Glossary 277
ions are protons. Besides the common H1 isotope, hydrogen exists as the stable isotope deuterium and the unstable, radioactive isotope tritium. [NIH] Hyperbaric: Characterized by greater than normal pressure or weight; applied to gases under greater than atmospheric pressure, as hyperbaric oxygen, or to a solution of greater specific gravity than another taken as a standard of reference. [EU] Hypothermia: A low body temperature, as that due to exposure in cold weather or a state of low temperature of the body induced as a means of decreasing metabolism of tissues and thereby the need for oxygen, as used in various surgical procedures, especially on the heart, or in an excised organ being preserved for transplantation. [EU] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Implantation: The insertion or grafting into the body of biological, living, inert, or radioactive material. [EU] Impotence: The inability to perform sexual intercourse. [NIH] Incontinence: Inability to control excretory functions, as defecation (faecal i.) or urination (urinary i.). [EU] Infertility: The diminished or absent ability to conceive or produce an offspring while sterility is the complete inability to conceive or produce an offspring. [NIH] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Innervation: 1. the distribution or supply of nerves to a part. 2. the supply of nervous energy or of nerve stimulus sent to a part. [EU] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Interneurons: Most generally any neurons which are not motor or sensory. Interneurons may also refer to neurons whose axons remain within a particular brain region as contrasted with projection neurons which have
278 Spinal Cord Injury
axons projecting to other brain regions. [NIH] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Intramuscular: Within the substance of a muscle. [EU] Intrathecal: Within a sheath. [EU] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Irrigation: Washing by a stream of water or other fluid. [EU] Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU] Laceration: 1. the act of tearing. 2. a torn, ragged, mangled wound. [EU] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Leucine: An essential branched-chain amino acid important for hemoglobin formation. [NIH] Lidocaine: A local anesthetic and cardiac depressant used as an antiarrhythmia agent. Its actions are more intense and its effects more prolonged than those of procaine but its duration of action is shorter than that of bupivacaine or prilocaine. [NIH] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Lithotripsy: The destruction of a calculus of the kidney, ureter, bladder, or gallbladder by physical forces, including crushing with a lithotriptor through a catheter. Focused percutaneous ultrasound and focused hydraulic shock waves may be used without surgery. Lithotripsy does not include the dissolving of stones by acids or litholysis. Lithotripsy by laser is lithotripsy, laser. [NIH] Locomotion: Movement or the ability to move from one place or another. It can refer to humans, vertebrate or invertebrate animals, and microorganisms. [NIH]
Glossary 279
Locomotor: Of or pertaining to locomotion; pertaining to or affecting the locomotive apparatus of the body. [EU] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Manic: Affected with mania. [EU] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Medicament: A medicinal substance or agent. [EU] Medullary: Pertaining to the marrow or to any medulla; resembling marrow. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Mentors: Senior professionals who provide guidance, direction and support to those persons desirous of improvement in academic positions, administrative positions or other career development situations. [NIH] Methionine: A sulfur containing essential amino acid that is important in many body functions. It is a chelating agent for heavy metals. [NIH] Microdialysis: A technique for measuring extracellular concentrations of substances in tissues, usually in vivo, by means of a small probe equipped with a semipermeable membrane. Substances may also be introduced into the extracellular space through the membrane. [NIH] Micturition: The passage of urine; urination. [EU] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Monocytes: Large, phagocytic mononuclear leukocytes produced in the vertebrate bone marrow and released into the blood; contain a large, oval or somewhat indented nucleus surrounded by voluminous cytoplasm and numerous organelles. [NIH] Motility: The ability to move spontaneously. [EU] Mucosa: A mucous membrane, or tunica mucosa. [EU] Naloxone: A specific opiate antagonist that has no agonist activity. It is a
280 Spinal Cord Injury
competitive antagonist at mu, delta, and kappa opioid receptors. [NIH] Necrosis: The sum of the morphological changes indicative of cell death and caused by the progressive degradative action of enzymes; it may affect groups of cells or part of a structure or an organ. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuromuscular: Pertaining to muscles and nerves. [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neurosciences: The scientific disciplines concerned with the embryology, anatomy, physiology, biochemistry, pharmacology, etc., of the nervous sytem. [NIH] Neurosurgery: A surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord, and peripheral and sympathetic nervous system. [NIH] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine,
