National Spinal Cord Injury Association Resource Center Fact Sheets

Copyright ©1995-98 NSCIA

Common Questions about Spinal Cord Injury

1. What is Spinal Cord Injury?
Spinal Cord Injury (SCI) is damage to the spinal cord that results in a loss of function such as mobility or feeling. Frequent causes of damage are trauma (car accident, gunshot, falls, etc.) or disease (polio, spina bifida, Friedreich's Ataxia, etc.). The spinal cord does not have to be severed in order for a loss of functioning to occur. In fact, in most people with SCI, the spinal cord is intact, but the damage to it results in loss of functioning. SCI is very different from back injuries such as ruptured disks, spinal stenosis or pinched nerves.

A person can "break their back or neck" yet not sustain a spinal cord injury if only the bones around the spinal cord (the vertebrae) are damaged, but the spinal cord is not affected. In these situations, the individual may not experience paralysis after the bones are stabilized.

2. What is the spinal cord and the vertebra?
The spinal cord is the major bundle of nerves that carry nerve impulses to and from the brain to the rest of the body. The brain and the spinal cord constitute the Central Nervous System. Motor and sensory nerves outside the central nervous system constitute the Peripheral Nervous System, and another diffuse system of nerves that control involuntary functions such as blood pressure and temperature regulation are the Sympathetic and Parasympathetic Nervous Systems.

The spinal cord is surrounded by rings of bone called vertebra. These bones constitute the spinal column (back bones). In general, the higher in the spinal column the injury occurs, the more dysfunction a person will experience. The vertebra are named according to their location. The eight vertebra in the neck are called the Cervical Vertebra. The top vertebra is called C-1, the next is C-2, etc. Cervical SCIs usually cause loss of function in the arms and legs, resulting in quadriplegia. The twelve vertebra in the chest are called the Thoracic Vertebra. The first thoracic vertebra, T-1, is the vertebra where the top rib attaches. Injuries in the thoracic region usually affect the chest and the legs and result in paraplegia.

The vertebra in the lower back - between the thoracic vertebra, where the ribs attach, and the pelvis (hip bone), are the Lumbar Vertebra. The sacral vertebra run from the pelvis to the end of the spinal column. Injuries to the five Lumbar vertebra (L-1 thru L-5) and similarly to the five Sacral Vertebra (S-1 thru S-5) generally result in some loss of functioning in the hips and legs.

3. What are the effects of SCI?
The effects of SCI depend on the type of injury and the level of the injury. SCI can be divided into two types of injury - complete and incomplete. A complete injury means that there is no function below the level of the injury; no sensation and no voluntary movement. Both sides of the body are equally affected. An incomplete injury means that there is some functioning below the primary level of the injury. A person with an incomplete injury may be able to move one limb more than another, may be able to feel parts of the body that cannot be moved, or may have more functioning on one side of the body than the other. With the advances in acute treatment of SCI, incomplete injuries are becoming more common.

The level of injury is very helpful in predicting what parts of the body might be affected by paralysis and loss of function. Remember that in incomplete injuries there will be some variation in these prognoses. Cervical (neck) injuries usually result in quadriplegia. Injuries above the C-4 level may require a ventilator for the person to breathe. C-5 injuries often result in shoulder and biceps control, but no control at the wrist or hand. C-6 injuries generally yield wrist control, but no hand function. Individuals with C-7 and T-1 injuries can straighten their arms but still may have dexterity problems with the hand and fingers.

Injuries at the thoracic level and below result in paraplegia, with the hands not affected. At T-1 to T-8 there is most often control of the hands, but poor trunk control as the result of lack of abdominal muscle control. Lower T-injuries (T-9 to T-12) allow good trunck control and good abdominal muscle control. Sitting balance is very good. Lumbar and Sacral injuries yield decreasing control of the hip flexors and legs.

Besides a loss of sensation or motor functioning, individuals with SCI also experience other changes. For example, they may experience dysfunction of the bowel and bladder. Sexual functioning is frequently affected: men with SCI may have their fertility affected, while women's fertility is generally not affected. Very high injuries (C-1, C-2) can result in a loss of many involuntary functions including the ability to breathe, necessitating breathing aids such as mechanical ventilators or diaphragmatic pacemakers. Other effects of SCI may include low blood pressure, inability to regulate blood pressure effectively, reduced control of body temperature, inability to sweat below the level of injury, and chronic pain.

4. How many people have SCI? Who are they?
Approximately 450,000 people live with SCI in the US. There are about 8,000 new SCIs every year; the majority of them (82%) involve males between the ages of 16-30. These injuries result from motor vehicle accidents (42%), violence (24%), or falls (22%). Quadriplegia is slightly more common than paraplegia.

5. Is there a cure for SCI?
Currently there is no cure for SCI. There are many researchers attacking this problem, and there have been many advances in the lab. Many of the most exciting advances have resulted in a decrease in damage at the time of the injury. Steroid drugs such as methylprednisolone reduce swelling, which is a common cause of secondary damage at the time of injury. The experimental drug Sygen®appears to reduce loss of function, although the mechanism is not completely understood.

6. Do people with SCI ever get better?
When a SCI occurs, there is usually swelling of the spinal cord. This may cause changes in virtually every system in the body. After days or weeks, the swelling begins to go down and people may regain some functioning. With many injuries, especially incomplete injuries, the individual may recover some functioning as late as 18 months after the injury. In very rare cases, people with SCI will regain some functioning years after the injury. However, only a very small fraction of individuals sustaining SCIs recover all functioning.

7. Does everyone who sustains SCI use a wheelchair?
No. Wheelchairs are a tool for mobility. High C-level injuries usually require that the individual use a power wheelchair. Low C-level injuries and below usually allow the person to use a manual chair. Advantages of manual chairs are that they cost less, weigh less, disassemble into smaller pieces and are more agile. However, for the person who needs a powerchair, the independence afforded by them is worth the limitations. Some people are able to use braces and crutches for ambulation. These methods of mobility do not mean that the person will never use a wheelchair. Many people who use braces still find wheelchairs more useful for longer distances. However, the therapeutic and activity levels allowed by standing or walking briefly may make braces a reasonable alternative for some people.

Of course, people who use wheelchairs aren't always in them. They drive, swim, fly planes, ski, and do many activities out of their chair. If you hang around people who use wheelchairs long enough, you may see them sitting in the grass pulling weeds, sitting on your couch, or playing on the floor with children or pets. And of course, people who use wheelchairs don't sleep in them, they sleep in a bed. No one is "wheelchair bound."

8. Do people with SCI die sooner?
Yes. Before World War II, most people who sustained SCI died within weeks of their injury due to urinary dysfunction, respiratory infection or bedsores. With the advent of modern antibiotics, modern materials such as plastics and latex, and better procedures for dealing with the everyday issues of living with SCI, many people approach the lifespan of non-disabled individuals. Interestingly, other than level of injury, the type of rehab facility used is the greatest indicator of long-term survival. This illustrates the importance of and the difference made by going to a facility that specializes in SCI. People who use vents are at some increased danger of dying from pneumonia or respiratory infection, but modern technology is improving in that area as well. Pressure sores are another common cause of hospitalization, and if not treated - death.

9. Do people with SCI have jobs?
People with SCI have the same desires as other people. That includes a desire to work and be productive. The Americans with Disabilities Act (ADA) promotes the inclusion of people with SCI to mainstreamin day-to-day society. Of course, people with disabilities may need some changes to make their workplace more accessible, but surveys indicate that the cost of making accommodations to the workplace in 70% of cases is $500 or less.

10. Can people with SCI have sex, children?
SCI frequently affects sexual functioning. However, there are many therapies that allow people with SCI to have an active and satisfying sex life. Fertility is also frequently affected in men with SCI. Methods similar to those used for non-disabled men with fertility problems have allowed many men with SCI to father their own children. Of course, adoption is another option. The fertility of women with SCI may be affected in the first months after injury. However, most women regain the ability to become pregnant after SCI. Many women with SCI are able to carry babies to full term. However, it is important that she consult a physician experienced in SCI.

11. What do I say when I meet a person with SCI?
"Hi."

A person with a SCI is no different from a non-disabled individual except in a few ways. People with SCI have the same hopes, interests and desires as other people. People with SCI are interested in sports - or not (just like non-disabled people). Although disabled individuals do some things differently than non-disabled individuals, the result is the same. It's important to remember that although SCI changes a person, they are still people, so treat them that way.

The most important thing to remember is: Life does not end with spinal cord injury.
 

Spinal Cord Injury Statistics

Although there is more information available about people who have a spinal cord injury than ever before, much of it is incomplete. Some of the statistical data is summarized below.

We have very little information about disease-induced spinal cord injury, except brief descriptions of the diseases. The following information relates to traumatic spinal cord injury. It was compiled primarily by researchers at the University of Alabama using data from the regional SCI Centers funded by NIDRR. For more information on spinal cord injury statistics call 205-934-3320, the National Spinal Cord Injury Statistical Center, Birmingham, Alabama.

Number of New Injuries per Year
32 injuries per million population or 7800 injuries in the US each year.

Most researchers feel that these numbers represent significant under-reporting. Injuries not recorded include cases where the patient dies instantaneously or soon after the injury, cases with little or no remaining neurological deficit, and people who have neurologic problems secondary to trauma, but are not classified as SCI. Researchers estimate that an additional 20 cases per million (4860 per year) die before reaching the hospital.

Total number of people with Spinal Cord Injury
Current estimates are 250,000 - 400,000 individuals living with Spinal Cord Injury or Spinal Dysfunction.

Causes of Spinal Cord Injury

Falls overtake motor vehicles as leading cause of injury after age. 45

Acts of violence and sports cause less injuries as age increases.

Acts of violence have overtaken falls as the second most common source of spinal cord injury in the last 4 years.

Marital status at injury:

Single 53%
Married 31%
Divorced 9%
Other 7%

Marital Status 5 years post-injury:

Indiv. with
Spinal Cord Injury
non-Spinal Cord
Injured Indiv.
Remain Single 88% 65%
Sill Married 81% 89%

Employment status among persons between 16 and 59 years of age at injury:

Employed 58.8%
Unemployed 41.2% (includes: students, retired, and homemakers)

Employment status among persons 8 years post-injury:

Paraplegic 34.4%
Quadriplegic 24.3%

People who return to work in the first year post-injury usually return to the same job for the same employer.

People who return to work after the first year post-injury either worked for different employers or were students who found work.

THE INJURY
Since 1988, 45% of all injuries have been complete, 55% incomplete. Complete injuries result in total loss of sensation and function below the injury level. Incomplete injuries result in partial loss. "Complete" does not necessarily mean the cord has been severed. Each of the above categories can occur in paraplegia and quadriplegia.

Except for the Incomplete-Preserved motor (functional), no more than 0.9% fully recover, although all can improve from the initial diagnosis.

Overall, slightly more than 1/2 of all injuries result in quadriplegia. However, the proportion of quadriplegics increase markedly after age 45, comprising 2/3 of all injuries after age 60 and 87% of all injuries after age 75.

92% of all sports injuries result in quadriplegia.

Most people with neurologically complete lesions above C-3 die before receiving medical treatment. Those who survive are usually dependent on mechanical respirators to breathe.

