A spinal cord injury is damage to the spinal cord. The spinal cord is a soft bundle of nerves that extends from the base of the brain to the lower back. It runs through the spinal canal, a tunnel formed by holes in the bones of the spine. The bony spine helps protect the spinal cord. See pictures of the spine and the spinal cord.
The spinal cord carries messages between the brain and the rest of the body. These messages allow you to move and to feel touch, among other things. A spinal cord injury stops the flow of messages below the site of the injury. The closer the injury is to the brain, the more of the body is affected.
A spinal cord injury may be complete or incomplete. A person with a complete injury does not have any feeling or movement below the level of the injury. In an incomplete injury, the person still has some feeling or movement in the affected area.
A spinal cord injury usually happens because of a sudden severe blow to the spine. Often this is the result of a car accident, fall, gunshot, or sporting accident. Sometimes the spinal cord is damaged by infection or spinal stenosis, or by a birth defect, such as spina bifida.
At the hospital, treatment starts right away to prevent more damage to the spine and spinal cord. Steps are taken to get your blood pressure stable and help you breathe. You may get a steroid medicine to reduce swelling of the spinal cord. A number of tests are done. These include X-ray of the spine, CT scan, MRI, and ultrasound of the kidneys. These tests are repeated over time to check how you are doing.
A few days after the injury, you will be tested to see how you respond to pinpricks and light touch all over your body. The doctor will ask you to move different parts of your body and test the strength of your muscles. These tests help the doctor know how severe the injury is and how likely it is that you could get back some feeling and movement. Most recovery occurs in the first 6 months.
As soon as you are stable, rehabilitation (rehab) starts. The goal of rehab is to help prepare you for life after rehab and help you be as independent as possible. What happens in rehab depends on your level of injury. The rehab team will help you to learn how to:
There is a lot to learn, and it may seem overwhelming at times. But with practice and support, it will get easier.
Having a spinal cord injury changes some things forever, but you can still have a full and rewarding life. A saying among people who have a spinal cord injury is, "Before your injury, you could do 10,000 things. Now you can do 9,000. So are you going to worry about the 1,000 things you can't do or focus on the 9,000 things you can do?"
After they adjust, many people with spinal cord injuries are able to work, drive, play sports, and have relationships and families. Your rehab team can provide the support, training, and resources to help you move toward new goals. It is up to you to make the most of what they have to offer.
Adapting to life with a spinal cord injury can be tough. You can expect to feel sad or angry at times or to grieve for your lost abilities. It is important to express these feelings so they don't keep you from moving ahead. Talk with family and friends, find a support group, or connect with others online. Talking to other people who have spinal cord injuries can be a big help.
It is hard to enjoy life if you have ongoing pain or depression. If you do, tell your doctor. There are medicines and other treatments that can help.
Caring for a person with a spinal cord injury can be both rewarding and difficult. If you help take care of someone with a spinal cord injury, don't forget to take care of yourself too. Find a local support group, and make time to do things you enjoy.
Learning about a spinal cord injury (SCI):
Learning about rehabilitation:
Managing medical conditions and complications:
Living with an SCI:
A traumatic spinal cord injury (SCI) begins with a blow to the spine, resulting in broken or dislocated vertebrae (the individual bone segments that make up the spine). The vertebrae bruise or tear the spinal cord, damaging nerve cells. When the nerve cells are damaged, messages cannot travel back and forth between the brain and the rest of the body, resulting in complete or partial loss of movement (paralysis) and feeling.
A person with a potential SCI is taken to an emergency department and then to an intensive care unit. Initial management of the injury includes stabilizing blood pressure and lung function as well as the spine, to prevent further damage. Because a spinal cord injury is often caused by a serious accident, treatment for other injuries is often needed. Immediately after an SCI, treatment decisions are made quickly by the doctor because of the seriousness of the injury.
Initial diagnosis often is made when a doctor examines you during emergency treatment. A few days after the injury, your doctor will ask you questions. Also, he or she will test not only the strength of key muscles but also your response to light touch and pinpricks all over your body.
The following tests may be done immediately, to help find out the extent of the injury, and routinely throughout and after you leave rehabilitation (rehab).