Glossary 281
epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Neutrophil: Having an affinity for neutral dyes. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used pharmacologically as a sympathomimetic. [NIH] Notochord: The rod-shaped body, composed of cells derived from the mesoblast and defining the primitive axis of the embryo. In lower vertebrates, it persists throughout life as the main axial support of the body, but in higher vertebrates it is replaced by the vertebral column. [NIH] Orofacial: Of or relating to the mouth and face. [EU] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Osteogenesis: The histogenesis of bone including ossification. It occurs continuously but particularly in the embryo and child and during fracture repair. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Oxidation: The act of oxidizing or state of being oxidized. Chemically it consists in the increase of positive charges on an atom or the loss of negative charges. Most biological oxidations are accomplished by the removal of a pair of hydrogen atoms (dehydrogenation) from a molecule. Such oxidations must be accompanied by reduction of an acceptor molecule. Univalent o. indicates loss of one electron; divalent o., the loss of two electrons. [EU] Oxygenation: The process of supplying, treating, or mixing with oxygen. No:1245 - oxygenation the process of supplying, treating, or mixing with oxygen. [EU] Palliative: 1. affording relief, but not cure. 2. an alleviating medicine. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU]
282 Spinal Cord Injury
Paraplegia: Paralysis of the legs and lower part of the body. [EU] Pelvic: Pertaining to the pelvis. [EU] Percutaneous: Performed through the skin, as injection of radiopacque material in radiological examination, or the removal of tissue for biopsy accomplished by a needle. [EU] Perineal: Pertaining to the perineum. [EU] Perivascular: Situated around a vessel. [EU] Peroxidase: A hemeprotein from leukocytes. Deficiency of this enzyme leads to a hereditary disorder coupled with disseminated moniliasis. It catalyzes the conversion of a donor and peroxide to an oxidized donor and water. EC 1.11.1.7. [NIH] Postoperative: Occurring after a surgical operation. [EU] Postprandial: Occurring after dinner, or after a meal; postcibal. [EU] Postural: Pertaining to posture or position. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Preclinical: Before a disease becomes clinically recognizable. [EU] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Preoperative: Preceding an operation. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Priapism: Persistent abnormal erection of the penis, usually without sexual desire, and accompanied by pain and tenderness. It is seen in diseases and injuries of the spinal cord, and may be caused by vesical calculus and certain injuries to the penis. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Prophylaxis: The prevention of disease; preventive treatment. [EU] Prostate: A gland in males that surrounds the neck of the bladder and the urethra. It secretes a substance that liquifies coagulated semen. It is situated in the pelvic cavity behind the lower part of the pubic symphysis, above the deep layer of the triangular ligament, and rests upon the rectum. [NIH]
Glossary 283
Prosthesis: An artificial substitute for a missing body part, such as an arm or leg, eye or tooth, used for functional or cosmetic reasons, or both. [EU] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Pseudomonas: A genus of gram-negative, aerobic, rod-shaped bacteria widely distributed in nature. Some species are pathogenic for humans, animals, and plants. [NIH] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Pupil: The aperture in the iris through which light passes. [NIH] Quadriplegia: Severe or complete loss of motor function in all four limbs which may result from brain diseases; spinal cord diseases; peripheral nervous system diseases; neuromuscular diseases; or rarely muscular diseases. The locked-in syndrome is characterized by quadriplegia in combination with cranial muscle paralysis. Consciousness is spared and the only retained voluntary motor activity may be limited eye movements. This condition is usually caused by a lesion in the upper BRAIN STEM which injures the descending cortico-spinal and cortico-bulbar tracts. [NIH] Quiescent: Marked by a state of inactivity or repose. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Reflux: A backward or return flow. [EU] Regeneration: The natural renewal of a structure, as of a lost tissue or part. [EU]
284 Spinal Cord Injury
