Living With a Spinal Cord Injury

Overview

What is a spinal cord injury?

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.

  • Injury to the middle of the back usually affects the legs (paraplegia).
  • Injury to the neck can affect the arms, chest, and legs (quadriplegia).

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.

What causes a spinal cord injury?

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.

What happens after a spinal cord injury?

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:

  • Prevent problems like pressure sores and know when you need to call a doctor.
  • Exercise to keep your muscles strong and flexible.
  • Eat a balanced diet to help you stay healthy and manage your weight.
  • Learn to do things that most people do without thinking, such as managing your bladder and bowel.
  • Use a wheelchair or other devices so you can do things you enjoy.

There is a lot to learn, and it may seem overwhelming at times. But with practice and support, it will get easier.

What is life like with a spinal cord injury?

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.

What Happens

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 necessary. 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 determine 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.

Classifying a spinal cord injury

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:

  • Cervical. The neck area contains 7 cervical vertebrae (C1 through C7) and 8 cervical nerves (C1 through C8). Cervical SCIs usually cause loss of function in the chest, arms, and legs. Cervical injuries can also affect breathing.
  • Thoracic. The chest area contains 12 thoracic vertebrae (T1 through T12) and 12 thoracic nerves (T1 through T12). The first thoracic vertebra, T1, is the vertebra where the top rib attaches to the spine. Thoracic SCIs usually affect the chest and the legs. Injuries to the upper thoracic area can affect breathing.
  • Lumbar. The lumbar area (between the chest area and the pelvis) contains 5 lumbar vertebrae (L1 through L5) and 5 lumbar nerves (L1 through L5). Lumbar SCIs usually affect the hips and legs.
  • Sacral. The sacral area (from the pelvis to the end of the spine) contains 5 sacral vertebrae (S1 through S5) and 5 sacral nerves (S1 through S5). Sacral SCIs also usually affect the hips and legs.

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.

For the family and caregivers

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 determine how serious the injury is and how much movement or feeling will be lost. This generally is not known until swelling and bleeding are reduced and the doctors can find out where the spinal cord has been injured.

Transition into rehabilitation

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.

Rehabilitation

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:

  • Prevent complications related to your spinal cord injury.
  • Do daily functions and activities.
    • Learn how to move yourself from a wheelchair to a bed, chair, or other location.
    • Learn how to perform daily tasks, such as brushing your teeth and cooking.
  • Prepare for your life after rehab.
    • Learn how to cope with your feelings. Many people with an SCI go through a grieving process.
    • Learn how to communicate your needs.
    • Learn how to be intimate physically and emotionally.

Rehab centers

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.

Bladder Care

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 are one of the biggest concerns for people with 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.

Normal voiding

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.

What an SCI does

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:

  • Inability to store urine. You cannot control when your bladder empties (reflex incontinence). This is known as reflex or spastic bladder.
  • Inability to empty the bladder. Your bladder is full but you cannot empty it. It stretches as it continues to fill with urine, which can cause damage to the bladder and kidneys. This is known as a flaccid bladder.

Bladder management

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 a number of tests to help find out about your bladder function. These may include:

Common ways to manage bladder function include the following:

