A spinal cord injury impacts the entire bodily system, but there is hope for a very bright future. In part one of this blog series, we learned about why rehabilitation following a spinal cord injury is critical. Take a moment to read what Diane Gilewicz, MSN, RN, CRRN, has to share about the types of disabilities that may occur and how caregivers and WakeMed’s Spinal Cord Injury Program can help.

What impairments result from SCI?

When the spinal cord is damaged, messages cannot “jump over” the damaged area. This means that messages sent from the brain cannot make it to the body parts below the damaged area, and vice versa.

You may hear the following terms related to spinal cord injuries:

• Quadriplegia (or Tetraplegia) — This term is used for injuries of the cervical (neck) region affecting function of arms, trunk, and legs. These injuries may also affect your bowel, bladder and sexual function.
• Paraplegia — This term is used for injuries of the thoracic, lumbar or sacral regions affecting function of the trunk and legs. These injuries may affect bowel, bladder and sexual function.

Spinal cord injuries can also be described as complete or incomplete injuries.

Could you talk more about the secondary symptoms that occur in SCI?

• Bowel and Bladder: After an SCI, the kidneys usually continue to filter waste, and urine is stored in the bladder. However, messages sent from your brain through your spinal cord to your bladder and the muscles that control it, may not be able to get through. You will need to establish a bladder program. A bladder management program allows you to schedule when your bladder empties. Emptying your bladder on a regular schedule helps to prevent bladder accidents or incontinence, decrease urinary tract infections, avoid damage to your urinary tract and limit autonomic dysreflexia. You and/or a caregiver can manage your bowels to prevent unplanned bowel movements, constipation and diarrhea. The goal is to train the bowel to empty on a schedule so that it is predictable.
• Skin: When you have SCI, the nerves that normally signal discomfort and alert you to relieve pressure by changing position may no longer work. This leads to a higher likelihood of the skin and tissues under the skin breaking down and becoming damaged, which is known as a pressure injury.
• Pressure injuries often develop on skin that covers bony areas, such as the hips, heels or tailbone, and are the result of staying in a position too long without shifting weight, not enough padding or wearing clothing or shoes that fit too tightly.
• Pain after SCI can be complicated and confusing. You may feel pain where you have feeling. But you may also feel pain in an area where otherwise you have no feeling. There are different types of pain. It is most important for you and your care team to determine what specific type of pain you are feeling so that you can get the most appropriate treatment.
• Lungs/breathing: Breathing is usually something you do without thinking, but an SCI may affect 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.
• Mobility, and how mobility may change, is an important aspect of SCI. The ability to move lets you participate more fully in community life and do the things you would like to do. Mobility devices, such as a wheelchair, can help you get to work, go shopping and get around outside your home. They may allow you to participate in races, basketball, tennis and other sports. You can often get around as quickly as anyone else can walking. Most people with an SCI use a wheelchair at some point. Even if you can get around with a walker, there will probably be times when you need a wheelchair.

What kind of complications can arise from SCI?

Here are the potential complications of SCI:

Autonomic Dysreflexia 

This is a condition in which your involuntary nervous system overreacts to something happening to your body, usually below your level of injury. This is most often seen in people with SCI at T6 and above. This is a medical emergency as it can cause a dangerous increase in blood pressure. Be prepared to call 911 or other emergency services if you notice the symptoms of autonomic dysreflexia. If you or a caregiver cannot treat it promptly and correctly, it may lead to seizures, stroke and even death.

Symptoms include:

• Pounding headache
• 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
• Slow heart rate
• Goosebumps below the level of spinal injury
• Cold, clammy skin below the level of injury

IMPORTANT: What to do if you feel you have autonomic dysreflexia:

• Sit up straight or raise your head so you are looking straight ahead. If you can lower your legs, do so. You need to be sitting upright until your blood pressure is back to normal.
• Loosen or take off any tight clothing or accessories. This includes braces, catheter tape, socks or stockings, shoes, and bandages.
• Empty your bladder via catheterization.
• Empty your bowel.
• Check your skin for red spots that mean you might have a pressure injury.
• Check your blood pressure every 5 minutes to see if it improves.
• Call your doctor, even if symptoms go away and your blood pressure is decreasing.
• If the symptoms return, repeat the above steps and go to the emergency room or call 911.