Reperfusion: Restoration of blood supply to tissue which is ischemic due to decrease in normal blood supply. The decrease may result from any source including atherosclerotic obstruction, narrowing of the artery, or surgical clamping. It is primarily a procedure for treating infarction or other ischemia, by enabling viable ischemic tissue to recover, thus limiting further necrosis. However, it is thought that reperfusion can itself further damage the ischemic tissue, causing reperfusion injury. [NIH] Resuscitation: The restoration to life or consciousness of one apparently dead; it includes such measures as artificial respiration and cardiac massage. [EU]
Retina: The ten-layered nervous tissue membrane of the eye. It is continuous with the optic nerve and receives images of external objects and transmits visual impulses to the brain. Its outer surface is in contact with the choroid and the inner surface with the vitreous body. The outer-most layer is pigmented, whereas the inner nine layers are transparent. [NIH] Retraction: 1. the act of drawing back; the condition of being drawn back. 2. distal movement of teeth, usually accomplished with an orthodontic appliance. [EU] Retrograde: 1. moving backward or against the usual direction of flow. 2. degenerating, deteriorating, or catabolic. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Rigidity: Stiffness or inflexibility, chiefly that which is abnormal or morbid; rigor. [EU] Riluzole: A glutamate antagonist that has reported anticonvulsant activity. It has been shown to prolong the survival of patients with amyotrophic lateral sclerosis and has been approved in the United States to treat patients with ALS. [NIH] Saline: Salty; of the nature of a salt; containing a salt or salts. [EU] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and
Glossary 285
atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Skull: The skeleton of the head including the bones of the face and the bones enclosing the brain. [NIH] Sneezing: Sudden, forceful, involuntary expulsion of air from the nose and mouth caused by irritation to the mucous membranes of the upper respiratory tract. [NIH] Somatostatin: A polypeptide hormone produced in the hypothalamus, and other tissues and organs. It inhibits the release of human growth hormone, and also modulates important physiological functions of the kidney, pancreas, and gastrointestinal tract. Somatostatin receptors are widely expressed throughout the body. Somatostatin also acts as a neurotransmitter in the central and peripheral nervous systems. [NIH] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Species: A taxonomic category subordinate to a genus (or subgenus) and superior to a subspecies or variety, composed of individuals possessing common characters distinguishing them from other categories of individuals of the same taxonomic level. In taxonomic nomenclature, species are designated by the genus name followed by a Latin or Latinized adjective or noun. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Spermatozoa: Mature male germ cells that develop in the seminiferous tubules of the testes. Each consists of a head, a body, and a tail that provides propulsion. The head consists mainly of chromatin. [NIH] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Staphylococcus: A genus of gram-positive, facultatively anaerobic, coccoid bacteria. Its organisms occur singly, in pairs, and in tetrads and characteristically divide in more than one plane to form irregular clusters. Natural populations of Staphylococcus are membranes of warm-blooded animals. Some species are opportunistic pathogens of humans and animals. [NIH]
Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the
286 Spinal Cord Injury
gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Subarachnoid: Situated or occurring between the arachnoid and the pia mater. [EU] Superoxides: Highly reactive compounds produced when oxygen is reduced by a single electron. In biological systems, they may be generated during the normal catalytic function of a number of enzymes and during the oxidation of hemoglobin to methemoglobin. In living organisms, superoxide dismutase protects the cell from the deleterious effects of superoxide. [NIH] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Symptomatology: 1. that branch of medicine with treats of symptoms; the systematic discussion of symptoms. 2. the combined symptoms of a disease. [EU]
Synaptic: Pertaining to or affecting a synapse (= site of functional apposition between neurons, at which an impulse is transmitted from one neuron to another by electrical or chemical means); pertaining to synapsis (= pairing off in point-for-point association of homologous chromosomes from the male and female pronuclei during the early prophase of meiosis). [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Testicular: Pertaining to a testis. [EU] Thermoregulation: Heat regulation. [EU] Thoracic: Pertaining to or affecting the chest. [EU] Thromboembolism: Obstruction of a blood vessel with thrombotic material carried by the blood stream from the site of origin to plug another vessel. [EU] Thrombomodulin: A cell surface glycoprotein of endothelial cells that binds thrombin and serves as a cofactor in the activation of protein C and its regulation of blood coagulation. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]
Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Toxic:
Pertaining to, due to, or of the nature of a poison or toxin;
Glossary 287
