Living with SCI
What to Expect When You See a Health Care Professional
Diagnostic tests for spinal cord injuries may include a CT scan, MRI or X-ray These tests will help the doctors get a better look at abnormalities within the spinal cord. Your doctor will be able to see exactly where the spinal cord injury has occurred.
A complete neurological exam will be performed a few days after the injury. This length of time will allow any swelling to subside, which will allow your doctor to diagnose the severity of the spinal cord injury and predict the likelihood of recovery and the possible outcomes from treatment.
Spinal cord injury treatment is informed by your spinal cord injury diagnosis. Timing and medical history, physical examination and diagnostic tests will help your doctor diagnose the possible outcomes and chances of recovery.
Timing and Medical History
Timing and medical history are two important factors in diagnosing a spinal cord injury. The faster a patient can obtain treatment, the better the chances for recovering from the injury.
Also, it is essential to understand how the injury occurred and know a patient’s medical history. Your doctor will need to know if you’ve had any of the following prior to your medical emergency:
- Pain in your neck or back
- Previous injuries or surgeries to your neck or back
- Loss of sensation or weakness in your arms or legs
- Loss of bowel or bladder control
Spinal Cord Injury Physical Examination
A doctor can test sensory functions, muscle movement and strength, and reflexes through a physical examination:
- Sensory messages include the feelings of hot, cold, touch, pain, pressure, and body position.
- Motor messages are sent to the muscles in your arms, hands, fingers, legs, toes, chest, and other parts of your body. These messages tell the muscles how and when to move.
- Reflex messages are involuntary, and they help protect your body with instinctive reactions.
This examination will help your doctor determine if there is damage to your cervical, thoracic, lumbar or sacral vertebrae. These sections of the spine protect groups of nerves that correspond to specific areas of the body.
Prognosis and Recovery
Your doctor may not be able to give you a prognosis right away. Prognosis for patients with spinal cord injuries varies and depends largely on the degree of damage. In many cases, physicians cannot be certain of the extent of immobility until a few months have passed since the injury. Some patients will have more mobility than others. Recovery, if it occurs, typically starts a week to six months after an injury. However, some people experience small improvements for up to one to two years.
Patients often develop several secondary conditions following spinal cord injury. Managing these conditions with qualified health care providers along with a good support system of therapists, family, and friends plays a large role in one’s quality of life. Staying emotionally healthy and maintaining good eating and exercise habits are important.
What Can I Do to Feel Better?
Each person living with a spinal cord injury will have different needs in levels of care and equipment. Some forms of care may include but are not limited to:
- Personal Care: Showering, Toileting, Transferring, and Feeding
- Domestic Services: Meal Preparation, Shopping, Cleaning, Ironing
- Household Support: Gardening, Home Cleaning, Home Maintenance
- Community Access: Transportation and Companionship
- Nursing: Medication
- Other: Childcare, Workplace, and or Educational Support
People with paraplegia may need little or no personal care but may need assistance with domestic duties. Many people with high cervical injury will require permanent 24-hour care. Being closer to the brain and affecting a larger portion of the body, cervical spinal cord injuries are more severe. If there is an injury in the cervical area, it will result intetraplegia/quadriplegia, meaning there is limited or absent feeling or movement below the shoulders/neck. Equipment needs include manual or power wheelchair with battery charger, portable ramps, hoist, pressure relief cushion, shower chair, catheter, adjustable bed, air conditioning, ventilator, physiotherapy, home automation (possible voice controlled), computer, modified vehicle.
- After the initial injury stabilizes, doctors turn their attention to preventing secondary problems that may arise, such as deconditioning, muscle contractures, pressure ulcers, bowel and bladder issues, respiratory infections, and blood clots.
- The length of your hospitalization depends on your condition and the medical issues you’re facing. Once you’re well enough to participate in therapies and treatment, you may transfer to a rehabilitation facility.
- Individuals with spinal cord injuries often need help doing day-to-day tasks, including but not limited to dressing, grooming, bathing, eating, housecleaning, and grocery shopping. These are often called activities of daily living (ADLs) and instrumental activities of daily living (IADLs). A caregiver/personal assistant can help with day to day tasks along with bowel and bladder care, respiratory care, giving medications, positioning, transferring, range of motion exercise, and other tasks. In some cases, a family member can fill this role but, in many cases the caregiver is a paid employee. For more information on hiring a caregiver/personal assistant, please visit United Spinal Association Spinal Cord Resource Center – Guide to Hiring a Caregiver
Child and Youth Rehabilitation
- Have the child get plenty of rest. Keep a regular sleep schedule, including no late nights and no sleepovers.