  • Intermittent catheterization programs (ICPs) are often used when you have the ability to use a catheter yourself or someone can do it for you. You insert the catheter—a thin, flexible, hollow tube—through the urethra into the bladder and allow the urine to drain out. It is done at scheduled times, and the catheter is not permanent. For more information, see:
    Using a catheter for men.
    Using a catheter for women.
    You may also hear this called intermittent self-catheterization (ISC), clean intermittent catheterization (CIC), or clean intermittent self-catheterization (CISC).
  • If you cannot use intermittent catheterization, you can use a permanent catheter known as an indwelling Foley catheter. This type of catheter is inserted through the urethra into the bladder and has a balloon on the end that is inflated with sterile water after the end is inside the bladder. The inflated balloon prevents the catheter from slipping out. Urinary tract infections are more likely to occur with long-term use of an indwelling catheter than with an ICP. Caring for the catheter is important to avoid infections.
  • If you use an indwelling Foley catheter, after a period of time you may be able to change to a suprapubic indwelling catheter. This is a permanent catheter that is surgically inserted above the pubic bone directly into the bladder. It does not go through the urethra.
  • For men, a condom catheter can also be used. A catheter and collection bag are attached to a condom. When you urinate, the urine goes through the condom and catheter to the bag. Condom catheters are only for short-term use, because long-term use increases the risk of urinary tract infections, damage to the penis from friction with the condom, and a block in the urethra.
  • If you have a spastic bladder, you may be able to "trigger" the bladder to contract and avoid having to use a catheter. To do this, you can try tapping on the bladder area, stroking your thigh, doing push-ups in your wheelchair, or using Valsalva maneuvers, which are efforts to breathe out without letting air escape through the nose or mouth.
  • It is also possible to use absorbent products, such as adult diapers. But these can result in recurring skin irritations.

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.

Medicines

A number of medicines are available to help you manage your bladder. These include:

  • Anticholinergics, such as oxybutynin and propantheline, which calm the bladder muscles. They may prevent uncontrollable bladder contractions (spasms) that force urine out of the bladder.
  • Cholinergics, such as bethanechol, which can help the bladder to squeeze, forcing out urine.

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).

Bowel Care

A spinal cord injury (SCI) generally affects the process of eliminating waste from the intestines. This can result in a:

  • Reflexive bowel, which means you cannot control when a bowel movement occurs.
  • Flaccid bowel, which means you cannot have a bowel movement. If stool remains in the rectum, mucus and fluid will sometimes leak out around the stool and out the anus (fecal incontinence).

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.

Bowel programs

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:

  • Do your program at the same time every day. Most people do their bowel program in the morning, although you should pick the most convenient time. After you have picked a time, stay with it.
  • Sit up if possible: This can help move the stool down in the intestine. If you cannot sit up, lie on your side.

It is important that you practice cleanliness and be gentle while inserting anything into the anus.

  • Always wash your hands and use gloves. Lubricate the finger of the glove with K-Y jelly or a similar product.
  • For digital stimulation, gently insert the finger in the anus and move it in a circular motion for no more than 10 to 20 seconds every 5 to 10 minutes until you have a bowel movement.
  • To remove stool, gently insert the finger and remove stool. Continue to do so until none comes out. Wait a few minutes and then try again to see if any more stool has moved down.
  • To insert a suppository, first remove stool. Otherwise, the suppository will not work. Take the wrapper off the suppository and insert it as high as you can.
    See a picture of inserting a suppository.

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

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 difficult 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.

Pressure sores are described in four stages:1

  • Stage 1 sores are not open wounds. The skin is closed and may be painful. The skin may appear reddened but there are no breaks or tears in the skin. Skin temperature is often warmer. And the stage 1 sore can feel either firmer or softer than the area around it.
  • At stage 2, the skin usually breaks open, wears away, or forms an ulcer, which is usually tender and painful. The sore expands into deeper layers of the skin. It can look like a scrape (abrasion) or a shallow crater in the skin. Sometimes this stage looks like a blister filled with clear fluid. At this stage, some skin may be damaged beyond repair or may die.
  • In stage 3, the sore gets worse and extends into the tissue beneath the skin, forming a small crater. Fat may show in the sore, but not muscle, tendon, or bone.
  • At stage 4, the pressure sore is very deep, reaching into muscle and bone and causing extensive damage. Damage to deeper tissues, tendons, and joints may occur.

Pressure sores are usually diagnosed with a physical exam. A skin and wound culture or a skin biopsy may be done if your doctor thinks you may have an infection.

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:

  • A new area of redness that does not go away within a few minutes of taking pressure off the area.
  • An area of skin that is warmer or cooler than the surrounding skin.
  • An area of skin that is firmer or softer than the skin around it.