manifesting the symptoms of severe infection. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Ulcer: A local defect, or excavation, of the surface of an organ or tissue; which is produced by the sloughing of inflammatory necrotic tissue. [EU] Ureter: One of a pair of thick-walled tubes that transports urine from the kidney pelvis to the bladder. [NIH] Ureteroscopy: Endoscopic examination, therapy or surgery of the ureter. [NIH]
Urinary: Pertaining to the urine; containing or secreting urine. [EU] Urogenital: Pertaining to the urinary and genital apparatus; genitourinary. [EU]
Urothelium: The epithelial lining of the urinary tract. [NIH] Ventilation: 1. in respiratory physiology, the process of exchange of air between the lungs and the ambient air. Pulmonary ventilation (usually measured in litres per minute) refers to the total exchange, whereas alveolar ventilation refers to the effective ventilation of the alveoli, in which gas exchange with the blood takes place. 2. in psychiatry, verbalization of one's emotional problems. [EU] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Xanthomatosis: A condition of morphologic change in which there is accumulation of lipids in the large foam cells of tissues. It is the cutaneous manifestation of lipidosis in which plasma fatty acids and lipoproteins are quantitatively changed. The xanthomatous eruptions have several different distinct morphologies dependent upon the specific form taken by the disease. [NIH]
288 Spinal Cord Injury
General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna
·
Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna
·
A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna
·
Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna
·
Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna
·
Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618
·
Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna
·
Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna
Glossary 289
·
Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna
·
Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna
290 Spinal Cord Injury
INDEX A Abdominal...... 29, 51, 108, 169, 228, 273, 274 Acetylcholine .......32, 33, 56, 60, 269, 280 Agrin ......................................................32 Algorithms..............................................92 Aluminum.............................................240 Amitriptyline ...........................................98 Anatomical.........25, 28, 49, 121, 124, 128 Anesthesia...................139, 167, 225, 269 Aneurysm ....................150, 155, 175, 270 Anorectal .............................................114 Anterograde.........................................121 Antibiotic ........................88, 116, 191, 285 Antibody....... 40, 57, 147, 170, 203, 270, 273, 279 Antigen ..........................56, 170, 270, 279 Antioxidant...............................19, 20, 146 Anxiety...........................................53, 172 Aorta ....................................................149 Arginine ...............................................120 Arteries ................................149, 155, 270 Assay...........................................120, 123 Atony ...................................................138 Atrophy ..........................................45, 196 Autonomic.......14, 15, 54, 56, 61, 79, 116, 165, 269, 281 Autopsy..................................................14 Axons....12, 13, 14, 15, 22, 24, 25, 26, 27, 28, 31, 32, 33, 34, 36, 37, 38, 39, 40, 59, 122, 123, 125, 277 Axotomy...............................122, 123, 124 B Bacteria ....37, 63, 88, 140, 142, 143, 191, 200, 203, 234, 270, 271, 275, 283, 285, 287 Bacteriuria ...........................................191 Bilateral..........................................96, 119 Biochemical ...........................35, 118, 223 Biosynthesis ..........................58, 129, 276 Bruxism................................................172 C Calcitonin.............................................129 Calculi ..................................................167 Capillary...............................................153 Capsules..............................................237 Carbohydrate.........................58, 236, 276 Cardiac .......57, 62, 63, 92, 141, 272, 278, 284, 286 Cardiological..........................................92 Cardiovascular.....................................158