- Making sure the child avoids high-risk/ high-speed activities such as riding a bicycle, playing sports, or climbing playground equipment, roller coasters or rides that could result in another bump, blow, or jolt to the head or body. Children should not return to these types of activities until their health care professional says they are well enough.
- Giving the child only those drugs that are approved by the pediatrician or family physician.
- Talking with their health care professional about when the child should return to school and other activities and how the parent or caregiver can help the child deal with the challenges that the child may face. For example, your child may need to spend fewer hours at school, rest often, or require more time to take tests.
- Sharing information about the injury with parents, siblings, teachers, counselors, babysitters, coaches, and others who interact with the child helps them understand what has happened and how to meet the child’s needs.
- Medications may be used to manage some of the effects of spinal cord injury. These include medications to control pain and muscle spasticity, as well as medications that can improve bladder control, bowel control and sexual functioning.
- Modern Wheelchairs. Improved, lighter weight wheelchairs provide greater mobility and comfort for spinal cord injury survivors. For some, an electric wheelchair may be needed.
- Computer Adaptations. For someone with limited hand function, computer adaptations may be helpful in operating a computer. Computer adaptations range from simple to complex, such as key guards or voice recognition.
- Electronic Aids to Daily Living. Essentially any device that uses electricity can be controlled with an electronic aid to daily living (EADL). Devices can be turned on or off by switch or voice-controlled and computer-based remotes.
- Electrical Stimulation Devices. These sophisticated devices use electrical stimulation to produce actions. They’re often called functional electrical stimulation (FES) systems, and they use electrical stimulators to control arm and leg muscles to allow people with a spinal cord injury to stand, walk, reach, and grip.
- Robotic Gait Training. This emerging technology is used for retraining walking ability after spinal cord injury.
What are Potential Effects of SCI?
There are certain complications that occur more commonly after spinal cord injury, some of which are medical emergencies. These complications are often referred to as secondary conditions. That’s because they arise from medical risks that come after a spinal cord injury.
|Fractures||Broken bones can occur, even with low-impact activity. People with spinal cord injuries are twice as likely to break leg bones as the general population. This is usually the result of osteopenia or osteoporosis (see below).|
|Osteopenia or Osteoporosis||Chronic bone disease involving low bone mass and deterioration of bone, which can raise the risk of fractures.|
|Deep Vein Thrombosis (DVT) and Pulmonary Embolism||Blood clots that form in a vein deep in the body can cause leg pain, swelling, and redness. If a clot travels through the bloodstream, it can lodge in a lung. This is called a pulmonary embolism, or PE. A PE is a medical emergency.|
|Orthostatic Hypotension||This is sudden low blood pressure that occurs with position changes. It may cause fainting, profuse sweating, and a rapid heart rate.|
|Autonomic Dysreflexia (AD)||This is a risk for people with SCI level T6 and above. Their blood pressure rises significantly, and they may have a pounding headache, a slow heart rate, profuse sweating, goose bumps, flushed skin, blurred vision, and anxiety. This is a medical emergency.|
|Septicemia||This is an infection that enters the bloodstream. Symptoms can include fever and chills, confusion, nausea and vomiting, increased heart rate, and low blood pressure.|
|Pneumonia||This is an infection involving the lungs. This can be caused by bacteria, viruses, or other organisms. Symptoms may include fever, cough, weakness, and shortness of breath.|
|Bladder and Kidney Stones||This is a solid piece of material that forms from substances in the urine. A stone can stay in the kidney or travel down the urinary tract. Stones can block the flow of urine, increase infection risk, and cause pain.|
Because a person with an SCI may be more prone to these medical complications, it is important for survivors to learn about these risks so you can monitor any potential symptoms and discuss with your healthcare professional. You should also discuss ways of preventing them with your healthcare provider.
Tips for Family, Friends, and Caregivers
Understanding Spinal Cord Injury
While the cause and nature of the spinal cord injury varies with the individual, and each person responds according to their personality and prognosis, there are some emotions commonly experienced by those who have had a spinal cord injury:
- Feelings of dependency may cause your loved one to withdraw. For many people, the idea of losing even the smallest bit of self-sufficiency can be almost unbearable.