Postural Hypotension 

Changes in blood pressure can occur especially when moving into a seated or standing position. Many times, these position changes cause blood pressure to drop low and can cause dizziness, lightheadedness, nausea, sweating, fainting or cool/clammy skin. Your body will need to slowly get used to these positions. To prevent this, move slowly when changing position, stay hydrated and use compression socks or an abdominal binder. If you experience these symptoms, lean back and elevate your legs to help bring your blood pressure back up.

Pulmonary Embolism and Deep Vein Thrombosis (DVT) 

These are conditions caused by blood clots that happen in your lungs (pulmonary embolism) or arms/legs (DVT). Blood clots can occur due to limitations in mobility, and you may be on medications to prevent these.

• Signs of Pulmonary Embolism:
  • chest/shoulder/jaw pain, difficulty breathing, fast heart rate, pale complexion, bluish tint to lips, red streaks in coughed up secretions.
  • What to do:
    • CALL 911/GO TO THE EMERGENCY DEPARTMENT, decrease activity, sit up to assist with breathing, remove tight clothing, use oxygen if available.
• Signs of DVT:
  • Swelling (especially one arm or leg more swollen than the other), warmth, redness in arm or leg, fever, pain if able to feel, spasticity.
  • What to do:
    • CALL 911/GO TO THE EMERGENCY DEPARTMENT, elevate affected arm/leg, remove compression socks, DO NOT exercise/massage the arm/leg.

Spasticity

Spasticity is an abnormal increase in muscle tension that often happens with SCI. Muscles can “draw up,” “jump” or move without you intending them to. This can be painful and annoying. You may also experience an increase in spasticity as your body’s response to something else going on like a urinary tract infection, skin sore or other irritating stimuli below your level of injury.

• What to do:
  • Stretching exercises and weight-bearing exercises can help to decrease the spasms. If spasms are affecting your mobility or causing pain or skin breakdown, talk to your doctor about options for medicines. If you notice a sudden change in spasticity, consult your doctor or rehab team to determine the cause.

Pneumonia

Pneumonia is a lung infection that can make you very sick and it happens when bacteria get into your lungs. With SCI, it may be more difficult to complete a strong cough due to weakness in your muscles and this makes it harder to cough up mucus from your lungs. As this mucus stays in your lungs, it creates a place for bacteria to grow. 

It is important to know the signs of pneumonia:

• Cough
• Fever, chills, sweating
• Fast breathing and feeling short of breath
• Chest pain that often feels worse when you cough or breathe in
• Fast heartbeat
• Feeling very tired or very weak
• What to do:
  • Contact your doctor immediately and seek treatment.

Edema

Edema is swelling that often happens in feet, ankles, hands, or fingers. It usually is worse after sitting up all day. Unlike DVT, it usually happens on both sides of your body and does not come with the associated warmth or redness.

• What to do:
  • Use compression socks, prop up your legs and feet, exercise, complete range of motion exercises.

Temperature Regulation 

The ability to regulate body temperature can be limited after SCI. This is caused by having decreased feeling below your level of injury which would normally signal the brain to either cool down by sweating or constrict blood vessels to keep you warm. Your ability to sweat especially below your level of injury may be limited.

What to do:

• Control the temperature of your environment as best as you can.
• Avoid low body temperature — dress warmly in cold weather and cover up to prevent exposed skin, drink warm fluids, use blankets. DO NOT use electric blankets or heating pads on areas of your body with limited sensation because they could cause burns on your skin.
• Avoid high body temperature — stay out of the sun on hot/humid days, drink cool fluids, spray self with cool water and use a fan.