A spinal cord injury usually happens because of a sudden severe injury to the spine. But sometimes the spinal cord is damaged by infection, bleeding into the space around the spinal cord, spinal stenosis, or by a birth defect, such as spina bifida.
An SCI can be classified based on function (how much feeling and movement you have) or on where the damage occurred. When a nerve in the spinal cord is injured, the nerve location and number are often used to describe how much damage there is.
The vertebrae and spinal nerves are organized into segments, starting at the top of the spinal cord, and within each segment they are numbered. The segments are as follows:
People with SCIs often use a segment of the spine to talk about their functional level. (Your functional level is how much of your body you can move and feel.) For example, you might describe yourself as a "C7."
The nerves around a vertebra control specific parts of the body. Paralysis occurs in the areas of the body that are controlled by the nerves associated with the damaged vertebrae and the nerves below the damaged vertebrae. The higher the injury on the spinal cord, the more paralysis there is. For example, damage to the spinal nerves in the neck can result in paralysis of the chest, arms, and legs (tetraplegia, also known as quadriplegia). Damage lower down on the spine (thoracic, lumbar, or sacral segments) can result in paralysis of the legs and lower body (paraplegia). Breathing is only affected by injuries high on the spinal cord. But bowel and bladder control can be affected no matter where the spinal cord is injured.
Damage to the spinal cord can be complete or incomplete. In a complete SCI, you do not have feeling or voluntary movement of the areas of your body that are controlled by your lowest sacral nerves—S4 and S5. These nerves control feeling and movement of your anus and perineum. In an incomplete SCI, you have varying amounts of movement and feeling of the areas of your body controlled by the sacral nerves. See how your level of injury affects function.
Some recovery of feeling and movement may return after the injury—how much depends on the level of injury, the strength of your muscles, and whether the injury is complete or incomplete. Most recovery occurs within the first 6 months of the injury.
After a traumatic SCI, your loved ones will often ask questions about the injury and what it means. This should be encouraged, although you should keep your answers short, simple, and honest. You cannot give a complete answer, because it is often difficult to know how serious the injury is and how much movement or feeling will be lost. This typically is not known until swelling and bleeding are reduced and the doctors can find out where the spinal cord has been injured.
After emergency treatment and stabilization, there is a transition into rehab. Rehab centers help you adjust to life, both physically and emotionally, with less mobility and feeling than you previously had. What happens in rehab depends on your level of injury. You may have to learn how to manage your bowel and bladder, walk with crutches, do breathing exercises, and move between a wheelchair and another location. The goal of rehab is to help you be as independent as possible.
Before rehab, your spine will be stabilized with surgery, braces, or both.
As soon as you are stabilized after your spinal cord injury (SCI), your transition into rehabilitation (rehab) begins. The initial focus of rehab is to prevent complications related to your SCI and for you to relearn how to do daily functions, sometimes by using different muscle groups.
Rehab centers help you adjust—physically and emotionally—to life with less mobility and feeling than you previously had. What rehab does depends on which part of your spine was injured. Rehab can include learning how to:
Rehab for an SCI generally takes place in a special center. You and your family work with a rehab team, which includes your doctor, rehab nurses, and specialists such as physical and occupational therapists. Your rehab team designs a unique plan for your recovery that will help you recover as much function as possible, prevent complications, and help you live as independently as possible.
Choosing the right rehab center is important. Be sure that you choose one that meets your specific needs. Before choosing a rehab center, ask questions about its staff, accreditation, activities, and how it transitions you back into your community.
You may not have control of your bladder after a spinal cord injury (SCI). You may not realize that your bladder is full and you need to urinate, or you may not be able to use the muscles that control your ability to urinate. Good bladder management can improve your quality of life and prevent bladder problems, which is one of the biggest concerns for people who have SCIs.
Poor bladder management can lead to urinary tract infections (UTIs), kidney and bladder problems, sepsis (a bloodstream infection), and in rare cases, kidney failure. For information on testing for, treating, and preventing UTIs, see the topic Urinary Tract Infections in Teens and Adults.
