FLORIDA SPINAL CORD INJURY RESOURCE CENTER

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1 FLORIDA SPINAL CORD INJURY RESOURCE CENTER Located at the Tampa General Rehabilitation Center Davis Island P.O. Box 1289 Room R212A Tampa, FL Statewide Toll Free: Local Phone: FAX: Web Site:

2 Patient s Bill of Rights The American Hospital Association s Committee on Health Care prepared the following definition of a patient s rights and distributed it to member hospitals across the nation. By knowing and exercising these rights, patients and their families are offered more control during the hospitalization stage. Each patient has the right to: 1. Considerate and respectful care: 2. Obtain from physicians complete and current information concerning his or her diagnosis, treatment and prognosis in terms the patient can be reasonably expected to understand; 3. Receive from the physician information necessary to give informed consent prior to the start of any procedure and/or treatment; 4. Refuse treatment to the extent permitted by law; and be informed of the medical consequences of any action; 5. Every consideration of his or her privacy concerning his/her own medical care program; 6. Expect that all communications and records pertaining to care should be treated as confidential; 7. Expect that within its capacity a hospital must make reasonable response to the request of the patient for services; 8. Obtain information as to any relationship of the hospital to other health care and educational institutions insofar as his/her care is concerned; 9. Be advised if the hospital proposes to engage in or perform human experimentation affecting care or treatment; 10. Expect reasonable continuity of care; 11. Examine and receive an explanation of the bill regardless of source of payment; 12. Know what hospital rules and regulations apply to patient care.

3 The Florida Spinal Cord Injury Resource Center s A Family and Survivor s Guide to Spinal Cord Injury The Florida Spinal Cord Injury Resource Center is sponsored through a grant with the Florida Department of Health, Brain and Spinal Cord Injury Program. The contract is administrated by The Florida Alliance for Assistive Services and Technology. Florida Spinal Cord Injury Resource Center 1

4 WHAT IS SPINAL CORD INJURY? How the Human Spinal Cord Works The human spinal cord operates much like a telephone line, relaying messages from the brain to the rest of the body. Causes of Spinal Cord Injury Spinal cord injuries are caused by bruising, crushing, or tearing of the delicate cord tissue. Swelling of the spinal cord after the injury can cause even more damage. Illustration 1: Normal Function of the Spinal Cord The Impact of Spinal Cord Injuries After an injury, the messages sent between the brain and the other parts of the body no longer flow through the damaged area. Many times the functions of the body which are located above the injury point will continue to work properly without impairment. However, the area below the injury point will be impaired to some degree, which will include any combination of the following: motor deficit, sensory deficit, initial breathing difficulty, and/or bowel and bladder dysfunction. Illustration 2: Spinal Cord Function After Injury Accepted Truths About Spinal Cord Injuries to the spinal cord are irreversible. No two spinal cord injuries are exactly alike. The higher the level of injury to the spinal cord, the greater the disability. Whatever the level of injury, it is important for the spinal cord injury survivor to work with his or her doctors, nurses, and therapists to maximize the functions that remain. Complete vs. Incomplete Spinal cord injuries are classified as complete or incomplete. When an injury is called complete, it means the feeling and control of movement below the point of injury are totally lost. In an incomplete injury, there may be some feeling and control of movement below the point of injury. In some cases, the functions that are missing in the earliest stages of the injury may return when the body stabilizes. 2 A Family and Survivor s Guide to Spinal Cord Injury