Osteoporosis

Osteoporosis happens when bone tissue breaks down from decreased minerals in the bones, causing bones to become weak and thin and increasing the risk for bone fractures. After SCI, your metabolism changes, and calcium and other minerals are lost more quickly. Also, limited pressure through your bones from standing and walking can speed up osteoporosis. People with SCIs need to have a bone density study yearly to monitor the strength of their bones. There are treatments available to address bone density. Speak with your therapist about exercises to help with this.

Depression 

Depression is a serious medical illness that involves the brain. It’s more than just a feeling of being down in the dumps or blue for a few days. Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest but impacts everyone differently. It can affect how you feel, think and behave and can lead to a variety of emotional and physical problems, including changes in your mood, outlook, ambition, problem solving, activity level and bodily processes (sleep, energy and appetite). Depression can also affect overall health and wellness. If you are depressed, you may not look after yourself as you need to by drinking enough water, taking care of your skin or managing your diet.

Depression is common among people who experience paralysis, but there are effective ways to cope with the stresses of paralysis. Depression is highly treatable using psychotherapy, medications (antidepressants) or a combination of both. It is important to talk to your doctor about your feelings and concerns.

Thoughts of suicide can also occur when things look most hopeless. In SCI, for example, risk of suicide is highest in the first five years after the injury when you are still navigating your new normal. The most important factors in preventing suicide are spotting depression early, getting the right treatments and developing problem solving skills.

Talk to others about how you feel, whether that be family, friends, your rehabilitation team members, or a peer who has also experienced an SCI. Talking about it will help you feel less alone and more in control. Another available resource can be talking to a professional counselor who has experience working with rehabilitation populations.

Maladaptive Behaviors 

Occasionally, people react to situations in ways that are not effective for their health. When the behavior is used to continuously avoid the perceived negative situation, maladaptation occurs. Maladaptive behavior can result when you do not see a path to your desired future. This can happen with any chronic illness or major lifestyle change. With maladaptive behavior, self-destructive actions are taken to avoid undesired situations.

A common maladaptive behaviors is avoidance. This involves not doing something that should be done. It can be avoiding a person, such as your health care professional; an activity, such as a bowel program; or it can even be a thought, such as not recognizing changes due to SCI. Avoidance becomes maladaptive when your physical or mental health is harmed or in danger of being harmed. Self-destructive behavior can also include self-harm, eating disorders and substance abuse.

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What else should people be aware of with SCI?

Intimacy and Sexual function

All spinal cord injuries 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 your changes in sexual function and how to best deal with them.

The most important thing is how well you communicate. Talk to your partner. Be honest about how the SCI has affected your sexual function and how you feel about it. Most people remain interested in sexual activity after an SCI, although the level of interest may decrease. Your sex life will probably be different after your SCI, but sexual intimacy is still possible and encouraged. Your rehabilitation team can help provide further resources regarding intimacy and fertility.

Nutrition 

Nutrition is an important aspect of your overall health and having proper nutrition can help reduce your risk of some complications and make other tasks, such as your bowel program, easier. Maintaining a healthy weight can also reduce your risk of pressure injuries. After an SCI, you will have different nutritional needs and may need to adjust how and what you eat.

Adjustment 

Recovering from SCI involves the whole person — body, mind and spirit. Recovery is emotional as well as physical. Each person has his or her own way of dealing with the events that happen day-to-day. After SCI, this does not change. You may feel a variety of emotions, including anger, frustration, depression, fear, sadness, anxiety, helplessness, resentment or grief. You may also experience a sense of relief, hope or confidence that you are succeeding in dealing with a difficult life situation. These feelings often come and go. Having these feelings is a NORMAL part of the adjustment process. However, letting your emotions control you can result in unhealthy decisions, maladaptive behaviors and longer adjustment to your SCI.