Catheter .................. 51, 57, 170, 272, 278 Catheterization.............. 52, 116, 166, 191 Cerebellar ........................................... 121 Cerebellum.................................. 139, 272 Cerebral ... 22, 24, 40, 116, 160, 165, 172, 173, 190 Cerebrovascular ................................. 190 Cervical ...... 4, 12, 15, 116, 121, 124, 128, 130, 132, 136, 137, 163, 173, 220, 228, 229, 242 Chemoreceptor ................................... 128 Chemotherapy .................................... 241 Chronic..... 52, 67, 98, 115, 116, 119, 126, 129, 136, 158, 172, 183, 227, 229, 240, 241, 254 Cochlear................................................ 42 Colic .................................................... 167 Collapse ................................................ 37 Conduction.......................................... 130 Contractility ......................................... 167 Contusion.......................... 14, 24, 30, 152 Cortex ..... 22, 40, 121, 127, 139, 165, 273 Cortical................................ 121, 132, 230 Creatine .............................. 140, 228, 273 Cues................................................ 29, 31 Cyclic ........................ 35, 57, 58, 272, 276 Cytokines ........................................ 18, 19 Cytoskeleton ......................................... 25 D Degenerative ................................ 11, 235 Dendrites................................. 12, 60, 280 Deprivation............................ 22, 134, 222 Diaphragm ............................ 96, 108, 274 Diarrhea .............................................. 234 Diffusion .............................. 125, 156, 277 Distal ..................................... 62, 119, 284 Distention ............................................ 114 Diving ............................................ 87, 274 Dorsal................ 13, 29, 31, 119, 121, 241 Dysphagia ............................................. 52 Dystrophy............................................ 196 E Edema................................. 118, 130, 152 Ejaculation .................. 119, 150, 226, 228 Electromyography....................... 114, 223 Electrophoresis ................................... 120 Electrophysiological ............ 118, 119, 130 Enzyme ...... 20, 23, 25, 58, 61, 120, 142, 275, 282, 283 Erection............................... 164, 170, 282 Evacuation .......................................... 164
Index 291
Excipient ..............................................154 Excitation ...27, 58, 60, 139, 272, 275, 280 Extracellular....13, 37, 119, 140, 141, 275, 279 Extracorporeal .....................................167 Extremity........................93, 137, 227, 228 F Febrile..................................................191 Fibrin................................................40, 41 Fibroblasts ...........................................124 Fibrosis ................................................164 Flaccid ...........................................51, 165 Flexion .........................................137, 183 Forskolin ................................................35 G Gait ................................................96, 136 Ganglion ................13, 34, 35, 36, 37, 241 Gingivitis ..............................................116 Glucose .............................13, 22, 58, 276 Groin ......................................................13 H Hematology ...........................................73 Hemorrhage.........................................118 Hormones .....35, 57, 58, 61, 63, 273, 276, 283, 285 Hydrogen ..20, 59, 61, 120, 244, 272, 277, 281 Hyperbaric ...........................152, 156, 277 Hypothermia ..................................46, 153 I Immunity ..............................................223 Implantation .................................151, 164 Incontinence ...50, 51, 115, 164, 166, 221, 224 Infertility ...............................................116 Infiltration .............................................147 Inflammation .......16, 19, 62, 75, 129, 131, 147, 221, 284 Infusion ........................................100, 128 Innervation...................................116, 165 Intermittent.....................51, 116, 166, 191 Interneurons ..................13, 26, 28, 29, 44 Intestines .............................................166 Intramuscular.......................................214 Intrathecal............................................120 Intrinsic ............34, 36, 37, 41, 48, 49, 121 Irrigation.................................................15 Ischemia ...13, 24, 62, 146, 148, 149, 150, 152, 284 L Lesion ...15, 30, 33, 61, 87, 114, 124, 281, 283 Leucine ................................................154 Lipid .............................................119, 239 Lithotripsy ............................................167 Locomotion ............26, 121, 141, 226, 279
Lumbar.......................................... 12, 155 Lymphoma .................. 137, 138, 141, 279 M Manic .................................................... 70 Medicament ........................................ 149 Medullary .................................... 119, 128 Membrane...... 22, 25, 62, 119, 141, 279, 284 Mentors ............................................... 129 Methionine .......................................... 154 Microdialysis ....................................... 120 Micturition............................ 116, 118, 221 Mobility........................ 53, 68, 78, 97, 221 Molecular ...... 18, 20, 29, 30, 61, 63, 122, 123, 188, 193, 194, 283, 287 Monocytes............................................. 19 Morale ................................................... 17 Motility................................................... 99 Mucosa ............................... 133, 141, 279 N Naloxone................................. 42, 47, 240 Necrosis .. 17, 19, 21, 22, 27, 62, 152, 284 Neonatal.............................................. 