Your kidneys and bladder work together to make urine and remove it from your body. The kidneys filter waste products and water from the blood to form urine. The urine moves from the kidneys through tubes called ureters to the bladder, which stores the urine until it is full. The bladder is made of muscle (detrusor muscle) and can stretch to hold about 2 cups [16 fl oz (475 mL)] of urine. From the bladder, urine leaves the body through another thin tube, the urethra. Sphincter muscles at the top of the urethra control the flow of urine from the bladder. See a picture of the male and female urinary systems.
In normal urination, when the bladder is full, a message is sent from the bladder to the brain. The brain sends a message back to the bladder to squeeze (contract) the detrusor muscle and relax the sphincter muscles so you can urinate. After the bladder starts to empty, it normally empties all of the urine.
After an SCI, the kidneys usually continue to filter waste, and urine is stored in the bladder. But messages may not be able to move between your bladder and sphincter muscles and your brain. This can result in the:
A bladder management program lets you or a caregiver empty your bladder when it is easy for you and helps you avoid bladder accidents and prevent UTIs. You and your rehabilitation team decide which bladder management program is best for you. You need to consider where your spinal cord is injured and how it has affected your bladder function. You also need to consider your lifestyle, how likely you are to get bladder infections (susceptibility), and whether you or a caregiver is able to use a catheter.
Your doctor may do some tests to help find out about your bladder function. These may include:
Common ways to manage bladder function include the following:
You may use just one program or a combination of methods. In general, any of the first three methods can be used if you cannot store urine (spastic bladder), and an ICP is used if you cannot empty your bladder (flaccid bladder).
The most important factors in bladder management are monitoring the amount of fluids you drink, following a regular schedule for emptying your bladder, and being sure that you empty your bladder completely. Your rehab team will help you set up a schedule based on your needs and the amount of fluids you generally drink.
A number of medicines are available to help you manage your bladder. These include:
Research continues on bladder management. New methods include surgically implanted components that stimulate the bladder through a radio control.
Note: Bladder problems can trigger autonomic dysreflexia, a syndrome in which there is a sudden onset of very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. Although autonomic dysreflexia rarely leads to these more serious complications, it is important to know the symptoms and watch for them. Autonomic dysreflexia is more common in people with an injury to the thoracic nerves of the spine or above (T6 or above).
A spinal cord injury (SCI) generally affects the process of eliminating waste from the intestines. This can result in a:
You or a caregiver can manage both of these types of bowel problems to prevent unplanned bowel movements, constipation, and diarrhea. Although this often seems overwhelming at first, knowing what to do and establishing a pattern makes bowel care easier and reduces your risk of accidents.
When choosing a way to deal with bowel problems, you and your rehabilitation (rehab) team will discuss such factors as the type of bowel problem you have, your diet, whether you or a caregiver will do the program, and any medicines that may affect your program.
For a reflexive bowel, you usually use a stool softener, a suppository to trigger the bowel movement, and/or stimulation with your finger (digital stimulation). There are many stool softeners and suppositories available. You will have to experiment to find the one that works best for you.
For a flaccid bowel, you usually use digital stimulation and manual removal (disimpaction) of the stool. At first, you do this program every other day. Later, you may need to do it more often to prevent accidents. You may also have to adjust how much and when you eat.
For some people with SCI, eating more fiber can help with managing their bowel habits. Good sources of fiber include whole-grain breads and cereals, fruits, and vegetables.
For best results:
It is important that you practice cleanliness and be gentle while inserting anything into the anus.
Note: Bowel problems can trigger autonomic dysreflexia, a syndrome in which there is a sudden onset of very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. Although autonomic dysreflexia rarely leads to these more serious complications, it is important to know the symptoms and watch for them. Autonomic dysreflexia is more common in people with an injury to the thoracic nerves of the spine or above (T6 or above).
Pressure sores (bed sores) are an injury to the skin and the tissue under the skin. They are a frequent and sometimes serious complication of a spinal cord injury (SCI). They can range from mild reddening of the skin to severe complications, such as infection of the bone (osteomyelitis) or blood (sepsis). They can be hard to treat and slow to heal.
In people with SCIs, the nerves that normally signal discomfort and alert you to relieve pressure by changing position may no longer work. It is important for you to pay attention to possible pressure sores and change your position frequently when you are sitting or lying down.