5 LEVELS OF FUNCTION Letters and numbers are used to identify the specific area of the spinal cord that is involved in the injury. For example, an injury at C-4 means the injury occurred at the fourth vertebrae in the cervical region. There are four sections of the spine the Cervical, Thoracic, Lumbar, and Sacral. Spinal cord injuries that result in quadriplegia and paraplegia are located in the top three sections. A loss of function is associated with each level of injury. The higher the point of injury the more function is lost. C Level Function C-1 to C-3: Limited movement of head and neck; dependent on ventilator; difficulty talking. C-3 to C-4: Usually has head and neck control and the ability to shrug shoulders; usually adjusts to breathing without ventilator; able to talk. C-5: Typically has head and neck control; full shoulder control; can bend elbows; turn palms face up; can eat, drink, wash face, brush teeth, and shave by him/herself; can manage own healthcare; may push own wheelchair; Illustration 3: Levels of the Spine driving may be possible. C-6: Movement in head, neck, shoulders, arms, and wrists; can shrug shoulders, bend elbows, turn palms up and down and extend wrists; manage hygiene needs; perform light housekeeping duties; can manage and perform own healthcare; turn in bed; can transfer from chair to other surface with help from adaptive aids; can use a manual wheelchair. C-7: Similar abilities as C-6 level with greater ease; added ability to straighten elbows; needs fewer adaptive aids to perform all functions. Florida Spinal Cord Injury Resource Center 3

6 T-Level Function C-8 to T-1: Added strength and precision of fingers that result in near natural function; can live independently without assistive devices for hygiene needs and personal health care; can transfer from wheelchair to other surface without the use of adaptive aids. T-2 to T-6: Normal function in head, neck, shoulders, arms, hands, and fingers; increased use of rib and chest muscles; totally independent with all activities; few may have limited walking capability. T-7 to T-12: Similar to T-2 to T-6 function with added function and control; has improved cough effectiveness. L-Level Function L-1 to L-5: Additional return of motor movement in the hips and knees; walking can be a viable function with assistive devices. Wheelchair Basketball: Levels T-7 and below Power Soccer: Any Electric Chair Users Quad Rugby: Levels C-5 to C-7 Illustration 4: Sports at Different Injury and Functional Levels 4 A Family and Survivor s Guide to Spinal Cord Injury

7 THE TEAM APPROACH TO TREATING SPINAL CORD INJURY Most hospitals and rehabilitation centers use a team approach in the care of spinal cord injury survivors. Each member for the team has a specific and important job. Members of the treatment team should meet with the family regularly, as they are the family s main resource for information and assistance. Don t be afraid to approach them with your concerns. Illustration 5: Medical Team Involved in Spinal Cord Injury Treatment Questions to Ask This Team Am I being turned enough, so I don t develop a pressure sore? Are my feelings toward this injury normal? How will my diet need to be adjusted with this injury? How will my sexuality be impacted by this injury? Florida Spinal Cord Injury Resource Center 5

8 Supportive Staff Illustration 6: Supportive Staff Involved in Spinal Cord Injury Treatment Question to Ask This Team How will my home need to be modified for wheelchair use? What financial benefits are appropriate for me? What goals should I be setting? Who in the community can help me maintain a high quality of life? Where can I get additional information about spinal cord injury? What kind of jobs can I get now? 6 A Family and Survivor s Guide to Spinal Cord Injury

9 Therapists Illustration 7: Therapists Often Involved in Spinal Cord Injury Treatment Questions to Ask This Team What are the primary respiratory problems associated with a spinal cord injury at my level? Is there an outlet for my competitive nature? How will I brush my teeth, reach the stove, get to my second floor apartment? How do I get from my chair into the bath tub with or without someone else s help? What wheelchair will work best for me? What is the best cushion? Why is washing my own clothes so important? How do I perform a pressure relief? Florida Spinal Cord Injury Resource Center 7