50% of all cases have other injuries associated with the spinal cord injury.

Most Frequent Neurological Category:

Complete Incomplete
Quadriplegia 17.5% 31.2%
Paraplegia 28.2% 23.1%

HOSPITALIZATION
(Important: This section applies only to individuals who were admitted to one of the hospitals designated as "Model" SCI centers by the National Institute of Disability and Rehabilitation Research.)

Only 10-15% of all people with injuries are admitted to the NIDRR SCI system. The remainder go to CARF facilities or to general hospitals in their local community.

Average length of stay (1992):

Quadriplegics 95 days
Paraplegics 67 days
All 79 days

Average charges (1990 dollars):

Quadriplegics $118,900
Paraplegics $ 85,100
All $ 99,553

Insurance Coverage:

Acute Coverage On-going Coverage (Many have more than one source.)
Private Insurance 53% 43%
Medicaid 25% 31%
Self-pay 1% 2%
Vocational Rehab 14% 16%
Worker's Comp 12% 11%
Medicare 5% 25%
Other 2%

AFTER THE HOSPITAL

Residence at discharge:

Private Residence 92%
Nursing Home 4%
Other Hospital 2%
Group Home 2%

There is no apparent relationship between severity of injury and nursing home admission, indicating that admission is caused by other factors (i.e. family can't take care of person, medical complications, etc.) Nursing home admission is more common among elderly persons.

Each year 1/3 to 1/2 of all people with SCI are re-admitted to the hospital. There is no difference in the rate of re-admissions between persons with paraplegia and quadriplegia, but there is a difference between the rate for those with complete and incomplete injuries.

Survival
Overall, 85% of SCI patients who survive the first 24 hours are still alive 10 years later, compared with 98% of the non-SCI population given similar age and sex.

Causes of Death
The most common cause of death is respiratory ailment, whereas, in the past, it was renal failure. An increasing number of people with SCI are dying of unrelated causes such as cancer or cardiovascular disease, similar to that of the general population.

Mortality rates are significantly higher during the first year after injury than during subsequent years.

We here at NSCIA are continually finding out about people who have lived 30, 40, and even 50 years after their injuries.
 

Sexuality After Spinal Cord Injury

Introduction
The extent to which sexual function is impaired depends on a variety of factors; the level of injury, the severity of damage, and the individual's gender.

Since a spinal cord injury (SCI) affects virtually every system of the human body, many people who sustain SCI have serious concerns about how their injuries have affected their ability to participate in and enjoy a sexual relationship. This document attempts to address some of the more common questions that arise on the topic of sex after a SCI. It also directs the reader to additional sources of more specific information.

Sexual function in humans is controlled by parts of the central nervous system (CNS), particularly the brain and spinal cord. Interruption to the CNS through injury to the spinal cord will therefore have some effect on sexual function. The extent to which sexual function is impaired, however, depends on a variety of factors including the level of injury, the severity of damage to the spinal cord, and whether the individual is male or female.
 

Choosing a Spinal Cord Injury Rehabilitation Facility

It is very important to be confident about the quality of care you or a loved one will receive when entering a rehabilitation program. Very few people have prior experience with rehabilitation or the effects of a spinal cord injury (SCI), thus, assessing the quality of a rehabilitation program is difficult.

Although the final decision will ultimately depend upon individual circumstances such as insurance and location, all rehabilitation programs have features which can be evaluated, regardless of your prior knowledge of rehabilitation or SCI.

It is vital to select a high quality rehabilitation program with skilled professionals to help a newly injured person develop the skills needed to maintain physical and emotional health throughout his/her lifetime.

A Quick Word about Rehabilitation Programs
In order to develop and maintain quality services for individuals with spinal cord injuries, rehabilitation staff and programs MUST specialize in treating SCI. This expertise is best acquired and maintained when staff members treat people with SCI on a regular basis. High quality rehabilitation programs are often located in facilities devoted exclusively to providing rehabilitation services, or in hospitals with designated SCI units.

In-patient SCI rehabilitation programs have features which distinguish them from the hospital programs where most people receive initial treatment. Rehabilitation programs are designed to serve people with a wide variety of skills and must address complex social and community issues. A rehabilitation team comprised of specialized medical personnel is used to accomplish these goals.

Teams should include social workers, occupational and physical therapists, recreational therapists, rehabilitation nurses, rehabilitation psychologists, vocational counselors, nutritionists and other specialists. The team is usually directed by a physiatrist, a physician specializing in physical medicine and rehabilitation (see Fact Sheet #11). Team members are jointly responsible for working with individuals and their families to develop effective rehabilitation and discharge plans.

The team should assign a program manager who will function as a contact with the rest of the team. This contact should meet with the person undergoing rehabilitation on a regular basis to discuss the rehabilitation plan and to address personal or family concerns.

Rehabilitation programs and acute care units may also differ in their emphasis on family and patient participation. Although many factors can contribute to someone's successful return to the community following a spinal cord injury, the education and active involvement of the newly injured person and the family is crucial. Rehabilitation programs should focus on maximizing a person's ability to be independent and should assist in making decisions about treatment and goals.

The following questions were developed to assist you in your decision making process. They can be used as a checklist to obtain the information required to make an informed decision when choosing a rehabilitation program.

SCI PROGRAM CHECKLIST

General Considerations
Peer support and contact with others who have a SCI can be extremely important in helping a person adjust to the injury. Peer support is generally most helpful and accepted when people share similar problems and issues. This is an especially important consideration when choosing programs for women. It is often difficult for women to find peer support because the incidence of SCI among women is much lower than it is for men.

  1. Are the beds for people with SCI in the same area of the facility?
  2. Are there people in the SCI program of the same age and sex as the person considering admission?
  3. Do the people in the SCI program have similar levels and kinds of spinal cord injury e.g., quadriplegia, paraplegia, incomplete and complete?
  4. What is the average number of people admitted annually to the SCI program? (program staff should treat people with SCI on a regular basis to acquire and maintain expertise.)
  5. Is the SCI program accredited by the Commission on the Accreditation of Rehabilitation Facilities (CARF) or the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)? Has it been designated as a Model Spinal Cord Injury Center by the National Institute of Disability Research and Rehabilitation (NIDRR)? Is the SCI program part of a SCI rehabilitation system operated by the state?
  6. Are there treatment specialists in the SCI program who speak the primary language of the individual seeking treatment?
  7. Will the treatment team develop a rehabilitation plan with both short and long term goals?
  8. Will an experienced case manager be assigned to help family members obtain medical payments and other benefits from public and private insurance?
  9. Will a team member be assigned to coordinate treatment and act as a contact for staff and family members?

Staffing/Rehabilitation Program Elements

  1. Is the physician in charge a Physiatrist? If not, what credentials does he/she have? How long has the physician in charge been directing programs specializing in SCI?
  2. Is there physician coverage seven days a week? Twenty-four hours a day?
  3. Do the regular nursing staff and other specialists responsible for providing treatment in the SCI program have specific training in treating SCI? Is the nursing staff employed by the hospital or employed through an outside agency?
  4. Does the program ensure the availability of rehabilitation nursing and respiratory care on a twenty-four hour basis?
  5. Are there consultants available at the facility or nearby medical centers? These should include neurosurgery, neurology, urology, orthopedics, plastic surgery, neuropsychology, internal medicine, gynecology, speech pathology, pulmonary medicine, general surgery and psychiatry.
  6. How often and for how long each day will participants get treatment by specialists such as occupational and physical therapists? Treatment should be no less then three hours per day.
  7. Are other specialties such as driver education, rehabilitation engineering, chaplaincy, and therapeutic recreation available if needed?
  8. Are activities planned for SCI program participants on weekends and evenings?
  9. How much time is spent teaching SCI program participants and their families about sexuality, bowel and bladder care, skin care and other essential self-care activities?
  10. Does the SCI program offer training in the management and hiring of personal care assistants? If so, how much time is spent by staff on this topic?

SPECIAL PROGRAMS

Pediatric Programs
Because incidence rates of SCI among children are relatively low, rehabilitation hospitals and programs usually do not maintain a separate program or unit exclusively for children with SCI. As an alternative, caregivers may consider facilities/programs which place children with SCI in rehabilitation units with other children with chronic disabilities. Hopefully, this will provide families and children with opportunities to share common experiences and information with each other, and may lead to the development of support networks in the community.

It is possible that children may be placed in units with other children who are too ill for rehabilitation. Children generally derive greater benefit if they undergo rehabilitation with other children who are actively involved in the rehabilitation process.

  1. Are the beds for children with spinal cord injuries in one area or in the same location as children with similar disabilities?
  2. Are children of the same sex and similar age currently in the program/facility?
  3. Is the physician in charge an individual with experience in rehabilitation? Does this physician have experience with children? If not, what are his/her qualifications? Do the other staff members specialize in pediatrics?
  4. How many children with SCI does the program/facility admit on an annual basis?
  5. Does the program/facility offer educational programs for children and young adults undergoing treatment? If not, does the facility coordinate tutoring programs with local schools? If so, who is responsible for payment?
  6. Are there child life or therapeutic recreation specialists on staff? (Child life specialists develop programs for children and families which strive to maintain normal living patterns and minimize the clinical environment. Therapeutic recreation specialists focus on teaching persons with disabilities new leisure and sports skills to maximize their independence).
  7. Are young siblings and friends allowed to visit the unit?
  8. Does the program/facility offer adaptive technology to help children communicate and learn?
  9. Is counseling available for siblings and families members?
  10. Is the equipment used by therapists, i.e. physical therapists and occupational therapists, appropriate for children?
  11. Does the facility/program provide patient education materials for children and family members?

Ventilator Programs
(See Fact Sheet #12 for more information on ventilator programs.)

  1. Is the physician who directs the program a board certified Pulmonologist or a Physiatrist? Does he/she have experience with SCI?
  2. Are ventilator users treated on the same unit?
  3. How long has the facility been providing treatment for ventilator users?
  4. If the treatment team determines that an individual cannot breathe independently, what kind of services are offered to assist them in living as independently as possible?
  5. Are people in the unit similar in age to the person considering admission?
  6. Will they have the opportunity to meet ventilator users who have returned to the community and maximized their independence?

SPECIAL CONSIDERATIONS

Psychosocial/Counseling Services

  1. What types and how many hours of psychosocial services are available? These should include peer support, individual and group psychotherapy, couples, vocational and substance abuse counseling.
  2. Does the facility offer sexuality and fertility counseling?

Facility Policies/Family Members

  1. Do facility policies encourage family members including siblings regardless of age, to participate in rehabilitation programs?
  2. Are there living arrangements for family members participating in training? What other services, parking, meals and etc. are provided?
  3. Are counseling and other social services available to family members?

Discharge Planning

  1. Are SCI program participants given educational self-care manuals when they are discharged?
  2. Will staff members develop a formal discharge plan with program participants and their families?
  3. Does the facility and discharge planner work with local Independent Living Centers? Do they incorporate referrals to these centers into their discharge planning?
  4. Is there an independent living unit available for program participants and families to practice self-care skills? Can family members stay there also?
  5. If the facility does not have an independent living unit do they encourage overnight therapeutic leave prior to discharge?
  6. Will someone be assigned as a liaison to provide follow-up services?
  7. Will a staff member visit or make arrangements for someone locally to evaluate the home for modifications?
  8. Will the follow-up plan include:
    • Referral to an appropriate physician and other medical specialists in the community?
    • Regular follow-up visits with this physician or a spinal cord injury unit physician?
    • Regular urological evaluations?
    • Scheduled equipment evaluations?
    • If appropriate, a thorough vocational evaluation and referrals to a vocational rehabilitation program?
    • Referrals to other services and resources in the community, e.g. elder services?