Pressure sores are usually caused by unrelieved pressure. They often develop on skin that covers bony areas (such as the hips, heels, or tailbone). Constant pressure on the skin reduces blood supply to the skin and to the tissues beneath the skin. Oxygen and nutrients carried by the blood cannot reach the cells in the tissue, eventually causing cell death, breakdown of the skin, and a pressure sore.
Other causes may include friction, which is the rubbing that occurs when a person is pulled across bed sheets or other surfaces, and shear, which is movement (such as sliding down a chair) that causes the skin to fold over itself, cutting off the blood supply and possibly causing pressure sores.
You or your caregiver can help prevent pressure sores by using proper pressure-relieving supports and devices and changing your position frequently, whether you're in a bed or a wheelchair. You can also help prevent pressure sores if you avoid smoking, eat a balanced diet that includes plenty of protein, and control your weight. For more information, see the topic Pressure Sores.
Watch for early signs of a pressure sore. These can include:
Contact your doctor if you:
General treatment for pressure sores is to keep the area dry and clean, eat well, and reduce pressure. All pressure sores need to be treated early, because after a sore progresses to stage 3 or 4, it is hard to treat and can lead to serious complications. Specific treatment depends on the stage of the pressure sores.
As you treat a pressure sore, you will know it is healing correctly if:
After a pressure sore is healed, it is important to gradually put pressure on the area where the sore had been.
Note: Pressure sores can trigger autonomic dysreflexia, a syndrome in which there is a sudden onset of very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. Although autonomic dysreflexia rarely leads to these more serious complications, it is important to know the symptoms and watch for them. Autonomic dysreflexia is more common in people with an injury to the thoracic nerves of the spine or above (T6 or above).
Breathing is usually an unconscious act: we do it without knowing it. But a spinal cord injury (SCI) may result in your not being able to use some of the muscles needed for breathing. This makes it hard to breathe, cough, and bring up mucus from the lungs, which leads to a greater risk of lung infections such as pneumonia.
How your breathing muscles are affected and what it means to your ability to breathe depends on which part of your spine was injured. People with injuries lower on the spinal cord (below T12) usually do not lose control of these muscles and have no trouble breathing. People with SCIs high on the neck may need a ventilator. People with injuries between these levels have a partial loss of the breathing muscles but can usually still breathe on their own.
Things you can do to help prevent lung problems include:
Things you can do that are not directly related to your lungs include:
Choking is a danger if you have an SCI, because the usual cough mechanism may not be strong enough to bring up the item that is choking you. If choking occurs, your caregiver should:
A spinal cord injury (SCI) can affect intimacy, both physically and emotionally. The injury may result in changes in relationships, sexual activity and the desire for sexual activity, and the ability to have children.
After an SCI, how you look and what you are able to do changes. You may use crutches or a wheelchair and may not be able to take part in all the activities you did previously. You may also feel less of a person sexually: your SCI may have affected how your sexual organs function. These changes often result in frustration, anger, and disappointment, all of which can strain a relationship. People with SCIs may wonder if they will be able to maintain the relationship they are in or be able to develop new ones.
It is important to understand that being intimate means more than just having sex. Your mind can be sexually stimulating to others. And your interests, ideas, and behavior play a greater role in defining you than your appearance or your physical ability to have sex. What makes you unique is your view of the world and how you choose to live. All of this may be more important in a relationship than your ability to have sexual intercourse. Remember that a relationship depends on many things, including your shared interests, how you deal with your personal likes and dislikes, and how you treat each other.
The most important factor in a relationship is how well you communicate. If you are in an intimate relationship or are seeking one, be honest about how the SCI has affected your sexual function physically and how you feel about it. Always keep in mind that people with SCIs are attractive, have relationships and marry, have an active sex life, and can father or bear children.
Both men and women remain interested in sexual activity after an SCI, although the level of interest appears to decrease after the injury. Many men with an SCI resume sexual activity within about 1 year of the injury, although how often they have sex decreases.
Usually, men and women are sexually aroused through two pathways: direct stimulation of the genitals or other erotic area (reflex arousal) or through thinking, hearing, or seeing something sexually arousing (psychogenic arousal). In men, this usually results in an erection, and in women, lubrication of the vagina and swelling of the clitoris. An SCI can affect either of these pathways, and people with an SCI may or may not have a changed or absent physical response to arousal.