10 STAGES OF SPINAL CORD INJURY MEDICAL CARE The medical treatment of spinal cord injury is divided into two phases acute and rehabilitation. The acute phase begins with the arrival of the emergency medical services team at the accident scene and continues with admission into the hospital. The rehabilitation phase begins when the survivor is deemed medically ready to strive for his or her independence. The Acute Phase During the first few days after a spinal cord injury, doctors will try to prevent further damage to the spinal cord. Such damage can be caused by swelling in the spinal cord region. These first days of the acute phase are often characterized by a condition called spinal shock. Until this period is over, it is difficult to predict how severely the survivor will be impaired because some recovery of function may occur. Also, complications beyond the cord injury may be present, and these complications may slow down the time of prediction. For example, most spinal cord injuries result from car accidents. Therefore, it s common that a person who has sustained a spinal cord injury has also sustained other broken bones, bruising, or even a brain injury. A family has little say immediately after the injury when deciding which acute center to transport their loved one because timing is very important. Often the faster the person can get treatment, the better his or her chances are of having less impairment. All spinal cord injured people are sent to the closest Brain and Spinal Cord Injury Program designated acute care hospital. These medical centers are the most prepared to handle such a delicate injury. Spinal shock occurs when a person s reflexes stop functioning. BSCIP Accreditation for Acute Care Facilities This accreditation provides acute care and inpatient and outpatient rehabilitation care, as well as other services. For a facility to become a Brain and Spinal Cord Injury Program facility, it is required to maintain the highest level of expertise and experience to address the medical, rehabilitation, and physiological needs of individuals who sustain traumatic brain and spinal cord injuries. A minimum number of new admissions is required to maintain the expertise of professional staff and level of comprehensive program required. Brain and Spinal Cord Injury Program State Designated Acute Care Hospitals Currently, there are 10 BSCIP state designated acute care facilities in Florida. All of these facilities are also CARF accredited. Baptist Hospital 1000 West Moreno Street / Pensacola, FL / Phone: Web site: 8 A Family and Survivor s Guide to Spinal Cord Injury

11 Halifax Medical Center 303 North Clyde Morris Boulevard / Daytona Beach, FL / Phone: Web site: Jackson Memorial Hospital 1611 Northwest 12 th Avenue / Miami, FL / Phone: Web site: Memorial Regional Hospital 3501 Johnson Street / Hollywood, FL / Phone: Web site: Shands Hospital at the University of Florida Box JHMHC / Gainesville, FL / Phone: / Toll-Free: Web site: Shands Jacksonville 655 West 8 th Street / Jacksonville, FL / Phone: / Toll-Free: Web site: St. Mary's Medical Center th Street / West Palm Beach, FL / Phone: Web site: Tallahassee Memorial Healthcare 1300 Miccosukee Road / Tallahassee, FL / Phone: Web site: Tampa General Hospital Mailing Address: P.O. Box 1289 / Tampa, FL Physical Address: 2 Columbia Drive / Tampa, FL Phone: / Web site: West Florida Regional Medical Center 8383 North Davis Highway / Pensacola, FL / Phone: Web site: The Rehabilitation Phase The rehabilitation phase helps a survivor achieve the greatest degree of function and independence in his or her home and community by having a plan designed according to his or her unique needs. Ideally, rehabilitation will take place in a designated spinal cord injury treatment center which has been approved and accredited by both the Florida Brain and Spinal Cord Injury Program and the Commission on Accreditation of Rehabilitation Facilities. Florida Spinal Cord Injury Resource Center 9

12 Illustration 8: CARF and BSCIP Logos Rehabilitation Keys to Success If a survivor masters this list, he or she will be better prepared to meet the functional goals set during the rehabilitation process. Understand the effects of spinal cord injury and the details of your care Become as independent as possible in the activities of daily living, like bathing, grooming, eating, and transferring from wheelchair to another surface. Learn and accept lifestyle, recreational, sexual, and housing options Be able to instruct care givers to assist in activities of daily living, if unable to do them yourself Be prepared to begin vocational rehabilitation soon after leaving the rehabilitation facility. The successful rehabilitation of any person who survives a spinal cord injury depends upon the strength of the rehabilitation team and the motivation of the survivor. Choosing a Rehabilitation Center That s Right for You The following list is a set of questions you could ask that may help you decide on the right rehabilitation center for you and your loved one. Is the SCI program accredited by the Commission on the Accreditation of Rehabilitation Facilities (CARF), the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), and (in Florida) the Brain and Spinal Cord Injury Program (BSCIP)? Will the treatment team develop a rehabilitation plan with both short and long term goals? Will an experienced case manager be assigned to help family members obtain medical payments and other benefits from public and private insurance? Will a team member be assigned to coordinate treatment and act as a contact for staff and family members? 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? Is there physician coverage seven days a week? Twenty-four hours a day? 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? 10 A Family and Survivor s Guide to Spinal Cord Injury