Before Making the Final Decision

  1. Were staff members helpful and friendly when information was requested?
  2. Were you offered an opportunity to tour the facility? If you were able to make a tour, what were your impressions of the overall atmosphere?
  3. Did you have an opportunity to speak with people currently participating in the program? If so, were they satisfied with their rehabilitation programs?

NSCIA is committed to assisting individuals with SCI and other concerned individuals find quality rehabilitation services. If you would like further assistance during the decision making process, please contact us to discuss your concerns.
 

Choosing a Spinal Cord Injury Rehabilitation Facility

It is very important to be confident about the quality of care you or a loved one will receive when entering a rehabilitation program. Very few people have prior experience with rehabilitation or the effects of a spinal cord injury (SCI), thus, assessing the quality of a rehabilitation program is difficult.

Although the final decision will ultimately depend upon individual circumstances such as insurance and location, all rehabilitation programs have features which can be evaluated, regardless of your prior knowledge of rehabilitation or SCI.

It is vital to select a high quality rehabilitation program with skilled professionals to help a newly injured person develop the skills needed to maintain physical and emotional health throughout his/her lifetime.

A Quick Word about Rehabilitation Programs
In order to develop and maintain quality services for individuals with spinal cord injuries, rehabilitation staff and programs MUST specialize in treating SCI. This expertise is best acquired and maintained when staff members treat people with SCI on a regular basis. High quality rehabilitation programs are often located in facilities devoted exclusively to providing rehabilitation services, or in hospitals with designated SCI units.

In-patient SCI rehabilitation programs have features which distinguish them from the hospital programs where most people receive initial treatment. Rehabilitation programs are designed to serve people with a wide variety of skills and must address complex social and community issues. A rehabilitation team comprised of specialized medical personnel is used to accomplish these goals.

Teams should include social workers, occupational and physical therapists, recreational therapists, rehabilitation nurses, rehabilitation psychologists, vocational counselors, nutritionists and other specialists. The team is usually directed by a physiatrist, a physician specializing in physical medicine and rehabilitation (see Fact Sheet #11). Team members are jointly responsible for working with individuals and their families to develop effective rehabilitation and discharge plans.

The team should assign a program manager who will function as a contact with the rest of the team. This contact should meet with the person undergoing rehabilitation on a regular basis to discuss the rehabilitation plan and to address personal or family concerns.

Rehabilitation programs and acute care units may also differ in their emphasis on family and patient participation. Although many factors can contribute to someone's successful return to the community following a spinal cord injury, the education and active involvement of the newly injured person and the family is crucial. Rehabilitation programs should focus on maximizing a person's ability to be independent and should assist in making decisions about treatment and goals.

The following questions were developed to assist you in your decision making process. They can be used as a checklist to obtain the information required to make an informed decision when choosing a rehabilitation program.

SCI PROGRAM CHECKLIST

General Considerations
Peer support and contact with others who have a SCI can be extremely important in helping a person adjust to the injury. Peer support is generally most helpful and accepted when people share similar problems and issues. This is an especially important consideration when choosing programs for women. It is often difficult for women to find peer support because the incidence of SCI among women is much lower than it is for men.

  1. Are the beds for people with SCI in the same area of the facility?
  2. Are there people in the SCI program of the same age and sex as the person considering admission?
  3. Do the people in the SCI program have similar levels and kinds of spinal cord injury e.g., quadriplegia, paraplegia, incomplete and complete?
  4. What is the average number of people admitted annually to the SCI program? (program staff should treat people with SCI on a regular basis to acquire and maintain expertise.)
  5. Is the SCI program accredited by the Commission on the Accreditation of Rehabilitation Facilities (CARF) or the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)? Has it been designated as a Model Spinal Cord Injury Center by the National Institute of Disability Research and Rehabilitation (NIDRR)? Is the SCI program part of a SCI rehabilitation system operated by the state?
  6. Are there treatment specialists in the SCI program who speak the primary language of the individual seeking treatment?
  7. Will the treatment team develop a rehabilitation plan with both short and long term goals?
  8. Will an experienced case manager be assigned to help family members obtain medical payments and other benefits from public and private insurance?
  9. Will a team member be assigned to coordinate treatment and act as a contact for staff and family members?

Staffing/Rehabilitation Program Elements

  1. Is the physician in charge a Physiatrist? If not, what credentials does he/she have? How long has the physician in charge been directing programs specializing in SCI?
  2. Is there physician coverage seven days a week? Twenty-four hours a day?
  3. Do the regular nursing staff and other specialists responsible for providing treatment in the SCI program have specific training in treating SCI? Is the nursing staff employed by the hospital or employed through an outside agency?
  4. Does the program ensure the availability of rehabilitation nursing and respiratory care on a twenty-four hour basis?
  5. Are there consultants available at the facility or nearby medical centers? These should include neurosurgery, neurology, urology, orthopedics, plastic surgery, neuropsychology, internal medicine, gynecology, speech pathology, pulmonary medicine, general surgery and psychiatry.
  6. How often and for how long each day will participants get treatment by specialists such as occupational and physical therapists? Treatment should be no less then three hours per day.
  7. Are other specialties such as driver education, rehabilitation engineering, chaplaincy, and therapeutic recreation available if needed?
  8. Are activities planned for SCI program participants on weekends and evenings?
  9. How much time is spent teaching SCI program participants and their families about sexuality, bowel and bladder care, skin care and other essential self-care activities?
  10. Does the SCI program offer training in the management and hiring of personal care assistants? If so, how much time is spent by staff on this topic?

SPECIAL PROGRAMS

Pediatric Programs
Because incidence rates of SCI among children are relatively low, rehabilitation hospitals and programs usually do not maintain a separate program or unit exclusively for children with SCI. As an alternative, caregivers may consider facilities/programs which place children with SCI in rehabilitation units with other children with chronic disabilities. Hopefully, this will provide families and children with opportunities to share common experiences and information with each other, and may lead to the development of support networks in the community.

It is possible that children may be placed in units with other children who are too ill for rehabilitation. Children generally derive greater benefit if they undergo rehabilitation with other children who are actively involved in the rehabilitation process.

  1. Are the beds for children with spinal cord injuries in one area or in the same location as children with similar disabilities?
  2. Are children of the same sex and similar age currently in the program/facility?
  3. Is the physician in charge an individual with experience in rehabilitation? Does this physician have experience with children? If not, what are his/her qualifications? Do the other staff members specialize in pediatrics?
  4. How many children with SCI does the program/facility admit on an annual basis?
  5. Does the program/facility offer educational programs for children and young adults undergoing treatment? If not, does the facility coordinate tutoring programs with local schools? If so, who is responsible for payment?
  6. Are there child life or therapeutic recreation specialists on staff? (Child life specialists develop programs for children and families which strive to maintain normal living patterns and minimize the clinical environment. Therapeutic recreation specialists focus on teaching persons with disabilities new leisure and sports skills to maximize their independence).
  7. Are young siblings and friends allowed to visit the unit?
  8. Does the program/facility offer adaptive technology to help children communicate and learn?
  9. Is counseling available for siblings and families members?
  10. Is the equipment used by therapists, i.e. physical therapists and occupational therapists, appropriate for children?
  11. Does the facility/program provide patient education materials for children and family members?

Ventilator Programs
(See Fact Sheet #12 for more information on ventilator programs.)

  1. Is the physician who directs the program a board certified Pulmonologist or a Physiatrist? Does he/she have experience with SCI?
  2. Are ventilator users treated on the same unit?
  3. How long has the facility been providing treatment for ventilator users?
  4. If the treatment team determines that an individual cannot breathe independently, what kind of services are offered to assist them in living as independently as possible?
  5. Are people in the unit similar in age to the person considering admission?
  6. Will they have the opportunity to meet ventilator users who have returned to the community and maximized their independence?

SPECIAL CONSIDERATIONS

Psychosocial/Counseling Services

  1. What types and how many hours of psychosocial services are available? These should include peer support, individual and group psychotherapy, couples, vocational and substance abuse counseling.
  2. Does the facility offer sexuality and fertility counseling?

Facility Policies/Family Members

  1. Do facility policies encourage family members including siblings regardless of age, to participate in rehabilitation programs?
  2. Are there living arrangements for family members participating in training? What other services, parking, meals and etc. are provided?
  3. Are counseling and other social services available to family members?

Discharge Planning

  1. Are SCI program participants given educational self-care manuals when they are discharged?
  2. Will staff members develop a formal discharge plan with program participants and their families?
  3. Does the facility and discharge planner work with local Independent Living Centers? Do they incorporate referrals to these centers into their discharge planning?
  4. Is there an independent living unit available for program participants and families to practice self-care skills? Can family members stay there also?
  5. If the facility does not have an independent living unit do they encourage overnight therapeutic leave prior to discharge?
  6. Will someone be assigned as a liaison to provide follow-up services?
  7. Will a staff member visit or make arrangements for someone locally to evaluate the home for modifications?
  8. Will the follow-up plan include:
    • Referral to an appropriate physician and other medical specialists in the community?
    • Regular follow-up visits with this physician or a spinal cord injury unit physician?
    • Regular urological evaluations?
    • Scheduled equipment evaluations?
    • If appropriate, a thorough vocational evaluation and referrals to a vocational rehabilitation program?
    • Referrals to other services and resources in the community, e.g. elder services.

Before Making the Final Decision

  1. Were staff members helpful and friendly when information was requested?
  2. Were you offered an opportunity to tour the facility? If you were able to make a tour, what were your impressions of the overall atmosphere?
  3. Did you have an opportunity to speak with people currently participating in the program? If so, were they satisfied with their rehabilitation programs?

NSCIA is committed to assisting individuals with SCI and other concerned individuals find quality rehabilitation services. If you would like further assistance during the decision making process, please contact us to discuss your concerns.
 

Spinal Cord Injury Rehabilitation Programs - CARF/NIDRR

Spinal Cord Injury Programs Accredited by CARF
The following is a list of SCI programs accredited by the Commission on Accreditation of Rehabilitation Facilities (CARF). CARF is a non-profit organization established to adopt and apply standards within facilities throughout the nation. CARF has currently accredited ninety-three Spinal Cord Injury Programs. Accreditation by CARF is voluntary.