Contact your doctor if you:

  • Think a pressure sore is starting and you are not able to adjust your activities and positioning to protect the area.
  • Notice an increase in the size or drainage of the sore.
  • Notice increased redness around the sore or black areas starting to form.
  • Notice that the sore begins to smell bad and/or the drainage becomes a greenish color.
  • Have a fever.

Treatment

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 difficult 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:

  • The sore is getting smaller.
  • Pinkish tissue is forming along the edges of the sore, gradually moving toward the center.
  • The sore bleeds a little. This means there is blood circulation in the area, which helps healing.

After a pressure sore is healed, it is important to gradually put pressure on the area where the sore had been.

  • Apply pressure for no more than 15 minutes and then check the area for redness. If redness is present, watch how quickly the redness fades. If fading occurs in 15 minutes or less, no damage has occurred. Before applying pressure to the area again, wait at least 1 hour.
  • After three successful 15-minute applications of pressure, you can apply pressure for 30 minutes. Check for redness and how fast it fades, as noted above.
  • If you can do three 30-minute applications successfully, increase the time by 30 minutes a day using the same procedure.
  • If an application of pressure is not successful—that is, if redness returns and does not fade within 15 minutes—stay at that level until you can complete three successful applications.

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).

Lung Care

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 necessary for breathing. This makes it difficult 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 breath on their own.

Things you can do to help prevent lung problems include:

  • Know the signs and symptoms of pneumonia. If you have the symptoms of pneumonia, contact your doctor immediately. Talk to him or her about getting vaccinated for pneumonia and influenza. For more information, see the topic Pneumonia.
  • Cough. People who have had an SCI do not always have the ability to cough forcefully. A forceful cough is important, because it will help you bring up mucus in the lungs, which can help prevent some lung complications. If your cough is weak and you have difficulty bringing up mucus, you may need an assisted cough.
  • Remove excess mucus from the lungs. Coughing may not bring up all the mucus. In this case, you may need chest physiotherapy and/or postural drainage, which involves striking the chest with a cupped hand or applying a vibrating device to the chest to loosen mucus and staying in certain positions to help drain mucus.
  • Practice breathing. Doing exercises, such as breathing out forcefully, can help strengthen the muscles you use for breathing.
  • Do not smoke.

Things you can do that are not directly related to your lungs include:

  • Have correct posture (sitting up straight in a wheelchair) and move around as much as possible. This helps prevent a buildup of mucus.
  • Eat well. Eating healthy foods will help keep you from gaining or losing weight. Being either overweight or underweight can lead to lung problems.
  • Drink plenty of fluids, preferably water. This helps prevent the mucus in your lungs from getting thick and makes the mucus easier to cough up. If you have concerns with bladder control, talk to your doctor about how much and when to drink fluids.

Choking

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:

  1. Hit you sharply 4 times between the shoulder blades with the palm of his or her hand.
  2. Use an assisted cough 4 times.
  3. Repeat steps 1 and 2 above until you stop choking.

Intimacy and Fertility

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.

Desire and sexual arousal

Both men and women remain interested in sexual activity after an SCI, although the level of interest appears to decrease after the injury. Most men with an SCI resume sexual activity within 1 year of the injury, although how often they have sex decreases.2

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 they 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.

Treatment

There is little research on treating sexual function in SCIs.2 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 difficulty 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. 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.

Fertility

Men with SCIs usually have difficulty fathering a child. Most men with SCIs have poor sperm quality and have trouble ejaculating.2 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.2 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:3

  • Urinary tract infections (UTIs) , which increase during pregnancy in women with SCIs. Your urine should be tested frequently.
  • Pressure sores . The additional weight of pregnancy puts greater pressure on the skin and may increase the risk of pressure sores. Be sure you perform skin exams regularly.
  • Lung function. Women with damage higher on the spinal cord may experience reduced lung function. Ventilator support may be needed.
  • Autonomic dysreflexia. During labor, the symptoms of this condition may be the same as seen in uterine contractions. Anesthesia should be used during labor to prevent this serious condition.