13 Does the program ensure the availability of rehabilitation nursing and respiratory care on a twenty-four hour basis? 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. 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. Are other specialties such as driver education, rehabilitation engineering, chaplaincy, and therapeutic recreation available, if needed? Are activities planned for SCI program participants on weekends and evenings? 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? 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? 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. Does the facility offer sexuality and fertility counseling? Do facility policies encourage family members including siblings regardless of age, to participate in rehabilitation programs? Will staff members develop a formal discharge plan with program participants and their families? Brain and Spinal Cord Injury Program State Designated Rehabilitation Centers Currently, there are eight BSCIP designated facilities in Florida, and each is also accredited by CARF. Brooks Rehabilitation Hospital 3599 University Boulevard, South / Jacksonville, FL / Phone: Web site: Healthsouth Rehabilitation Hospital of Tallahassee 1675 Riggins Road / Tallahassee, FL / Phone: Web site: Healthsouth Sea Pines Rehabilitation Hospital 101 East Florida Avenue / Melbourne, FL / Phone: Web site: Jackson Memorial Rehabilitation Center 1611 Northwest 12 th Avenue / Miami, FL / Phone: Web site: Pinecrest Rehabilitation Hospital 5360 Linton Boulevard / Delray Beach, FL / Phone: Web site: Florida Spinal Cord Injury Resource Center 11

14 Shands Rehabilitation Hospital 8900 Northwest 39 th Avenue / Gainesville, FL / Phone: Web site: Tampa General Rehabilitation Center Mailing Address: P.O. Box 1289 / Tampa, FL Physical Address: 2 Columbia Drive / Tampa, FL Phone: Web site: West Florida Rehabilitation Institute 8383 North Davis Highway / Pensacola, FL / Phone: Web site: Illustration 9: Scenes from Rehabilitation 12 A Family and Survivor s Guide to Spinal Cord Injury

15 COMPLICATIONS OF SPINAL CORD INJURY It is important all spinal cord injury survivors know how to recognize these complications. Early medical treatment can prevent or minimize the consequences. Bladder Control Bladder control can be limited or completely lacking due to the injury. This means that people with spinal cord injury may not feel the urge to urinate when their bladder is full. What happens is one of two results. First, the person can have a spastic bladder, meaning you don t know when or if the bladder will empty. This is most common when the injury occurs above T-12 level. The other result is called flaccid bladder. This occurs when the injury is below the T-12 level. The bladder muscles become sluggish or don t work at all, and the urine stays in the bladder and stretches its walls. The urine then backs up into the kidneys. Treatments include medications or surgery. Illustration 10: Bladder Diagram The number one most common complication is urinary tract infection (UTI). The source is bacteria. Symptoms include fever, chills, nausea, headache, increased spasms, and autonomic dysreflexia; however, these are also symptoms of other illnesses. It is highly recommended that you call your doctor immediately for advice if you have any of these symptoms. UTIs can be diagnosed with a urine culture. To minimize your chances of getting a UTI, keep your personal care supplies clean, keep your skin clean, completely empty your bladder, drink plenty of fluids (preferably water), use the proper techniques taught to you in rehabilitation, and maintain regular urologic check-ups. The most common bladder management programs involve: Intermittent catheterization A thin, flexible, hollow tube that is inserted through the urethra into the bladder and allows the urine to drain out. Illustration 11: Intermittent Catheterization Florida Spinal Cord Injury Resource Center 13