This policy and list is current as of March, 1996

CARF Facilities

Arkansas
HEALTHSOUTH Rehabilitation
Hospital of Fort Smith
1401 South J Street
Fort Smith, AR 72901
501-785-3300
Baptist Rehab. Institute of Arkansas
9601 Interstate 630, Exit 7
Little Rock, AR 72205-7299
501-223-7578
Arizona
Good Samaritan Regional Medical Center
Samaritan Rehabilitation Institute
1111 East McDowell Road
Phoenix, AZ 85006
602-239-2119
Samaritan Rehabilitation Institute
1012 E. Willetta St.
Phoenix, AZ 85006-2749
602-239-2119
California
Rancho Los Amigos Medical Center
7601 East Imperial Highway
Downey, CA 90242
310-940-7022
Leon S. Peters Rehabilitation Center
Fresno Community Hospital
Fresno and R Streets
Fresno, CA 93715
209-442-3957
St. Jude Medical Center
101 East Valencia Mesa Dr.
Fullerton, CA 92634
714-871-3280
Center for Diagnostic and Rehab. Medicine
Daniel Freeman Memorial Hospital
333 North Prairie Avenue
Inglewood, CA 90301
310-674-7050
Long Beach Memorial Rehabilitation Hospital
2801 Atlantic Avenue
Long Beach, CA 90801-1428
310-933-2400
Northridge Hospital Medical Center
18300 Roscoe Blvd.
Northridge, CA 91328
818-885-5338
Casa Colina Hospital for
Rehabilitative Medicine\
255 East Bonita Avenue
Pomona, CA 91767
909-593-7521
Norman B. Nelson Rehabilitation Center
Santa Clara Valley Medical Center
751 South Bascom Avenue
San Jose, CA 95128
408-299-6841
Rehabilitation Institute at Santa Barbara
2415 De La Vina Street
Santa Barbara, CA 93105
805-687-7444
Colorado
Craig Hospital
3425 South Clarkson Street
Englewood, CO 80110
303-789-8000
Connecticut
Gaylord Hospital, Inc.
Gaylord Farm Road
Wallingford, CT 06492
203-284-2804
Delaware
Alfred I. DuPont Institute of the Nemours Foundation
Division of Rehabilitation Medicine
1600 Rockland Road
Wilmington, DE 19899
302-651-5602
District of Columbia
National Rehabilitation Hospital
102 Irving Street, N.W.
Washington, DC 20010-2949
202-877-1000
Florida
Pinecrest Rehabilitation Hospital
5360 Linton Boulevard
Delray Beach, FL 33484
407-495-0400
HEALTHSOUTH-Sunrise Rehabilitation Hospital
4399 Nob Hill Road
Fort Lauderdale, FL 33351-5899
305-749-0300
UpReach Pavilion
8900 N.W. 39th Avenue
Gainesville, FL 32606
904-338-0091

Brooks Rehabilitation Hospital
3599 University Blvd. South
Jacksonville, Florida 32216
(904) 345-7600

HEALTHSOUTH-Rehabilitation Hospital
901 North Clearwater-Largo Road
Largo, FL 34640
813-586-2999
Jackson Memorial Rehabilitation Center
1611 N.W. 12th Avenue
Miami, FL 33134
305-585-7303
Columbia Park Rehabilitation and Spinal Center
Columbia Park Medical Center
818 South Main Lane
Orlando, FL 32801
407-649-6148
Rehabilitation Institute of
West Florida at West
Florida Regional Medical Center
8391 North Davis Highway
Pensacola, FL 32523-8900
904-474-4000
HEALTHSOUTH Rehabilitation Hospital of Tallahassee
1675 Riggins Road
Tallahassee, FL 32308
904-656-4800
Tampa General Rehabilitation Center
Davis Island
Tampa, FL 33601
813-251-7750
Georgia
Emory Hospitals Center for Rehabilitation Medicine
1441 Clifton Road, NE
Atlanta, GA 30322
404-712-5515
The Shepherd Center for Treatment of Spinal Cord Injuries, Inc.
2020 Peachtree Road, N.W.
Atlanta, GA 30309
404-352-2020
Walton Rehabilitation Hospital
1355 Independence Drive
Augusta, GA 30901-1037
706-823-8506
Central Georgia Rehabilitation Hospital
3351 Northside Drive
Macon, GA 31210
912-471-3500
Hawaii
The Rehabilitation Hospital of the Pacific
226 North Kuakini Street
Honolulu, HI 96817
808-531-3511
Illinois
Rehabilitation Institute of Chicago
345 East Superior Street
Chicago, IL 60611
312-908-2877
Midwest Institute for Rehabilitation
EHS Christ Hospital and Medical Center
4440 West 95th Street
Oak Lawn, IL 60453
708-346-5201
Memorial Medical Center
Regional Rehabilitation Center
800 North Rutledge
Springfield, IL 62781
217-788-3302
Indiana
Rehabilitation Hospital of Indiana
4141 Shore Drive
Indianapolis, IN 46254-2607
317-329-2106
Iowa
Younker Rehabilitation Center
1200 Pleasant Street
Des Moines, IA 50309
515-241-6434
Covenant Rehabilitation Center
Covenant Medical Center
3421 West 9th Street
Waterloo, IA 50702
319-291-3336
Kansas
Mid-America Rehabilitation Hospital
5701 West 110th Street
Overland Park, KS 66211
913-491-2400
Kentucky
Cardinal Hill Rehabilitation Hospital
2050 Versailles Road
Lexington KY 40504
606-254-5701
Frazier Rehab. Center
220 Abraham Flexner Way
Louisville, KY 40202
502-582-7400
Louisiana
Rehabilitation Institute of New Orleans
4444 General Meyer
New Orleans, LA 70131
504-363-2200
Massachusetts
New England Rehabilitation Hospital
Two Rehabilitation Way
Woburn, MA 01801
617-935-5050
Maryland
Kernan Orthopedics and Rehabilitation Hospital
2200 Kernan Drive,
Baltimore MD 21230
410.448.6310
Rehabilitation Center
The Good Samaritan Hospital of
Maryland, Inc.
5601 Loch Raven Boulevard
Baltimore, MD 21239
410-532-3900
Michigan
Rehabilitation Institute of Michigan
261 Mack Boulevard
Detroit, MI 48201
313-745-9731
Mary Free Bed Hospital and
Rehabilitation Center
235 Wealthy Street, S.E.
Grand Rapids, MI 49503
616-242-0404
Minnesota
Regional Rehabilitation Center of Duluth
502 East 2nd Street
Duluth, MN 55805
218-720-1248
Sister Kenny Institute
800 East 28th Street at Chicago Avenue
Minneapolis, MN 55407
612-863-4463
Mayo Clinic/St. Mary's Hospital
Rehabilitation Unit
3 Mary Brigh, St. Mary's Hospital
1216 Second Street, S.W.
Rochester, MN 55902
507-255-4613
Missouri
Howard A. Rusk Rehabilitation Center
One Hospital Drive
Columbia, MO 65212
314-882-1071
The Rehabilitation Institute
3011 Baltimore Ave.
Kansas City, MO 64108
816-756-2250
The Jewish Hospital of St. Louis at Washington University Department of Rehabilitation Medicine
216 South Kings Highway
St. Louis, MO 63110
314-454-5277
SSM Rehabilitation Institute
555 North New Ballas Road, Suite 150
St. Louis, MO 63141
314-768-5304
SSM Rehabilitation Institute/St. Mary's
6420 Clayton Road
St. Louis, MO 63117
314-768-5304
St. John's Mercy Rehabilitation Center
615 South New Ballas Road
St. Louis, MO 63141
314-569-6041
Nebraska
Immanuel Rehabilitation Center
6901 North 72nd Street
Omaha, NE 68122
402-572-2295
New Hampshire
Northeast Rehabilitation Hospital
70 Butler Street
Salem, NH 03079
603-893-2900
New Jersey
Children's Specialized Hospital
150 New Providence Road
Mountainside, NJ 07092
908-233-3720
Betty Bacharach Rehabilitation Hospital
61 West Jimmie Leeds Road
Pomona, NJ 08240-0723
609-748-5460
Kessler Institute for Rehabilitation, Inc.
1199 Pleasant Valley Way
West Orange, NJ 07052
201-731-3600
New Mexico
HealthSouth Rehabilitation Hospital
7000 Jefferson, NE
Albuquerque, NM 87102
505-766-4700
St. Joseph Rehabilitation Hospital and
Outpatient Center
505 Elm Street, N.W.
Albuquerque, NM 87102
505-766-4700
New York
University of Rochester Medical Center
Strong Memorial Hospital/Rehab. Unit
Box 664, 601 Elmwood Avenue
Rochester, NY 14642
716-275-3271
Sunnyview Rehabilitation Hospital
1270 Belmont Avenue
Schenectady, NY 12308
518-382-4500
North Carolina
Thoms Rehabilitation Hospital
Health Services Corporation
68 Sweeten Creek Road
Asheville, NC 28803
704-274-2400
Charlotte Institute of Rehabilitation
1100 Blythe Boulevard
Charlotte, NC 28203
704-355-4300
Southeastern Regional
Rehabilitation Center
Cape Fear Valley Medical Center
1638 Owen Drive
Fayetteville, NC 28302
919-323-6087
Ohio
Drake Center, Inc.
151 West Galbraith Road
Cincinnati, OH 45216
513-948-2500
The Rehabilitation Center
Good Samaritan Hospital
375 Dixmyth Avenue
Cincinnati, OH 45220-2489
513-872-2481
MetroHealth Center for Rehabilitation
2500 MetroHealth Drive
Cleveland, OH 44109-1998
216-459-4874
Ohio State University Hospitals
Dodd Hall
480 West 9th Avenue
Columbus, OH 43210-1228
614-293-8542
Rehabilitation Institute of Ohio
at Miami Valley Hospital
One Wyoming Street
Dayton, OH 45409
513-220-2065
St. Elizabeth Rehabilitation Center
601 Edwin C. Moses Boulevard
Dayton, OH 45408
513-229-6081
Pennsylvania
University Hospital Rehabilitation Center
for Children and Adults
500 University Drive
Hershey, PA 17033
717-531-7100
HEALTHSOUTH of Pittsburgh
dba HEALTHSOUTH Rehabilitation Hospital
of Greater Pittsburgh
2380 McGinley Road
Monroeville, PA 15146
412-856-2400
Magee Rehabilitation Hospital
Six Franklin Plaza
Philadelphia, PA 19102
215-587-3000
Thomas Jefferson University Hospital
Department of Rehabilitation Medicine
111 South 11th Street
324 Main Building
Philadelphia, PA 19107
215-955-6573
Harmarville Rehabilitation Center, Inc.
Guys Run Road
Pittsburgh, PA 15238
412-828-1300
Allied Services Institute of
Rehabilitation Medicine
475 Morgan Highway
Scranton, PA 18501-1103
717-348-1300
South Carolina
HEALTHSOUTH Rehab. Hospital
2935 Colonial Drive
Columbia, SC 29203
803-254-7777
HEALTHSOUTH Rehab. Center
900 East Cheves Street
Florence, SC 29506
803-679-9000
Roger C. Peace Rehabilitation Hospital
701 Grove Road
Greenville, SC 29605
803-455-7702
Tennessee
Patricia Neal Rehabilitation Center
1901 Clinch Avenue, SW
Knoxville, TN 37916
615-541-1621
Baptist Memorial Hospital
Medical Center Rehabilitation Unit
899 Madison Ave.
Memphis, TN 38146
901-522-6550
Texas
Baylor Institute for Rehabilitation at Gaston Episcopal Hospital
3505 Gaston Avenue
Dallas, TX 75246
214-826-7030
HEALTHSOUTH Rehabilitation Center
2124 Research Row
Dallas, TX 75235
214-904-6110
Rio Vista Rehabilitation Hospital
1740 Curie Drive
El Paso, TX 79902-2901
915-543-6889
The Institute for Rehab. & Research
1333 Moursund Street
Houston, TX 77030-3405
713-799-5000
Utah
Division of Physical Medicine & Rehab.
University of Utah
50 North Medical Drive
Salt Lake City, UT 84132
801-581-2251
Virginia
The Rehabilitation and Research Center of Medical College of Virginia Hospitals
1300 East MArshall Street
Richmond, VA 23298-0661
804-828-8061
West Virginia
Medical Rehabilitation Center at Charleston Area Medical Center
501 Morris Street
Charleston, WV 25325
304-348-6327
Wisconsin
The Spinal Cord Injury Center
Froedtert Memorial Lutheran Hospital
9200 West Wisconsin Avenue
Milwaukee, WI 53226
414-259-3657

NIDRR Model Spinal Cord Injury Systems
The thirteen SCI rehabilitation programs listed below are designated as Model Systems by the National Institute of Disability and Rehabilitation Research (NIDRR). To qualify for designation as a Model System and to receive funding from NIDRR, rehabilitation programs must utilize and evaluate a prototype of SCI treatment based on providing continuity of care through the development of five areas within a system.