Living With a Spinal Cord Injury

Grieving

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, and by disproving irrational thoughts, which is looking at the thought rationally and listing why it may be irrational.

For more information on grief and the grieving process, see the topic Grief and Grieving.

Chronic pain

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.

Strength and flexibility

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 maintain 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 with SCIs take part in sports. And there are often leagues or groups to promote wheelchair basketball and racing and other activities. People with 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).

Nutrition

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:

  • Balanced—you eat many different types of foods from different food groups. Food groups include whole grains (rice, bread, pasta, or cereal), fruits, vegetables, dairy (milk, yogurt, or cheese) and meat, poultry, fish, dry beans, nuts, or eggs.
  • Varied—you eat a variety of foods within each food group (for example, eating different fruits from the fruit group instead of eating only apples). A varied diet helps you get all the nutrients you need, because no single food provides every nutrient.
  • Moderate—you eat a little of everything but nothing in excess. There are no good foods or bad foods. All foods can fit in a healthy diet if you eat everything in moderation.

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.

For more information on a healthy diet and weight, see the topics Healthy Eating and Weight Management.

Mobility

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.

Adapting your home

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.

Thinking of the future

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.4

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.

When to Call a Doctor

There may be a time when you have a medical emergency and need to contact a doctor.

Be prepared to call your SCI therapist, 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:

  • A pounding headache.
  • A flushed face and/or red blotches on the skin above the level of spinal injury.
  • Sweating above the level of spinal injury.
  • Nasal stuffiness.
  • Nausea.
  • A slow heart rate (bradycardia).
  • Goose bumps below the level of spinal injury.
  • Cold, clammy skin below the level of spinal injury.

Call 911 or other emergency services if you fall or have another accident and you notice:

  • Swelling on a part of your body where you have no feeling or movement.
  • Increased muscle spasms or other signs of spasticity.

Call your doctor immediately if you have symptoms of a urinary tract infection (UTI). These include:

  • Fever and chills.
  • Nausea and vomiting.
  • Headache.
  • Reddish or pinkish urine.
  • Foul-smelling urine.
  • Cloudy urine.
  • Increased muscle spasms or other signs of spasticity.

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:

  • Fever of 100°F (37.8°C) to 106°F (41.1°C).
  • Shaking chills.
  • Cough that often produces colored mucus from the lungs. Mucus may be rust-colored or green or tinged with blood. Older adults may have only a slight cough and no mucus.
  • Rapid, often shallow, breathing.
  • Chest wall pain, often made worse by coughing or deep breathing.
  • Fatigue and feelings of weakness (malaise).
  • Increased muscle spasms or other signs of spasticity.

Call your doctor for an appointment if you have a pressure sore and:

  • The skin is broken.
  • The sore has increased in size or is draining more.
  • It has increased in redness, or black areas are starting to form.
  • It starts to smell bad, and/or the drainage becomes a greenish color.
  • You have a fever.

Concerns of the Caregiver

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:

  • Visiting and talking with him or her often. Find activities you can do together, such as playing cards or watching TV. Try to keep in touch with your loved one's friends as much as possible, and encourage them to visit.
  • Helping him or her practice and learn new skills.
  • Finding out what he or she can do independently or needs help with. Avoid doing things for your loved one that he or she is able to do without assistance.
  • Learning what you and your family can do after your loved one returns home. This may include assisting him or her with the wheelchair, getting to and from the bathroom, and eating.

After rehab

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 factors that make this difficult, such as having:

  • Your own health concerns that limit what you can do.
  • A job that supplies money for the family.
  • Doubts whether you will be able to be a full-time caregiver.

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.