16 Indwelling catheter A catheter that remains in place continuously. This type of catheter has a balloon on the end that is inflated with sterile water once the end is inside the bladder. The inflated balloon prevents the catheter from slipping out. Illustration 12: Indwelling Catheterization for Males and Females External condom catheter for men A special condom that can be attached to a catheter. The condom keeps the catheter in place and collects urine. Illustration 13: External Condom Catheter for Men Bowel Control After spinal cord injury, control of bowel muscles is lost. Like the bladder, the bowel can be categorized as spastic or flaccid. Also like the bladder, spastic bowels are most common in injuries above the T-12 level, and flaccid bowels are common below the T-12 level of injury. In rehabilitation, you will learn a program of emptying the bowel on a regular basis. In spastic bowels, the management program includes the use of stool softeners to aid in emptying the bowels, and digital stimulation. In flaccid bowels, the management program includes manually emptying the stool. For the best results, schedule a time (the same time) every day to perform your management program, exercise every day, drink plenty of water, and eat a variety of healthy foods, especially foods with fiber. 14 A Family and Survivor s Guide to Spinal Cord Injury

17 Respiratory System Persons with injuries below the T-12 level typically do not have a loss of respiratory function. Injuries above the T-12 level will complicate the breathing process as the level rises toward the brain. According the Spain Rehabilitation Center, and as shown in their diagram below, the diaphragm is normally the main muscles that you use when you inhale. The intercostal muscles help to expand your ribs as you inhale. The neck muscles normally work to expand your upper chest when inhaling. The abdominal muscles work with these other muscle groups to help you breath deeply and cough. Therefore, when you suffer a spinal cord injury and lose muscle control, you lose some breathing capability. Complete injuries above the T-12 level usually result in total loss of respiratory muscle function below the level of injury. This can cause various complications. For example, a complete injury between C-3 and C-5 loses all control of the diaphragm muscles, and a ventilator will be needed to help the person breath. People with injuries above the C-3 will always use a ventilator to help them breathe. Illustration 14: Muscles that Help the Body Breathe The two most widespread complications in spinal cord injury related to respiratory function are pulmonary embolism and pneumonia. Pulmonary embolism is a blockage in the blood vessels of the lungs, and pneumonia is an infection or inflammation of the lungs caused by bacteria, viruses, and other agents. Pulmonary embolism is the number two cause of death for all persons with spinal cord injury within the first five years of the injury. Pneumonia is the number one leading cause of death for all persons with spinal cord injury. These complications can occur in people of all injury levels. Symptoms of pneumonia include shortness of breath, pale skin, and fever, with a feeling of heavy chest and an increase of congestion. Skin System The most common skin complications are pressure sores. They are most often seen over bony body areas like the shoulder blades, buttocks, hips, and heels. Illustration 15: Main Pressure Areas Florida Spinal Cord Injury Resource Center 15

18 Complications from pressure sores include infection, dehydration, anemia, and electrolyte imbalance. They also produce pain, disfigurement, and hospitalization. In extreme cases, the infection involved with a sore can threaten your life. Illustration 16: Pressure Relief Steps You Can Take to Reduce Your Chances of Getting a Pressure Sore 1. Perform regular pressure relief. 2. Use a proper cushion on your wheelchair. 3. Sleep on a mattress. 4. Inspect your skin often for redness, cracks, bruises, and blisters. 5. Keep your skin clean and dry. 6. Wear shoes while in your wheelchair. 7. Do not wear clothing with thick seams. 8. Don t store items under your seat cushion. 9. Perform safe transfers. 10. Maintain correct cushion maintenance. Three common additional symptoms of skin problems are an increase in spasms, unusual sweating, and elevated body temperature. Circulatory System The most common circulatory problem related to spinal cord injury appears in those people injured above T-6. These individuals are prone to rapid increases in blood pressure, a syndrome called autonomic dysreflexia. Autonomic dysreflexia is usually caused by a bowel or bladder that is too full for an extended period of time. Symptoms are high blood pressure, headache, sweating, and skin changes above the injury level. Illustration 17: Autonomic Dysreflexia Card Spinal cord injury survivors who are prone to autonomic dysreflexia should carry medical alert cards that contain instructions regarding treatment. Not all medical personnel are familiar with this complication. 16 A Family and Survivor s Guide to Spinal Cord Injury