Model Spinal Cord Injury Systems must have:

  1. Emergency medical services.
  2. Expertise in treating trauma.
  3. A comprehensive rehabilitation program.
  4. Vocational and psychological counseling services.
  5. Community reintegration services.

Model systems must also conduct research of interest to NIDRR and collect data on SCI. In order to gain and maintain expertise in treating SCI, designated systems are expected to provide care to a significant volume of people with SCI, although consumers should be advised that designated systems are not evaluated for their quality of care.

As with any treatment decision, NSCIA recommends that persons who have spinal cord injuries should thoroughly investigate any medical or rehabilitation treatment facility before deciding to be admitted.

An updated listing can be found at: Model SCI Care Systems.

What's New in Spinal Cord Injury Treatment and Cure Research?

When someone sustains a spinal cord injury (SCI), one of the most difficult issues to deal with is that there is no "cure" at the present time. One would think that, with the "explosion in scientific knowledge" we hear about almost every day, SOMEONE would be doing SOMETHING to find a cure for people with SCI. If we can achieve the impossible in other areas, like transplanting entire organs and organ systems from one person to another and isolating human genes, why can't we figure out why the spinal cord does not repair itself and then do something to correct this biological problem? Compared to a lot of the scientific puzzles that HAVE been solved, it shouldn't be all that difficult...

There are really two separate issues involved in this assumption:

  1. Is the scientific question, "Why won't the spinal cord regenerate?" easy to answer?
  2. What's being done to find a cure?

Let's look at these issues and put them into the context of what scientists have been doing about SCI over the past half century.

Before World War II, an injury to the spinal cord was considered to be a fatal condition. If you did not die as a direct result of the injury, you probably would die within a few weeks or months from complications, such as a kidney infection, respiratory problems, or badly infected skin sores.

Fortunately, an improved understanding of SCI led to better patient management, enabling many people to survive their injuries and the initial period afterwards. In addition, the discovery of penicillin and sulfa drugs made common, but life-threatening complica-tions like kidney and skin infections manageable conditions rather than potential killers.

Because the spinal cord carries vital information to the brain, the muscles and many organs, the fact that SCI is now a survivable injury is a miracle itself. However, this miracle leads to another pressing need - to find a way to reverse, or at least diminish, the devastating physical effects of the injury.

The Search For the Cure
The 1980's and 1990's have been an exciting time for people interested in spinal cord injury repair and regeneration. Both in terms of treat-ment techniques and general knowledge about nervous system function, the progress that has occurred in recent years is encouraging.

The search for a cure involves one of the most complex parts of the human body. The spinal cord is an integral part of the body's most specialized system, the central nervous system (CNS). The CNS consists primarily of the brain and spinal cord.

A major role of the spinal cord is to carry mes-sages to and from all parts of the body and the brain. Some of these messages control sensation, such as knowing your finger is touching a hot stove, while others regulate movement. The spinal cord also carries mes-sages that regulate autonomic functions such as heart rate and breathing - over which we generally do not exert voluntary control.

The spinal cord carries these messages through a network of nerves which link the cells of the spinal cord to target cells in all other systems of the body. An individual nerve cell is called a neuron, each with receptive branching fibers called dendrites. The axon, carrying an output signal, extends from the cell body, and is covered by a protective fatty substance called a myelin sheath which helps the impulse travel efficiently.

A nerve impulse from one neuron is picked up by the dendrite of the next nerve cell in the pathway at a specialized connection called a synapse. An electrochemical reaction causes the impulse to "jump" across the synapse and the signal stimulates the second nerve cell and the impulse then travels down its axon. The message is picked up and transmitted by a series of neurons until the connection is complete.

There are millions of nerve cells within the spinal cord itself. Some of these lower motor neurons receive motor commands from the brain and send their signals directly to the muscles. Other spinal cord neurons form relay pathways for information travelling up or down the length of the spinal cord. Still other spinal cord neurons remain intact and form intricate circuits below the level of injury. Because cells below the injury are no longer under voluntary control, they cannot be utilized as effectively and may cause unintentional movements such as spasms.

Regeneration
Most of the cells in the human body have the ability to repair themselves after an injury. If you cut your finger, often you have a visible laceration for a few days or weeks, followed by the formation of a scar. In time, you may not be able to tell that the cut had occurred. This indicates that skin cells regenerate, just like cells in the blood vessels, organs and many other tissues. Peripheral nerves (nerve fibers outside the brain and spinal cord), such as those located in your fingertips, also regenerate, although this process is different from that in the skin and other organs.

For years, scientists have focused on the big mystery: "Why doesn't the central nervous system regenerate?" This question is even more perplexing because we know that central nerves in lower animal species CAN regenerate. There are no definite answers to this mystery yet, but scientists are exploring the questions in many ways.

Basic Cell Research
An important avenue of research is to look at normal cell function in the CNS of mammals. Scientists investigating this area of research are attempting to identify and describe cellular interactions in properly working systems. In addition, they are working with SCI models in an attempt to identify and explain what occurs after an injury.

Through cell research, scientists are trying to identify the following:

  1. What substances are present in the CNS which "switch off" CNS nerve growth in mammals?
    • It has been shown that regeneration occurs in lower animals, as well as in mammalian fetuses in the very early stages of development. At some point in development, the cells appear to lose the ability to regenerate. This loss may be related to the maturation of the nerve cells or to changes in other nervous system cells past which axons must regenerate.
  2. What growth inhibiting factors, present in the CNS of mammals, prevent nerve cells from regenerating and reestablishing connections (synapses)?
    • Scientists have identified some proteins in the myelin sheath surrounding spinal cord axons which inhibit nerve cell growth. Additionally, other regeneration-inhibiting proteins have been identified on the surfaces of cells that form the nervous system equivalent of a "scar". Some scientists believe that nerve cells can be encouraged to regrow and re-establish functional synapses by removing or altering this cellular "scar". Antibodies generated against some of these proteins can neutralize the inhibitors and allow growth to occur. The ability of central nerves to regenerate in lower animals is thought to be due to the lack of inhibitors in their CNS.
  3. Can growth stimulating substances can be introduced into the mammalian CNS to encourage nerve growth and synapse development?
    • Investigators are attempting to alter the environment around the injury site to encourage nerve cell growth and repair. As described above, our peripheral nerves can regenerate. This is due to the presence of cell proteins that stimulate rather than inhibit nerve growth. When these cells or the factors they produce such as "growth factors that nourish nerve cells are introduced into the CNS, central nerve regrowth can occur. Finding ways to effectively introduce these cells or substances to achieve functional recovery is a major goal of "cure" research today.

Development of New Therapeutic Approaches
Ongoing research using animal models to test possible new therapies is progressing more rapidly than ever before. This type of research takes several forms that can best be explained as they apply to solving certain types of damage that result from SCI. There are three major classes of damage to neural tissues that have been identified, each requiring a different therapeutic approach:

  1. Death of nerve cells within the spinal cord. Because nerve cells lose the ability to undergo cell division as they mature into the highly specialized forms that make up our nervous systems, the death of nerve cells due to injury presents a difficult problem. No functional connections can be established if the nerves no longer exist. Therefore, replacement of nerve cells may be required.
  2. Disruption of nerve pathways. When the long axons carrying signals up and down the spinal cord are cut or damaged to the point where they break down after an injury, the parents nerve cells and axons often survive up to the point where the injury occurred. In this case, regeneration of damaged axons is a real possibility to re-establish connections of nerve circuits.
  3. Demyelination, or the loss of the insulation around axons. Animal studies and recent studies of human specimens have established that in some types of SCI, the nerve cells and axons may not be lost or interrupted, but that the loss of function may be due to a loss of myelin sheaths. As described above, myelin sheaths provide insulation so that electrochemical signals are carried efficiently down the long, thin axons. This type of damage may be the most amenable to treatment because rewiring of complex circuits may not be needed and remyelination of axons is known to be possible.

Although specific human injuries may involve any or all types of damage just described, therapies developed to combat any one of them might restore important functions. The "cure" for spinal cord injury may take the form of multiple strategies, each in turn restoring functions that make important improvements in the quality of life for a spinal cord injured individual.

The approach to "cure" research then, is to concentrate on techniques that hold the promise of repairing specific types of spinal cord damage. With the explosion of efforts and progress in the fields of Neuroscience and Molecular Biology (sometimes called genetic engineering), the scope of possible new therapies is wider than ever before.

Replacement of Nerve Cells
Mature nerve cells cannot divide to heal a wound as skin cells can. Replacement of nerve cells requires transplantation of new nerve cells into the site of the injury with the hope that they will mature and integrate themselves into the host nervous system. One approach is to transplant healthy CNS cells from the same animal species.

Researchers have been unanimous in their agreement that transplantation of adult nerve tissues does not work, while embryonic or fetal transplantation can be quite successful. The embryonic tissues do grow and develop, and scientists hope that they will form circuits that will return important functions to areas below the injury. Research to date has not supported the hope that host axons would use these grafts as "bridges" across the injury site. An important consideration is that if fetal tissue transplants prove successful in animal models, transferring this approach to human beings will involve important ethical considerations regarding donor tissues and other important questions about immune rejection of cells transplanted from one individual to another.

Another approach that may avoid some of those problems is the use of genetic engineering to manufacture "cell lines" that would work as nerve cells after grafting. This approach involves inserting segments of DNA (genes) into fetal nerve cells that allow the cells to divide indefinitely, creating an ongoing supply of donor tissue. The use of purely neuronal cell lines diminishes the chances of immunological rejection of the grafts. Recently, rodent cell lines have been developed that stop dividing after transplantation (so there is no risk of tumor formation), and that mature into very specialized nerve cells. Research has not yet shown that these cells can restore function after spinal cord injury.

Very recently, scientists have learned that some cells of the adult CNS can be stimulated to divide and develop into new nerve cells. This exciting finding has opened up new possibilities for cell line development without a need for fetal tissue donors.