Men who are able to achieve erection may find that the erection is not rigid enough or does not last long enough for sexual activity. Women may have some, or complete, loss of vaginal sensation and muscle control. Both men and women can achieve orgasm, although it may not be of the same intensity as before the SCI. Men will sometimes experience retrograde ejaculation, in which semen is ejaculated into the bladder, not through the penis.
All SCIs are different. How SCIs affect intimacy and sexual function—and how people will react to the change—varies. Because of this, you need to make your own observations and evaluate your experiences to understand the changes in sexual function and how to best deal with them.
There is little research on treating sexual function in SCIs. For men who cannot achieve an erection, the same treatments that are used for erection problems (erectile dysfunction) may be used. These include:
For information on the treatment of erection problems, see the topic Erection Problems.
A vibrating device can also help men obtain an erection.
Always talk to a doctor familiar with SCIs before using any medicines or assistive devices. You should discuss the location of your injury, possible side effects, and any other medical conditions you have. You also need to watch for autonomic dysreflexia, a syndrome in which there is a sudden onset of excessively high blood pressure. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.
Women may have problems being aroused and have little or no vaginal lubrication. You can work with your partner to find areas of your body that react to stimulation. The medicine sildenafil (Viagra) can also help women become aroused. A vibrating device may also help. Lack of lubrication can result in problems such as vaginal tearing or pain during intercourse. If this is a problem, a water-based lubricant such as Astroglide will help, but do not use oil-based lubricants.
Both men and women can benefit from counseling, talking with each other, and sensual exercises. Your sex life will likely be different after your SCI, but sexual intimacy is still possible and encouraged. Your rehabilitation center may have a counselor or other health professional who specializes in sexual health after an SCI. He or she may be able to help you and your partner with these issues.
Men with SCIs usually have difficulty fathering a child. Most men with SCIs have poor sperm quality and have trouble ejaculating. To have children, men with SCIs can use penile stimulation to obtain sperm for assistive reproductive technologies.
Stimulation can be done with a vibrator (penile vibratory stimulation, or PVS). Vibrators are available that are specially made to induce ejaculation in men with SCIs. Vibrators can damage your skin. Use them carefully if you do not have feeling in the penis. If PVS is not successful, rectal probe electroejaculation (RPE) is an option. In this procedure, your doctor inserts an electrical probe into the rectum to stimulate ejaculation.
SCIs usually do not affect a woman's ability to have children. Most women have a brief pause in their menstrual cycle after an SCI. But after their period returns, they usually can have children. It is important for women who are sexually active after an SCI to use effective birth control if they do not want to get pregnant. Women with SCIs who want to get pregnant should be aware of the special medical, psychological, and social issues involved in an SCI pregnancy. And they should work with doctors who also understand these needs. Common concerns and complications include:2
Adjusting to life after a spinal cord injury and learning to live with new limitations can be extremely frustrating. A spinal cord injury (SCI) is a life-changing event for you and your loved ones. And getting used to a limited ability to move or feel sensation is difficult and can take a long time. You—and your loved ones—may experience grief. Although we often think of grief as an emotion experienced after the death of a loved one, you may also grieve for your lack of feeling or movement or for your past lifestyle.
You may experience many emotions after your SCI: anger, sadness, and disbelief are just a few. Admitting to these emotions and discussing them with others will make it less likely that your emotions will control you and your actions. Letting your emotions control you can result in unhealthy decisions and behavior, a longer rehabilitation (rehab), and taking longer to adjust to your SCI.
Your emotions may trigger irrational thoughts. These are thoughts that you may believe, but they are based on lack of information, the wrong information, or false assumptions. These types of thoughts can result in unhealthy behavior that can hurt you.
For example, you may think "This injury means that I will never have a job." Thinking this may result in harmful actions, such as substance abuse ("Why shouldn't I drink? No one is going to hire me.") or a lack of effort in your care ("I know what pressure sores are, but what difference does it make?").
But your injury does not mean you will never have a job. If you talk to others who have SCIs and to doctors who work with them, or if you read research, you see that people with SCIs work, have responsible positions in companies, and do well. This is what you have to keep in mind.