- He or she may believe they have become a burden on you and others. The person may feel they are “dragging everybody down” and that the family would be “better off” without them.
- Struggles with self-image and self-esteem, and fear of abandonment may contribute to expressions of anger or isolation.
- Embarrassment, or even shame, may arise from unexpected physical changes and loss of their abilities.
- If these feelings become severe, persistent or cause loss of hope it may be symptoms of depression. If you think you’re loved one is depressed talk with their doctor and get help.
Rehabilitation and Recovery
Your first experience as a caregiver for a spinal cord injury (SCI) usually comes during rehabilitation (rehab). The rehab team will take the lead in your loved one’s recovery. During this time there are some things you can do to help.
- Visit and talk with your loved one often. Find activities you can do together, such as playing cards/games or watching TV. Keep in touch with your loved one’s friends and encourage them to visit.
- Help your loved one practice and learn new skills.
- Find out what he or she can do independently or needs help with. Avoid doing things for your loved one that he or she can do without your help.
- Learn what you and your family can do after your loved one returns home. This may include helping him or her with the wheelchair, getting to and from the bathroom, and eating.
Preparing your Home
When you leave a rehabilitation (rehab) center for your home after a spinal cord injury (SCI), you need to have your home ready for your special needs. Following are some of the adaptations and adaptive equipment you may need. Talk with your rehab team about what you will need specifically and the best way to proceed.
- Wheelchair fit. If you are in a wheelchair most of the time, height and width are a concern. You may need to build a ramp into your home for easy entry in your wheelchair. Discuss with your rehab team how best to deal with hall and door width, countertops, water faucets, sinks, towel racks, light switches, and heating and cooling controls.
- Eating and cooking. You may need special handles so you can hold spoons, forks, knives, plates, cups, and other utensils. You may need long straws to help you drink. If you cook, you may need a shorter stove, or you can install a mirror over the stove so you can see the food while it is cooking.
- Dressing and grooming. You may need tools to help you reach your feet, pull on socks, zip up zippers, and open and close buttons. You may also need Velcro fasteners for clothing or shoes, loops in your clothing to help you dress and undress, sponges or bath mitts, and special handles for toothbrushes, combs, razors, and hairbrushes. You may also need special mirrors.
- Other adaptive equipment includes tools that help you pick up faraway things (reachers) and small objects (if you have little pinch strength). You may also need holders for telephones, pens, and pencils, and devices to turn on and adjust electric appliances such as radios, TVs, and computers.
Technology for Caregivers
Today more than ever, technology is available to help make our lives easier in many ways. Technology can play a huge role in caregiving duties today, and the internet itself provides a vast amount of resources for caregiver.
A wide variety of smartphone apps can help caregivers with such things like medication and doctor appointment reminders. There are more detailed applications that can assist with all sorts of healthcare planning, like storing medical information, lists of current physicians and prescriptions and general health tracking. Below are some apps for caregivers:
- WheelMate is a resource for people on the go or traveling in the U.S. or abroad. The app allows wheelchair users and their caregivers to add and search for accessible restrooms and parking spaces in more than 45 countries with ease, according to its app store description.
- CareZone is an app that goes beyond sharing updates and secure posts. It enables users to create custom profiles, maintain medication logs, set reminders, create task lists, and voice messages — which can be shared with dozens of users at once, if necessary. You also can invite loved ones to use the app to be connected to the caregiver.
- CaringBridge is a mobile app that helps caregivers build a site for yourself and for the person you care for. Family and friends can join as well. It helps to keep your schedule coordinated, allows you to keep everyone in your network updated simultaneously, and allows you and others to post notes of support.
- EverNote is a must-download, even for non-caregivers, for its intuitive design and multifunction approach to organization. With this app, users can create documents or recordings, save images or links, and easily document all data you need with searchable “notes.”
- iRelax is a mobile app that helps caregivers also take care of themselves. We know how stressful it can be taking care of a friend or loved one. This app allows you to listen to soothing sounds like the ocean surf, sounds from a night in the forest, and white noise, and help you to combat caregiver burnout.
- Mint is a financial app that compiles all an individual’s financial accounts into a single one-stop access point. This is important because finances are affected by health care concerns. This one-stop access point allows caregivers to keep track of costs of care and to ensure the financial status of the person they are caring for is regularly monitored to prevent fraud.
For more information on tips for families, caregivers, and friends, please visit Shepherd Center’s Spinal Cord Injury Caregiver Guide