Here are a few suggestions that have helped others through tough times and may get you thinking about your own situation:

• Talk about it — Talk to others about how you feel, whether that be family, friends, your rehabilitation team member or a peer who has also experienced an SCI. Talking about it will help you feel more solid and in control. Discussing your feelings doesn’t change the situation, but it will help to lighten your burden. Another available resource can be talking to a professional counselor who has experience working with rehabilitation populations and can be very helpful during tough times.
• Attitude — Develop a win/win attitude. Every time you say “I can’t” you give yourself that message and pretty soon you’ll be convinced that you can’t before you even give it a try. Believe in yourself and trust your rehabilitation team’s belief in you. Develop a sense that there is always something for you to gain in a situation, exercise or challenge. Substitute phrases like “that’s worth a try” or “I don’t see why not.”
• Take one day at a time — Thinking of having pain or numerous limitations for the rest of your life would be very overwhelming. In fact, dealing with any situation forever would be hard to take. So, break it down into smaller, manageable parts — a few minutes of therapy? Sure.
• Be good to yourself — Do something good for yourself each day. For example, take a long, relaxing shower at the end of the day, dress up in your favorite outfit, spend time reading, listen to music, or watch an enjoyable TV show. Also, make sure you rest at night and eat a healthy diet.
• Easy does it — Set your goals so that they can be achieved in a manageable timeframe.
• Develop a sense of humor — Everyone has a sense of humor, but when we are under stress, we sometimes forget to take advantage of one of our greatest and most healing power. So, share a funny story or a joke. Get involved with recreation programs, play games and have fun just for the fun of it.
• Relax — As crazy as it may seem, relaxing can be hard to do. There are simple exercises and relaxation techniques that can be done. Practice relaxing every day.
• Practice — With time and practice, your new skills will become more natural, your confidence will increase and you will begin to feel more like yourself again.
• Work on accepting life on its terms — Change is change. Don’t attach judgment to it, such as calling it good or bad. Instead, look for what you need in each change you experience. Look for opportunities for growth.

How can a caregiver learn to take care of a loved one with SCI?

Seeing a loved one go through many physical and psychological changes can be difficult. While in the hospital, observe and learn how to care for your loved one with their new SCI. The rehab staff will demonstrate care skills for you and provide educational materials. Let the staff know if you prefer printed or video learning. The more you practice, the more comfortable you will be when it is time to bring your loved one home.

Visit and talk to your loved one often in the hospital. Find out what they can do independently and what they need help with. Avoid doing things for your loved one that they can do without your help. This will give them a sense of control and accomplishment. Help your loved one learn and practice new skills. Find meaningful activities you can do together. Bring in their favorite music, pictures or pastimes. Ask your loved one if they are ready for visitors. Keep visits brief because rehab is physically and mentally challenging, and rest is a key component to recovery.

When you return home, help your loved one create a new daily schedule and routine. Encourage your loved one to be as independent as possible. Help arrange transportation to therapy and medical appointments. Continue to keep your loved one connect to family and friends. Get involved in the SCI community by joining the North Carolina Spinal Cord Injury Association, United Spinal Association or social media groups online.

Caring for a loved one can be extremely stressful. It is important to take care of yourself and ask for help when needed. Schedule respite time from your loved one to attend your own medical appointments and social activities. Consider finding a counselor to help you discover and strengthen your coping skills and share your feelings to prevent caregiver burnout. Once you are in a daily routine, explore any further home modifications that may be needed to facilitate your loved one’s care and independence. Participate in outpatient family training opportunities for you or other caregivers who will be helping with your loved one’s care.

What are the next steps in caring for SCI? 

Recovery from SCI is a lifelong journey. Patients at all stages of recovery are welcome to join the WakeMed Spinal Cord Injury Program to build lifelong, supportive relationships, fostering confidence, independence and vitality.

• Our Facilities
• Our Team
• Admissions
• Advanced Technology
• Dedicated Clinical Case Management
• Fitness Program

References and Additional Resources

SCI Rehabilitation Patient and Family Guide (wakemed.org)

Rehab & Physical Therapy, WakeMed Health & Hospitals, Raleigh & Wake County, NC

Mayo Clinic

Injury Prevention, WakeMed Health & Hospitals, Raleigh & Wake County, NC