You can help yourself avoid irrational thoughts by practicing thought-stopping, which is consciously identifying and stopping irrational thoughts.
For more information on grief and the grieving process, see the topic Grief and Grieving.
Pain in an SCI can be complicated and confusing. There are different types of pain, and they are often described in different ways. You may feel pain where you have feeling. But you may also feel pain in an area where otherwise you have no feeling. The pain may be severe at some times, but at other times it may disappear or bother you only a little.
The most common type of pain experienced with SCI is neuropathic pain around the injury area. This is also known as the "circle of fire" or the "ring of fire." Neuropathic pain is caused by damage to the nervous system. Other types of pain include musculoskeletal (pain in the bones, muscles, and joints), and visceral (pain in the abdomen).
The specific treatment for your pain depends on the type of pain: in general, you use medicines and you modify activities and activity levels. Do not ignore your pain: talk to your doctor about it. He or she can help figure out the type of pain and how to manage it. Also, pain can signal a more serious problem.
For more information on managing chronic pain, see the topic Chronic Pain.
An SCI may make it difficult or impossible for you to move your arms and legs. Movement is what keeps your muscles strong and your joints flexible. So if you cannot move your muscles and joints easily, you may lose strength and some of your range of motion. This will make it harder to perform daily activities, such as getting dressed or moving between your wheelchair and other locations. With exercise, you can keep or improve your flexibility and reduce muscle spasticity after an SCI. Exercise can help you prevent complications such as heart problems, diabetes, pressure sores, pneumonia, chronic obstructive pulmonary disease, high blood pressure, and urinary tract infections. And exercise can also help you prevent obesity.
What exercises you can do will depend on what part of your spinal cord was injured. You may be able to do some strengthening exercises with free weights or weight machines. You may be able to do flexibility exercises yourself, or you may need help. Your doctor can help you find the best exercises for you.
Taking part in sports is an excellent way to exercise. Many people who have SCIs take part in sports. And there are often leagues or groups to promote wheelchair basketball and racing and other activities. People who have SCIs also hike, climb mountains, and ski. Taking part in active recreation not only helps your health but also provides emotional benefits.
Note: Exercise may trigger autonomic dysreflexia, a syndrome characterized by a sudden onset of very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. Although autonomic dysreflexia rarely leads to these more serious complications, it is important to know the symptoms and watch for them. Autonomic dysreflexia is more common in people with an injury to the thoracic nerves of the spine or above (T6 or above).
What you eat makes a difference in your health. By eating healthy foods, you can reduce your risk of some complications and make other tasks, such as bowel management, easier.
A healthy diet is:
Eating healthy foods helps you reach and stay at a healthy weight. Being either underweight or overweight increases your risk of pressure sores. If you are underweight, there is more pressure on the bony areas where the sores are likely to develop. If you are overweight, there may be increased friction on the skin when you move, which also can result in pressure sores.
People with SCIs may have special nutritional needs, such as needing protein to prevent pressure sores or increased fiber to help with bowel care. A registered dietitian can help you plan a diet to meet your nutritional needs.
Mobility is an important aspect of an SCI. The ability to move lets you take part more fully in community life and do the things you would like to do. You are not "confined" to crutches or wheelchairs. Rather, these devices make you independent. Mobility devices offer you access to work or shopping or any other travel outside the home. They may allow you to take part in races, basketball, tennis, and other sports.
Types of mobility devices include braces, crutches, walkers, wheelchairs, and scooters.
Moving from your wheelchair to other locations is known as a transfer. Your injury and strength will determine what type of transfer you can do: you may be able to do it yourself, or you may need assistance. There are general things that are important to know when transferring, such as locking your wheelchair and making the distance between the transfer surfaces as small as possible.
As your rehab ends, you and your loved ones need to start thinking about what you need to do when you are at home. Because you may have to use a wheelchair (lowering your height) and have limited movement and feeling, you may have to adapt your home.
Considerations for adapting your home include ramps and widened doorways, special utensils for eating, and special devices for dressing and grooming.
For more information on adapting your lifestyle and home, contact any of the groups and Internet sites listed in the Other Places to Get Help section of this topic.