  • Don't try to do everything yourself. Ask other family members to help. And find out what other type of help may be available.
  • Take care of yourself by eating well and getting enough rest.
  • Make sure you do not ignore your own health while you are caring for your loved one. Keep up with your own doctor visits, and make sure to take your medicines regularly, if needed.
  • Locate a support group to attend. Support groups may be able to offer advice about insurance coverage too.
  • Schedule time for yourself. Get out of the house to do things you enjoy, run errands, or go shopping.

Communicate

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:

  • Afraid that your loved one will start to have complications, such as pressure sores, and you will not be able to help.
  • Afraid that you will not be able to accept or overcome disabilities and are not prepared for the responsibility of caring for someone who has an SCI.
  • Depressed over losing the lifestyle you previously enjoyed with your companion.
  • Worried about the costs of rehab and loss of income.
  • Frustrated with your perceptions. For example, you may feel you do not have enough time for yourself, or you may just feel overwhelmed.
  • Frustrated with your loved one's perceptions. For example, you may feel he or she is overly negative or worries too much about having to depend on others.

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.

Search for a Cure

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 it 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.

Neurorestorative and neuroregenerative

These types of research look at ways to stimulate activity of or growth in damaged nerve cells.

  • Potassium channel blockers, such as 4-aminopyridine (4-AP), may improve communication between undamaged areas and damaged areas. This medicine is currently in early tests with humans.
  • Neurotransmitters , such as serotonin, regulate neuron growth. They may help nerve cells regenerate.
  • Nogo blockers. Nogo is a chemical that prevents axons, part of a nerve cell, from growing. Axons carry messages between nerve cells. Nogo research looks at ways to block nogo, thus allowing axon growth.
  • Glatiramer acetate is a medicine used in the treatment of multiple sclerosis. It may stimulate the immune system to produce a type of cell (lymphocytes) that in turn protects the spinal cord and may stimulate regeneration.

Neuroconstructive and neurogenetic

Neuroconstructive research explores transplanting cells into the spinal cord, and neurogenetic research involves inserting genes into the spinal cord.

  • Stem cells are immature cells that have the ability to grow into any one of the body's cell types, including those destroyed or injured in an SCI. The stem cells are transplanted into the spinal cord. Stem cells can come from animals or humans and can be embryonic, fetal, or adult.
  • Other types of cells may also be useful in helping people with SCIs. These include olfactory ensheathing glia, Schwann cells, and precursor cells.

At this time, it is not well known what type of cell to use or when and where to transplant cells.

Functional

Functional research looks at ways to improve what people with SCIs can do physically, leading to an improved quality of life.

  • Electrical stimulation uses low-level electrical current to stimulate nervous system cells and muscles. The stimulated activity can change the activity and behavior of cells. This therapy may help people who have limited movement (such as being able to walk a little) to do more and to do it more easily. Activity may lead to some cell regeneration.
  • Tendon transfer is a surgical procedure that takes a tendon of an active muscle and attaches it to a paralyzed muscle. This can result in better motion. One example of this is the NeuroControl Freehand System, which, along with electrical stimulation, can provide hand grasp to some people with SCIs.
  • Locomotion therapy uses a harness and a treadmill to help people with SCI use their legs and walk. A physical therapist helps with leg movements. Research reports that people with incomplete SCIs showed improvement in walking speeds, endurance, and the need for support.5

References

Citations

  1. National Pressure Ulcer Advisory Panel (2007). Pressure ulcer stages. Available online: http://www.npuap.org/documents/NPUAP2007_PU_Def_and_Descriptions.pdf.
  2. Benevento BT, Sipski ML (2002). Neurogenic bladder, neurogenic bowel, and sexual dysfunction in people with spinal cord injury. Physical Therapy, 82(6): 601–612.
  3. 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.
  4. 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.
  5. 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.

Credits

Author Shannon Erstad, MBA/MPH
Editor Kathleen M. Ariss, MS
Associate Editor Pat Truman, MATC
Primary Medical Reviewer William M. Green, MD - Emergency Medicine
Specialist Medical Reviewer Nancy Greenwald, MD - Physical Medicine and Rehabilitation
Last Updated February 18, 2009

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