Regeneration of Damaged Axons
Nerve cells in both the central and peripheral nervous systems are associated with helper cells called neuroglial cells. After injury, the CNS helper cells largely inhibit regeneration, while those of the peripheral nerves, the Schwann cells, stimulate regeneration, even in humans. Scientists are attempting to isolate these cells from peripheral nerves and transplant them into the spinal cord to induce regeneration by providing an altered, supportive environment. In this strategy, a SCI individual could act as their own donor, since Schwann cells can be obtained from biopsies of peripheral nerves in adults.

Schwann cells, nerve cells and some other cells make proteins known to nourish nerve cells called "growth factors". By introducing these factors into injury sites alone or in combination with grafts, researchers hope to stimulate additional nerve regeneration and promote the health of nerve cells. This approach has been shown to stimulate CNS regeneration, including growth of axons from nerve cells within the spinal cord and those from the brain that send their long axons down the spinal cord. Significant restoration of function has not yet been achieved.

Another technique is to genetically alter cells so that they produce large amounts of growth factors and to introduce these into the injury site. While nerve fibers have been stimulated to grow by such grafts, this type of research is in its very early stages. Cells making many types of factors will have to be tested and functional recovery carefully demonstrated.

Remyelination of Axons
Schwann cells are also the cells in peripheral nerves that form myelin sheaths. They are not usually found in the brain or spinal cord where another neuroglial cell, the ogliodendrocyte, is responsible for making myelin. Researchers have shown that Schwann cells grafted into the brain can myelinate central axons. When the loss of myelin is an important part of injury, implanting Schwann cells could stimulate remyelination and thereby restore function.

Another approach involves a drug called 4-aminopyridine (4-AP), which may help demyelinated nerves conduct signals. Animal studies show that a very small percent of healthy, myelinated axons can be enough to carry on important functions in the spinal cord, even in the face of damage to surrounding nerve cells. Helping nerve fibers that have lost myelin to conduct impulses should improve function after injuries that extensively damage myelin sheaths but do not disrupt nerve connections. This research is also in its very early phases.

Summary of Basic Science Research
As you can see by the facts detailed above, the problem of CNS response to injury is incredibly complex. No one theory or approach will overcome all of the effects of SCI, and many scientists now believe that the "cure" will not be found in a single approach, but rather in a combination of techniques. Consequently, it is important for all possible research areas to be addressed so our overall knowledge about how the system works may eventually lead to a cure for SCI.

What about the "imminent breakthroughs" you hear about regularly in the press? It must be remembered that there is a vast difference between a "scientific breakthrough" and a "clinical breakthrough". While scientific discoveries occur quite frequently, clinical (treatment) ones do not. Public announcements of scientific progress help to keep the attention and funding focused on finding solutions to the problems caused by SCI but new scientific breakthroughs generally do not lead to immediate treatment applications.

RESEARCH IN SCI TREATMENT

Drug Treatments For New Injuries
NOTE: It is important to realize these drugs are not a cure for chronic (long-term) spinal cord injuries. It is heart-ening to note, however, that treatments finally are available to lessen the severity of some acute injuries.

Research has shown that all damage in SCI does not occur instantaneously. Mechanical disruption of nerves and nerve fibers occurs at the time of injury. Within 30 minutes, hemorrhaging is observed in the damaged area of the spinal cord and this may expand over the next few hours. By several hours, inflammatory cells enter the area of spinal cord injury and their secretions cause chemical changes that can further damage nervous tissue. Cellular content of nerve cells killed by the injury contribute to this harmful chemical environment. This process may go on for days or even weeks.

Hope lies, therefore, in treatments that could prevent these stages of progressive damage. Drugs that protect nerve cells following injury are now available to lessen the severity of some injuries. Other drugs and combinations of drugs are currently being tested in both animal and clinical trials.

Methylprednisolone
Few treatment approaches have raised as much hope as the announcement by the National Institute of Health that the steroid, methylprednisolone, reduces the degree of paralysis if administered shortly after spinal cord injury.

In clinical trials, an extremely high dosage of methylprednisolone was used in a double-blind study (neither patients nor doctors knew who was getting the exper-i-mental drug). The improvement in some patients was so remark-able that the National Institutes of Health felt it was important to "break the code" (i.e., determine who was getting the drug and who was not) so more patients could potentially be helped.

Overall, the trial showed that while the methylprednisolone treated group retained significantly more function than the placebo group, subjects in both groups experienced chronic loss of function due to their injuries.

Methylprednisolone is effective only if used in high doses within eight hours of acute injury. It is hypothesized that this drug reduces damage caused by the inflammation of the injured spinal cord and the bursting open of the damaged cells. The contents of the damaged cells are believed to adversely affect adjacent cells. High doses of methylprednisolone can lead to side effects, such as suppression of the immune system, but no serious problems have been reported when it is used over a short term as in this study.

Because the success of the methylprednisolone trial had changed the "standard of care" in the United States, subsequent drug trials are now testing the effectiveness of other drugs in combination with methylprednisolone administration. Thus, to demonstrate significant effectiveness, new treatments will have to surpass the functional sparing effects seen with methylprednisolone alone.

Simultaneously, researchers are cooperating to conduct a large multi-center animal study to test the effect of other drugs with or without methylprednisolone.

Tirilizade
Similar positive results to those of methylprednisolone have been achieved in animal studies using another steroid, tirilizade mesylate (Freedox®). This drug, which acts like methylprednisolone, also appears to be effective only if administered within a few hours after injury. From initial animal studies, it appears that this drug may cause less side effects than methylprednisolone. Clinical trials are ongoing.

A large clinical trial with humans is currently underway comparing 48 hour treatment of methylprednisolone with or without added tirilizade. Study results are anticipated to be available in late 1995.

GM-1 Ganglioside
Once again, the announcement of a new treatment approach has raised interest and hope in the SCI community. In a small study, the experimental drug Sygen®, or GM-1 Ganglioside, was given within 72 hours of injury and then continued for up to 32 days. Neurological assessments were conducted up to one year after the treatment. Individuals who received Sygen®showed significantly more functional recovery than those who received a placebo.

Currently, a large scale multi-center clinical trial of GM-1 is ongoing with a targeted completion date of 1996-1997. In the current study, all patients receive the "standard" does of methylprednisolone. In earlier studies, a standard dose of methylprednisolone was not given.

There are two theories about how GM-1 Ganglioside may act on spinal cord tissue. The first is that it performs some type of damage control by reducing the toxicity of amino acids released after spinal cord tissue is injured. The "excitatory" amino acids cause cells to die and increase the damage caused by the initial injury. The second theory suggests there may be a neurotrophic effect, somehow encouraging the growth of injured neurons. Neither of these theories have been scientifically proven yet.

Sygen®has not yet been approved for clinical use in this country by the Food and Drug Administration (FDA). It has only been used in a limited number of experiments. Sygen®was provided recently to injured football player Dennis Byrd and approximately 65 other patients through an open-label protocol. Although this protocol is no longer in effect, the large double-blind, multi-center trial in acute SCI mentioned above is well underway.

Surgery
Clinical studies are being conducted by surgeons to determine the optimum time for surgery to relieve pressure on the spinal cord after spinal cord injury. Additionally, the use of delayed decompressive surgery is being investigated in cases of chronic SCI.

Preventing new injuries during spinal surgery
Intraoperative monitoring techniques have been developed to protect healthy nerve roots during spinal stabilization procedures. Scientists tested, first on animals then on humans, a technique that assists surgeons in the placement of metallic hardware for stabilization of the spine. The technique which utilizes nerve stimulation and muscle responses has been shown to effectively predict and allow the prevention of nerve damage during surgery in the lumbosacral spinal column.

TREATMENTS FOR CHRONIC SPINAL CORD INJURY AND ITS COMPLICATIONS

Functional Electrical Stimulation
FES uses implanted or external electrodes to stimulate paralyzed nerves so that arms and legs can be used for improved function. Over the past decade, three primary applications for FES have been developed: FES for exercise; FES for upper extremity (hand/arm) function; and FES for lower extremity (leg function.) FES is discussed in detail in Fact Sheet No. 9, Functional Electrical Stimulation: Clinical Applications.

Omentum Transposition
One controversial treatment for SCI is Omentum Transposition. The omentum is a band of tissue in the abdomen of mammals which provides circulation to the intestines.

A surgical procedure is used to partially detach the omentum, tunnel it under the skin and suture it in place at the injury site. The omentum tissue, which is rich in blood vessels, may supply the damaged nerve cells with vital oxygen. It is believed that the omentum tissue may also secrete chemicals that stimulate nerve growth, as well as have the ability to soak up fluids to reduce pressure which can damage nerve cells.
Initial animal trials seem to show some functional improvement if the operation is completed within 3 hours of injury. Little or no improvement is shown when the procedure is done 6-8 hours post injury. This research, however, has never been scientifically documented.

The on-going clinical trial for people who have had a SCI for months or years has recently been cancelled. Many scientists believe it is premature for human trials, since the results of the earlier research have not been sufficiently documented.

Biomedical engineering
Scientists in the field of biomedical engineering developed mechanical devices that use today's computer technology to assist individuals in activities of daily life. Examples of the types of devices under research and development are environmental control devices, electronic had grip device, and walking devices.

Spasticity/Pain
The complications of spasticity and pain are common in spinal cord injury. Spasticity that is severe enough to cause problems with mobility and self care, that contributes to skin breakdown, and that causes pain is reported in a number of cases of SCI.

Studies in the treatment of spasticity are investigating pharmacological agents, intrathecal baclofen, and spinal cord stimulation. In addition to drugs that have been available for some time (baclofen, valium, dantrium) the use of tizanidine has recently been explored. FDA approval of tizanidine is expected in late 1995.

The problem of pain occurs in approximately 50% of all cases of SCI. Five to thirty percent characterize the pain as disabling. Pharmacologic agents as well as surgical interventions such as the DREZ (dorsal root entry zone) procedure, cordotomy and cordectomy are under investigation for the treatment of severe causes of pain from SCI.

Male Fertility
In most SCI men, the ability to have an ejaculation and to father a child naturally is diminished. In fact, ten years ago, doctors were telling newly injured SCI men that they would not be able to father their own children. With advances made in procedures to assist men in obtaining an ejaculation as well as advances in assistive reproduction technology, SCI men now have the potential to become biological fathers. Vibratory stimulation and electroejaculation are procedures that have been investigated and are currently available to assist men in obtaining ejaculations.

Obtaining the ejaculation is only part of the fertility problem in SCI men, however, the semen from SCI men most often contains a lower than normal percent of motile sperm. Questions that researchers hope to be able to answer with investigations on the quality of sperm of SCI men are: what happens to semen quality following SCI? and how successful is artificial insemination and other reproductive technology using semen from SCI men?

Technology and research are making it possible for spinal cord injured men to consider options regarding their fertility and is providing a more encouraging answer to the question, "Will I be able to have children?" Additional Information is available in Fact Sheet #10: Male Reproductive Function after Spinal Cord Injury.

Alternative Therapies
Various controversial treatments for SCI have come and gone over the years, but none have proved to be effective in reversing the damage to the spinal cord that occurs in spinal cord injury. Often alternative therapies are very difficult to evaluate because of the unscientific nature in which the treatments are introduced to the human population. Many alternative therapies have no documented scientific evidence to substantiate their effectiveness. Currently, examples of treatments that fall into this category are the use of Sygen (GM-1) in chronic injuries and omentum transposition.