Today, people with SCIs live much longer than in the past. In many cases, one year after the injury, life expectancy is close to that of a person without an SCI.3
If you are planning to work, you have the same legal rights as before your injury. People with spinal cord injuries who want to work are legally protected from discrimination by the Americans with Disabilities Act.
Plan ahead for possible serious and life-threatening complications. You, your family, and your doctor should discuss what types of medical treatment you want to receive (such as whether you want to receive mechanical ventilation) if sudden, life-threatening breathing problems happen. This discussion may include the possibility of your creating an advance directive to state your wishes if you become unable to communicate them. For more information, see the topics Writing an Advance Directive and Care at the End of Life.
There may be a time when you have a medical emergency and need to contact a doctor.
Be prepared to call your SCI provider, 911, or other emergency services if you or the person with the spinal cord injury (SCI) has the symptoms of autonomic dysreflexia, a syndrome in which there is a sudden onset of excessively high blood pressure. If you or a caregiver do not treat it promptly and correctly, it may lead to seizures, stroke, and even death. Symptoms include:
Call 911 or other emergency services if you fall or have another accident and you notice:
Call your doctor immediately if you have symptoms of a urinary tract infection (UTI). These include:
Depending on your level of injury, you may also feel burning while urinating and/or pain or discomfort in the lower pelvic area, abdomen, or lower back.
Call your doctor immediately if you have the symptoms of pneumonia. These include:
Call your doctor for an appointment if you have a pressure sore and:
Your first experience as a caregiver for a spinal cord injury (SCI) usually comes during rehabilitation (rehab). Although the rehab team takes the lead at this point in your loved one's recovery, you can help by:
Before your loved one returns home, a decision has to be made about who is to be the main caregiver. You or another family member may feel you should be the main caregiver. But there may be reasons why this could be hard, such as:
Discuss with the rehab team what it means to be a caregiver. They can help you see what the full impact of caring for someone with an SCI will be. And if you cannot be a full-time caregiver, the rehab team can help you find a nursing home, assisted-living facility, or in-home help. They can also give you training in helping your loved one, even if you are not the full-time caregiver. You may need to help him or her do exercises, move in and out of the wheelchair, and get dressed, for example.
Whether or not you are the main caregiver, you need to attend to your own well-being.
Whether or not you are the main caregiver for your loved one, living and/or caring for him or her can be both rewarding and difficult. Watching someone deal with such a serious injury can be painful but also inspirational. Sharing the small and large victories can provide a shared pleasure and forge a stronger relationship. But setbacks and "bad days" can be frustrating and traumatic.
You may feel:
The key to working through frustrations is communication. It is important that both you and your loved one talk about what bothers you and about what your expectation are. Remember that in a sense you are in a "new" relationship: roles in your family may have changed dramatically. Discuss what you are feeling about the changes and explain them. This can help you understand each other's needs and foster a healthy relationship. Always remember that love and support are key to your loved one's recovery and to your well-being as a caregiver.
Although, in the past, the results of a spinal cord injury (SCI) were considered permanent, new research is changing this perception. There may be a cure for paralysis some day.
When nerve cells in the spinal cord are damaged, they cannot always repair themselves. And other nerve cells in the area cannot continue to grow. Some of the major research for SCIs looks at ways to stimulate activity in damaged nerve cells (neurorestorative), stimulate growth in damaged nerve cells (neuroregenerative), transplant new nerve tissue into the spinal cord (neuroconstructive), and insert genes into the spinal cord (neurogenetic). Research is also looking at ways to improve what people with SCIs can do physically (functional research).
The pace of research is often slow. Spinal cord injuries are extremely complex. And research must move from theory to practical and from animal studies to human studies. When a therapy is being studied in humans, it must be proved beneficial and safe. And it can take years before a new therapy reaches the public.
Following are some of the areas where research is being done. Some of them may be at the point where people with SCIs are using them on a trial basis. Others might still be in the animal-study stage. They all have the potential to lead to a return of some feeling and movement in paralyzed areas.
For more information on research for a cure for an SCI, see the Other Places to Get Help section of this topic.
These types of research look at ways to stimulate activity of or growth in damaged nerve cells.
Neuroconstructive research explores transplanting cells into the spinal cord, and neurogenetic research involves inserting genes into the spinal cord.