127 Neoplastic ........................... 141, 240, 279 Neural .. 12, 26, 28, 30, 32, 41, 42, 43, 45, 49, 61, 118, 124, 132, 147, 152, 165, 167, 173, 235, 281 Neuromuscular .. 32, 56, 69, 95, 165, 227, 269 Neuronal ...... 16, 119, 121, 123, 125, 127, 128, 139, 148, 149, 241, 271 Neuropathy ... 75, 129, 131, 138, 146, 221 Neurophysiology ................................. 165 Neurotransmitter .... 21, 29, 30, 32, 33, 39, 44, 56, 60, 61, 128, 143, 269, 280, 281, 285 Niacin .................................................. 235 Norepinephrine ....... 44, 60, 108, 269, 280 O Orofacial................................................ 52 Osteogenesis ........................................ 79 Overdose ............................................ 235 Oxidation................. 21, 63, 119, 154, 286 Oxygenation........................ 152, 156, 281 P Paralysis .... 14, 61, 66, 68, 72, 73, 74, 76, 77, 79, 80, 87, 164, 191, 214, 271, 281, 283 Paraplegia....... 79, 95, 133, 138, 149, 153 Pelvic .......................... 119, 156, 224, 282 Percutaneous...... 159, 167, 170, 221, 278 Perineal............................................... 118 Perivascular .......................................... 19 Peroxidase .......................................... 120 Postoperative ...................... 150, 166, 167 Postprandial .......................................... 99
292 Spinal Cord Injury
Potassium............................................236 Preclinical ..................................45, 46, 48 Preoperative ........................................167 Prevalence.............................92, 150, 183 Priapism...............................................164 Progressive............................60, 152, 280 Prophylaxis ..........................116, 146, 191 Prostate ...............................150, 164, 166 Prosthesis ..............................43, 151, 163 Proteins ..... 20, 21, 22, 23, 24, 30, 31, 40, 57, 120, 122, 123, 203, 234, 236, 270, 272, 273 Psychiatric .............................................52 Psychiatry ........................61, 88, 283, 287 Q Quadriplegia ....................79, 87, 116, 283 Quiescent ..............................................24 R Receptor ......122, 128, 139, 203, 270, 272 Recombinant ...............................124, 154 Reflux ..................................................116 Reperfusion .....................20, 62, 146, 284 Resuscitation .........................................16 Retina ..................34, 35, 36, 39, 244, 284 Retraction ..............................................24 Retrograde.............................25, 121, 151 Riboflavin.............................................234 Rigidity...................................................78 Riluzole ................................................148 S Saline.....................................94, 109, 277 Sclerosis ...19, 50, 70, 151, 156, 166, 167, 168, 172, 190, 196, 284 Secretion .....................................143, 284 Selenium..............................................236 Skeletal ............................................13, 32 Skull .....................................................101 Sneezing................................................51 Somatostatin........................................230 Spasticity ....14, 26, 44, 95, 135, 150, 151, 154, 225
Species .. 30, 62, 140, 142, 143, 151, 275, 283, 285 Spectrum............................................... 76 Spermatozoa .............................. 152, 223 Sphincter......... 51, 63, 114, 118, 164, 285 Stabilization......................................... 172 Steroid..................... 16, 61, 147, 153, 283 Subarachnoid...................................... 128 Superoxides .................................... 19, 20 Symptomatic ....... 132, 143, 167, 241, 286 Symptomatology ................................. 167 Systemic ............................. 155, 241, 270 T Testicular ............................................ 151 Thermoregulation................................ 234 Thoracic ...... 12, 103, 108, 125, 130, 151, 221, 274 Thromboembolism ................................ 55 Thrombomodulin ................................. 153 Thyroxine ............................................ 236 Tomography.......................................... 16 Tone........................ 62, 99, 139, 271, 285 Toxic .... 17, 20, 24, 61, 63, 119, 139, 235, 244, 273, 281, 285, 287 Toxin ....................................... 37, 63, 286 Transplantation ..... 40, 41, 46, 49, 59, 277 U Ulcer...................................................... 54 Ureter .................................. 170, 278, 287 Ureteroscopy ...................................... 167 Urinary ..... 50, 51, 59, 115, 116, 132, 143, 164, 165, 166, 167, 169, 190, 200, 221, 224, 226, 241, 271, 277, 287 Urogenital............................................ 118 Urothelium........................................... 131 V Ventilation ......................... 69, 88, 96, 287 Viruses .................................................. 22 Visceral ....................................... 114, 165 X Xanthomatosis .................................... 138
Index 293
294 Spinal Cord Injury