Summary of Treatment Research
Over the last several years there has been progress in the treatment of acute SCI to limit damage and preserve function. Treatment of chronic SCI presents a greater challenge, as damage that has already occurred must be corrected and then reversed.

It is entirely possible that, given appropriate financial support, many of the complex problems of SCI one day will be solved. Until that day arrives, it is import-ant to urge the federal government to provide broad-based support for basic science research so the fundamental questions about how and why the CNS acts the way it does can be answered. A cure or new treatments are possible only if scientists receive the support necessary to con-tinue their work in this important area.

The Importance of Basic Science in Spinal Cord Injury Research

Introduction
The ultimate dream for many people with a spinal cord injury (SCI) - or for those who care about someone with SCI - is that a cure will be found as quickly as possible. Every few months a newspaper, magazine, or television show seems to re-port a new "breakthrough" for people with SCI, yet those optimistic reports never seem to be followed by stories of people "cured" of SCI. If these scientific "breakthroughs" are occurring, then why is SCI still incurable? Why don't these "breakthroughs" lead to actual improvements in the conditions of those whom we know have a SCI?

The purpose of this information sheet is to analyze why scientific findings often called "breakthroughs" are of importance to people with SCI and to understand how the term "breakthrough" can be mis-used. Although an important finding at the basic science level will not lead to an immediate remedy for SCI, progress in basic science is essential to the ultimate goal of finding a cure for SCI.

Spinal Cord Injury - The Problem
When spinal cord damage occurs, its most obvious effect is a loss of sensation or movement below the level of injury. Useful func-tion is eliminated below the site of neural damage. For some rea-son, the body is unable to restore this path of communication, so the consequences are permanent. In contrast, a broken leg will cause some temporary disability, but eventually the bone will mend. Even with other serious injuries, such as burns, new skin may re-grow, although it often is badly scarred.

The peripheral nervous system (PNS) includes all of the nerves in the body except for the brain, spinal cord, eye, and optic nerve and is able to heal itself after an injury. For example, if you have a bad cut on your finger you may temporarily lose some sensation if a nerve has been damaged. However, nerve endings in your finger eventually will grow back and re-establish their appropriate connections, as is the case with nerves in the PNS.

With a SCI though, or damage to other central nervous system (CNS) cells, the loss of function is usually permanent. This has two fundamental causes. When there is a traumatic injury leading to the death of nerve cells, the CNS is unable to grow new cells to replace the damaged ones. Even more important, however, many of the nerve cells that are injured, but not killed, are effectively unable to grow new sprouts that reconnect with other injured (or uninjured) nerve cells on the other side of the damaged zone. Without such a precise form of reconnection, as can occur following PNS injuries, the loss of function becomes permanent.

Clearly, the long term clinical goal of research in SCI is to develop a means of assisting the nerves in the spinal cord to heal, or regenerate. Before this objective can be accomplished, however, there are some fundamental problems to overcome. The most import-ant dilemma is our ignorance of biological processes normally in control of the growth and regeneration of the nervous system. In fact, biologists still know rather little about the crucial regula-tory systems that allow a single fertilized egg cell to grow into an elaborate animal.

To attempt to find a "cure" for SCI before understanding these basic facts is like trying to bake a cake without knowing the in-gredients, the correct amounts of those ingredients, or the tem-per-ature at which they would need to be baked in order to come out with a successful finished product. It is, of course, possible to conduct trial and error experiments with cake ingredients and even-t-ually develop a reasonable facsimile of a cake. However, the spinal cord is many times more complex that this proverbial cake! Moreover, it is not yet known for sure the "ingredients" required, much less the relationship of those ingredients to each other and the cellular environment in which they operate, making trial and error approaches to a cure for SCI unreasonable.

The only way an appropriate "recipe" for spinal cord regeneration can be developed, therefore, is to find the answers to the basic questions about cell formation, interactions between cells and cell death. Once scientists have a fairly good idea about the answers to those questions, it will be possible to begin in earnest the task of finding a way to change the CNS's response to injury to allow for regrowth - or regeneration - of the spinal cord.

Basic Science - Important Questions for Spinal Cord Regeneration
The CNS is composed of the brain, spinal cord, eye and optic nerve. While it was once thought that CNS cells cannot regenerate, it has recently been shown that they can, but do not do so effectively in mammals. In order to understand why nerves do not grow properly under some conditions, it is first important to determine what actually happens when they grow. One important way to look at regeneration, therefore, is to carefully examine the processes of nerve growth and regeneration wherever they are most accessible to our current techniques. Consequently, many scientists study nerve cells in animals that one would not expect to have particular rele-vance to the human spinal cord - such as goldfish, frogs, or even the sea snail, Aplysia.

Despite the obvious differences between species within the animal world, experiments conducted in "simple" animals compared to the more complex animals can provide important answers to basic biolog-ical questions that will be helpful to answering human centered issues as well as questions about those specific species. These simple animal models provide relatively neat and uncluttered envir-on-ments in which to study specific questions. The less complicated a theory is, and the fewer complicating variables there are when studying it, the more likely one is to be able to come up with a definitive result.

The human spinal cord is an incredibly complex organ. Proper spinal cord function is dependent upon an intricate interaction among individual cells, each of which has a specific function and a unique role in the CNS. The best way to study the unique roles of cells and their interactions with other cells is to develop simple animal models that enable one to isolate a particular cell-ular relationship rather than to try to sort out a multitude of relationships at the same time. Once those basic relationships are clearly understood, it will be possible to examine with some degree of understanding the complex environment of several differ-ent processes occurring at the same time.

At the present time, scientists still do not understand clearly how a human spinal cord functions under normal conditions. Thus, one of the most pressing concerns today is to develop definitive answers to questions concerning basic CNS function. A second im-port-ant area to examine is that of cellular response to injury. How does the CNS respond to injury? Again, a good way to address this questions is to look at animal systems that do regenerate CNS cells. If scientists can determine how other animals accomplish what we would like to see in humans, then they can begin applying that knowledge to finding a cure for SCI.

It is important to realize that the goal of basic science research is to answer basic questions about biology. Once the answers to the most basic biological questions are found, then it will be neces-sary to determine how the various systems work together in animals and in humans. Much further down that road of course is the development of experimental treatment approaches to reverse the effects of SCI.

Evaluating "Breakthroughs"
Every once in awhile, a newspaper or magazine article will announce that a particular scientist recently reported findings at a meeting or in a scientific journal that represents a potential "breakthrough" for people with SCI. The implication of the article often is that the results announced by this scientist will make paralysis due to SCI a thing of the past, or at the very least, will speed up the process of finding a cure. How is one to interpret these kinds of reports?

One important factor to keep under consideration is that the process of scientific investigations is a long and complicated one, with many basic questions still unanswered. A "breakthrough" re-gard-ing even one of the most basic biological questions discussed earlier certainly may represent an important step forward in one particular area of understanding, but many equally important funda-mental questions about cell function still remain unanswered. The "breakthrough" in and of itself, therefore, is unlikely to lead to any significant advance in our understanding of the mechanisms that occur as a result of SCI, and certainly will not lead directly to a "cure."

A second factor to keep in mind is that science is not as definitive a discipline as most lay people would like to think. Even though one scientist may propose a particular theory about how the CNS works, and may indeed provide evidence to support that theory, it is extremely difficult to prove without a doubt that one's theory is completely correct. In fact, unproven theories may be presented, other scientists may agree with the interpretation of the data, yet eventually the theory will be proven to be completely incorrect.

In the medical field, for example, the practice of "bleeding" a patient was once used widely by physicians. Because the common belief was that "bleeding" was beneficial, doctors continued with the practice and interpreted the "data" to support the theory that "bleeding" was a good treatment. In other words, the eventual survival of some patients was attributed to good care, including "bleeding," while death was attributed to other factors.

In science, the same kind of thing can happen, but because of the lack of knowledge most of us have about basic science principles, and because of our intense desire to have answers that will lead to clinical advances, we are less aware and less willing to accept the lack of "hard data" to support various theories. Consequently, it is important to realize that a reported "breakthrough" may or may not represent an important step forward, and that time will be the best judge of its value.

Summary
A cure for SCI is clearly needed, and for those who have an injury or know someone with SCI, the amount of time it is taking to develop a cure seems unacceptable. It is easy to see why we want to accept claims of "breakthroughs," and why we are willing to believe promises by scientists or others that a "cure" will be found in five years, or ten years, or some other specified time period. With the amount of knowledge currently available about spinal cord function and dysfunction, however, it is impossible to predict when or even if a cure will be found.

As much as we would like to see an immediate cure for SCI, "shortcut solutions" are unlikely to produce one. The key to finding an eventual cure is in supporting basic research efforts slowly developing the answers to the most fundamental questions in biology. Only when those questions are answered will it be pos-sible to develop approaches toward curing SCI and other unaccept-able medical conditions.
 

Tendon Transfer Surgery to Restore Hand Function in Persons with Quadriplegia

Introduction
Hand surgery can play a very important role in the rehabilitation of selected individuals with paralysis following spinal cord injury. When the spinal cord is injured as a result of a fracture or dislocation in the neck, or as a result of direct injury to the spinal cord from a bullet, knife, tumor or other disorder there is a profound disturbance of function at the level of injury and a loss of voluntary control of all muscles and sensory function that occur below that level. Individuals with these injuries are often referred to as persons with quadriplegia or tetraplegia because all four limbs have at least some degree of paralysis.

Anatomy 101
The upper limbs are supplied by nerves originating in the spinal cord from the fifth cervical vertebra to the first thoracic vertebra designated as C5, C6, C7, C8, and T1 (see diagram). There are over thirty-five muscles involved in controlling voluntary movements in the forearm, wrist and hand which receive their nerve supply from C6, C7, C8, and T1. Since the most common area of injury to the cervical spinal cord results in paralysis below C6, these persons usually have only two to five of their arm muscles that are not paralyzed.

Tendons are strong cords that connect muscles to bones and transmit muscle action into movement of the joints where they cross. The important muscles that move the wrist and fingers are located in the forearm and their tendons are attached to bones in the hand. In tendon transfer surgery the tendon of muscle that is not paralyzed is transferred to the tendon or tendons of paralyzed muscles so that the transferred muscle will be able to replace the important action that was lost. When a tendon is transferred, its former action will be weakened so it is essential to select the proper muscles for transfer. It is of greatest importance to maintain wrist extension so one strong muscle must be retained for that purpose. Many individuals at the C6 level will be able to maintain wrist control and have one or more other muscles that can be transferred to provide another action, such as pinching, with the thumb.
 

Spinal Cord Injury Awareness - Understanding the Importance of Language and Images

Introduction
Every day more than 30 people become paralyzed from spinal cord injury (SCI) or disease. SCI generally results in one of two types of paralysis:

The majority of people with SCI use wheelchairs for mobility. Thus, they encounter many obstacles and barriers in everyday life. Among the most difficult barriers are those involving the public's misperceptions and attitudes.

The Power of Language
Language is a very powerful tool. It can be used not only to communicate ideas, but also to change and shape attitudes. People with all types of disabilities are striving for equality, community accessibility, and acceptance. Yet, they are constantly confronted by language which perpetuates negative stereotypes of who they are and what they are capable of doing.