At this time, it is not well known what type of cell to use or when and where to transplant cells.
Functional research looks at ways to improve what people with SCIs can do physically, leading to an improved quality of life.
|American Occupational Therapy Association|
|4720 Montgomery Lane, P.O. Box 31220|
|Bethesda, MD 20824-1220|
The American Occupational Therapy Association (AOTA) is the nationally recognized professional association of approximately 35,000 occupational therapists, occupational therapy assistants, and students of occupational therapy. AOTA's mission is to advance the quality, availability, use, and support of occupational therapy through standard-setting, advocacy, education, and research on behalf of its members and the public.
|National Spinal Cord Injury Association|
|1 Church Street|
|Rockville, MD 20850|
The National Spinal Cord Injury Association provides information and referral to individuals with new and existing spinal cord injuries and to their families. It sponsors chapters nationwide, and the association website provides an extensive number of links to information and education on spinal cord injuries.
|Rehabilitation Resource and Training Center on Spinal Cord Injury|
|National Rehabilitation Hospital|
|102 Irving Street, NW|
|Washington, DC 20010|
The Rehabilitation Resource and Training Center (RRTC) on Spinal Cord Injury (SCI) is a collaborative effort by national leaders in SCI-related research, clinical expertise, support and education organizations, independent living centers, and consumers with SCI. The focus of this RRTC is on developing knowledge about and prevention of secondary conditions in SCI. The primary conditions studied will be cardiovascular disease and osteoporosis, although a wide range of other secondary conditions, such as respiratory problems, urinary tract infection, depression, and pain, as well as quality of life, will be examined. The network will also study how exercise and physical activity can help prevent certain secondary conditions after SCI. The website includes links to consumer information and publications on a wide range of subjects related to SCI.
|Spinal Cord Injury Information Network|
This website offers educational materials and information on services of the University of Alabama Spinal Cord Injury Model System (UAB-SCIMS). It includes links to national organizations, government agencies, commercial products, and educational resources related to spinal cord injury.
|U.S. Department of Justice: Americans With Disabilities Act|
|950 Pennsylvania Avenue, NW|
|Civil Rights Division, Disability Rights Section—NYA|
|Washington, DC 20530|
This Department of Justice website has links to information about the legal rights of Americans who are in some way disabled. Legal rights to housing, jobs, mobility, education, technology use, health care, and recreation are described. And the website also has information about the latest legal developments that affect people with disabilities.
- National Pressure Ulcer Advisory Panel (2007). Pressure ulcer stages. Available online: http://www.npuap.org/pr2.htm.
- American College of Obstetricians and Gynecologists (2002, reaffirmed 2005). Obstetric management of patients with spinal cord injuries. ACOG Committee Opinion No. 275. Obstetrics and Gynecology, 100(3): 625–627.
- National SCI Statistical Center (2008). Spinal cord injury: Facts and figures at a glance. Birmingham, AL: National Spinal Cord Injury Statistical Center. Available online: http://www.spinalcord.uab.edu/show.asp?durki=116979.
- Kalb RG (2003). Getting the spinal cord to think for itself. Archives of Neurology, 60(6): 805–808.
Other Works Consulted
- Cardenas DD, et al. (2002). Classification of chronic pain associated with spinal cord injuries. Archives of Physical Medicine and Rehabilitation, 83(12): 1708–1714.
- Keenan MAE, Mehta S (2006). Spinal cord injury section of Rehabilitation. In HB Skinner, ed., Current Diagnosis and Treatment in Orthopedics, 4th ed., pp. 681–688. New York: Lange Medical Books/McGraw-Hill.
- McDonald JW, Becker D (2003). Spinal cord injury: Promising interventions and realistic goals. American Journal of Physical Medicine and Rehabilitation, 82(10, Suppl): S38–S49.
- Winslow C, Rozovsky J (2003). Effect of spinal cord injury on the respiratory system. American Journal of Physical Medicine and Rehabilitation, 82(10): 803–814.
|Primary Medical Reviewer||Anne C. Poinier, MD - Internal Medicine|
|Specialist Medical Reviewer||Nancy Greenwald, MD - Physical Medicine and Rehabilitation|
|Last Revised||February 16, 2011|
Last Revised: February 16, 2011
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