19 COMMON QUESTIONS AND ANSWERS FROM FAMILY AND FRIENDS Q: Will our loved one ever walk again? A: The likelihood of walking unaided with a complete injury is small. It will be well into the rehabilitation process before this question can be answered with any real accuracy. Q: How do we respond when our loved one asks us questions about their injury? A: Always be honest and open. Answer all questions with the most accurate information that is available to you. Never promise that your loved one will walk again. Inflating a loved one s hopes with impossible promises can be harmful during a time when they need to set realistic goals for their rehabilitation program. Q: I see movement in my loved one s legs. What does that mean? A: Most often the movement is spasticity. Spasticity, or spasm, is an involuntary movement of the muscles. The family needs to understand that they, too, are grieving a loss the loss of a loved one as he or she had always been. Don t focus on the hope of walking. Focus on the healing of your loved one. Q: Can a survivor of spinal cord injury ever marry and have children? A: Typically, women can have children, and men can resume sexual activities. Both remain capable of being loved and giving love. Illustration 18: SCI Survivors Can Marry and Have Families Q: Are most families as anxious as we are? A: Both the family and their loved one are traumatized by spinal cord injury. Reactions commonly begin with relief that your loved one is alive before moving onto shock. You may feel numb, confused, frightened, and anxious. Such feelings are normal because you are worried about your loved one and uncertain about the future. Q: How will this injury impact my family on the whole? A: Family roles usually change after a loved one survives a spinal cord injury. These changes are stressful, and it is not uncommon for family members to react occasionally in ways that Florida Spinal Cord Injury Resource Center 17

20 other members do not understand. Hold onto your personal and family strength, accept help, and always remember that the family is there to support and love one another. Q: I m not the one who is hurt, but why do I feel like I ve lost so much? A: The way of life you ve known to this point is over. The spinal cord injury has changed that. Both the spinal cord injury survivor and his or her family have to deal with that loss. Although the experience is different, both survivor and family will go through a grieving process. DENIAL: The survivor and family often act as though nothing has happened, as though nothing has changed. They can refuse to accept that this loss is permanent. Many see spinal cord injury as something that will pass with time. SADNESS/DEPRESSION: In all cases, the survivor and family experience a sense of sadness over the experience. However, sometimes people fall into a depression over the injury. Look out for these signs: prolonged, extreme sadness; inactivity; irrational thinking; significant increase or decrease in appetite and sleep patterns; feelings of dejection, hopelessness, and worthlessness; and thoughts of suicide. ANGER: Some people s reaction to the injury is strong displeasure. They show it by lashing out verbally and physically toward others, including their loved ones. Often this anger is coupled with guilt because you feel there was a way you could have prevented the injury. The survivor and family may even feel anger toward God. BARGAINING: During this phase, the survivor and family members have begun to accept the seriousness of the injury; although, they want to hold onto the belief that the injury is not permanent. Many times people believe their prayers will be answered, and they only have to accept the way things are temporarily. ACCEPTANCE: People gain a realistic view of the injury, and they find meaning in life again. They have thoughts about the future, and they begin to set goals to pursue in life. Reaching the stage of acceptance is not accomplished overnight in the majority of cases, especially for the survivor. The medical team is prepared to help the survivor reach this stage. Q: What are some every day things the family can do to make it through this very stressful time? A: This list is meant to get you started. Work with your family, friends, treatment team, and others to come up with a list that works for you. Seek help when you need it. Accept it when it s offered. Don t try to go it alone. Maintain contact with friends and activities you enjoy. Work out a visitation schedule with other family members, so you have time to yourself. Make sure each member of the family knows they have not been forgotten and left to handle the injury alone. Do not try to keep everything inside. Find someone to talk to about your feelings. Maintain contact with the treatment team. Find a support group. 18 A Family and Survivor s Guide to Spinal Cord Injury

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