Using positive language that values and affirms people with disabilities is a first step in helping to change societal attitudes. When a term such as "victim" or "invalid" is used to describe a person who uses a wheelchair, the listener or reader immediately views the person as an object, not as a human being. The image that comes to mind is a negative one, focused not on the person, but on the disability. These terms do not allow or encourage the reader or listener to see any of the unique aspects of the individual.

When a person sustains a spinal cord injury and is paralyzed, he/she loses the ability to fully use his/her legs and/or arms. He/she does not lose the ability to think, feel, learn, love, work, or to live life to its fullest. There is life after spinal cord injury! NSCIA is dedicated to helping people adapt to their injury and to live a full and independent life.

It is important to know the appropriate and acceptable terminology to use when writing or speaking about people with SCI. Using proper language is more than just being "politically correct." It helps portray people who use wheelchairs more accurately, raises public awareness about SCI, and helps break down attitudinal barriers and negative stereotypes.
 

Functional Electrical Stimulation in Spinal Cord Injury

What is FES? How can FES help me? Will FES help me walk again? These are just a few of the questions that are frequently asked by our Hotline callers.

The term Functional Electrical Stimulation (FES) can be applied to a wide variety of research and treatment approaches. This Fact Sheet describes the various kinds of FES systems being used and researched today. It is intended to educate our constituents about available FES rehabilitation treatments that might prove beneficial in improving physical function after a SCI.
 

What is a Physiatrist?

Many people are unaware that there is a special branch of medicine specifically dedicated to the diagnosis and treatment of physical disability. Physiatrists are doctors who are certified as specialists in rehabilitation medicine by the American Board of Physical Medicine and Rehabilitation. The area of medicine they practice is called "physiatry."

Physical Medicine and Rehabilitation (PM&R) was born in 1946 in response to the challenge to help disabled citizens reach their maximum potential. What is so special about these specialists? After completing medical school and obtaining an MD or DO degree, they study four more years and take two extra examinations, one written and one oral. The purpose of this extra training is to make sure that physiatrists are focused on the patient as a whole person. Most physicians deal with illness and possible threats to life. The physiatrist deals with functional loss and threats to living fully -- the physical and psychological disabilities remaining after initial medical or surgical treatment.

The physiatrist often coordinates a team of other doctors and health professionals in developing and carrying out a comprehensive rehabilitation plan which extends beyond hospital walls into the patient's family, community, occupation, friends, and ultimate life style. This rehabilitation team may include physical, occupational, and/or speech therapies, nurses and doctors from various specialties, including neurology and orthopedics, psychologists, counselors or social workers, rehabilitation engineers and others.

The physiatrist's success comes through a team effort where the patient is an integral part of the team process. Each improvement in function, however subtle, can significantly improve the life of a patient.
 

What is Autonomic Dysreflexia?

Autonomic Dysreflexia (AD), also known as Hyperreflexia, is a potentially dangerous complication of spinal cord injury (SCI). In AD, an individual's blood pressure may rise to dangerous levels and if not treated can lead to stroke and possibly death. Individuals with SCI at the T-6 level or above are at greater risk. AD usually occurs because of a noxious (irritating) stimulus below the level of the injury. Symptoms include headache, facial flush, perspiration, and a stuffy nose.

AD occurs primarily because of an imbalance in the body systems which control the blood pressure. The human body is an incredibly complicated and beautifully balanced machine. There are balances to each system of the body, including the blood pressure. One of the major ways the body controls blood pressure is by tightening or relaxing little muscles around the blood vessels. When the muscles contract, the blood vessels get smaller and blood pressure increases. Imagine a garden hose with water streaming through it; when you put your thumb over the opening of the hose, reducing the opening for the water to flow through, the water shoots out at a higher pressure. Similarly, when the blood vessels are smaller, the blood rushes around your body at higher pressure.

When a noxious stimulus occurs, a reflex is initiated that causes the blood vessels to constrict and raises the blood pressure. In an intact spinal cord, this same stimulus also sets in motion another set of reflexes that moderates the constriction of blood vessels. However, in someone who has SCI at the T-6 level or above, the signal which tells the blood vessels to relax cannot get through the spinal cord because of the injury. Some of the nerves at the T-6 level also control the blood flow to and from the gut, which is a large reservoir of blood. Uncontrolled activity of these nerves may cause the blood from the gut to flow into the rest of the blood system. The result is that blood pressure can increase to dangerous levels and the increase in blood pressure must be controlled by outside means.
 

Starting a support group or a discussion group

We frequently receive calls for information on local support groups. Although there are thousands of people with all over the US, there are not always support groups for those that want them. Support groups provide a valuable service not only for counseling and support, but also for socializing and information sharing. "Old timers" have information to share with newer injuries, and groups have more influence with vendors or medical professionals to present information and products. If there is not a support group in the area, people frequently ask how they can start one in their area. The process of beginning a support group can initially seem daunting, however, it is easier if we break it into little pieces -- what I call the five P's:

  1. People
  2. Planning
  3. Place
  4. Publicity
  5. Programming

Step One - People
After you have decided that you want to start a support group, identify two or three persons who share your interest in starting (not simply joining) a support group. Although it is possible to run a support group by yourself, you it is easier and you reduce the chance of burn-out if you have other people assisting you. If one of the people assisting you has a computer, that is an additional benefit, as they may be willing to maintain the mailing list, make flyers and print minutes and notices.

You also need to have an idea of how many people want a support group. Is there a group who have expressed an interest in meeting for support? Is there a concentration of people with SCI in one area? A feel for the demographics will affect not only who you have in the group, but where you meet and even what will be the group's emphasis.

Who can Attend You have to decide who can attend the meetings. Do you want the group to be only for people with SCI and spinal dysfunction, or can individuals with other disabilities attend. Another very important decision is whether you want the meeting to be only for people with disabilities, or also for family members and friends. Many times, people with disabilities will want a place where they can talk about their own issues without family around. Of course, family members have their own issues and they may want to speak about them without the person with a disability around. Possible solutions are to have 2 separate meetings, one for individuals with SCI, and one for family members. Another solution is to open the meeting to family members every 3 months. Of course, another option is not to include family members at all in the beginning phases of the support group.

Step Two - Planning
You will need to decide quite a number of things before the first meeting of your group, such as the frequency, location and emphasis of the group.

Decide how often your group will meet (NSCIA support groups must meet at least once a month.) If your group meets less often than once a month, it runs the risk of losing momentum and focus; interest may die out in the long weeks before the next meeting. Some groups may have the interest to meet more than once a month. If so, feel free to go with the interest, but don't feel that every two weeks is the norm. Many starting groups only meet once a month and are quite successful.

Decide how you will get the word out. Most people will have a list of people who would be interested in a SCI support or discussion group. A local rehab hospital may be willing to make a mailing to former SCI patients for you to advertise the meeting, but don't expect them to turn their list over to you. Many times a local hospital may also assist with mail and photocopying costs. Other places to advertise and solicit names are your local Independent Living Center (ILC), and with medical supply retailers. Don't overlook Vocational Rehabilitation. Remember, VR counselors are always seeing people with various disabilities, and are usually looking for ways to educate and train their clients. Don't forget to advertise in the local newspaper; most papers have a free section to advertise meeting notices.

What Kind of Group? There are many kind of support groups. Each has its own style, and each speaks to people in a different ways. You and the other people who are interested in starting a Support Group probably already have the type of support group you want in mind. Major types of support groups are as follows:

Peer Support groups. Groups led by others with similar disabilities. Usually these groups are not led by a professional like a social worker or rehab psychologist or counselor. A reasonable compromise might be a psychologist or counselor with a disability.

A professionally led support group. These groups are led or advised by a professional like a rehab psychologist, social worker or rehab counselor.

A discussion group. Not necessarily a support group, but a group with an educational emphasis to them. These groups may have a video or a speaker or topic each meeting. These groups may also provide a time where individuals can discuss issues of interest and concern to them to see if others have suggestions or have experienced a similar situation.

Step Three - Place
Decide on a central location. In many areas transportation is a major problem. A rehab hospital can provide a good location, as many people already know where it is, and you will have access to large meeting rooms as well as professionals interested in SCI. Some people may not feel comfortable meeting in a medical facility for personal reasons, so polling a few people about the location is wise. A private residence with a large room, or a clubhouse makes a good alternative, as are church halls, Independent Living Centers, etc. The location should, of course be accessible, with plenty of parking and accessible via wheelchair accessible transportation if possible. Don't forget to make sure the bathrooms are accessible.

Some people may be tempted to have a rotating meeting place to make the meeting more accessible to people with transportation problems. This has benefits and potential problems. A benefit is that some people will have at least a few meetings in their area. This can increase the total number of people attending throughout the year. A potential problem is that the group becomes fragmented because only certain people attend certain meetings. Also, unless the meeting locations are well publicized in advance, people may forget where the meeting is and decide not to attend. With the same location, people always know where to go.

Step four - Publicity
Publicity is crucial to a beginning support group. It is important to leverage all available media (especially free outlets). For example:

Make up a flier announcing the meeting. You're not writing the great american nover here, sojust give people the basics - date, location, time, and a brief description of the purpose of the group. Remember, if you're putting the flyer up in a public place you may have only 2-3 seconds toget a passerby's attention, so use large type and few words. Distribute the flyer to all the people on the mailing list. Try to make a personal visit to organizations like ILCs and hospitals so that you post the flyer yourself. If not, then print "Please Post" somewhere on the flyer. Again, ask Rehab Hospitals, ILCs, and other organizaiions and businesses to do a mailing for you.

Step five - Programming
So what will you do in your meetings? If your meeting is strictly a support group meeting, you will want to go around and check in with everyone and then begin the meeting using whatever model you choose. If your meetings will have an eduational component to them, then planning the meetings will require additional effort. Topics for meetings include sports and recreation (vendors are a good source of information on the latest equipment), jobs and housing (ask a local ILC and/or your Voc. Rehab. department for a speaker), ADA training, etc. Your local rehab hospital is also an excellent resource for medical information, if members express a desire for that. Ask participants what they would like to hear about. The attendees are an excellent resource for information, each of us has special skills and insights on certain topics that others may be interested in. There are also books, videos and movies dealing with disability, as well as mainstream materials that discuss or portray disabilities that can make good topics or jumping off points for discussion on disability. Fanlight Productions is an excellent (though pricey) source for specialty videos on disability. You can reach Fanlight at (800) 937-4113. Another activity that most people enjoy and which can generate enthusiasm in a group is to begin a peer visitation program or perform preventation and education programs at schools. We will cover these issues in a later issue.

Plan a time for people to just hangout either before or after the meeting, and make sure that people don't leave without signing up with their address and telephone number. Not only does this keep your mailing list up to date, but it also allows your support group to grow.

Running a meeting is learned skill, so don't feel discouraged if you're not perfect at it. It helps to have someone available who has done this before, so ask around.

This is not a comprehensive list of what to do, and running a support group is not easy, but it is a very rewarding and important service to the community. If you want additional information, feel free to call NSCIA. If your support wants additional information on becoming a part of the NSCIA Support Group Network, call and ask for the Support Group info packet.