Paralysis, and the inability to walk are the primary and most obvious complications after a spinal cord injury. However, most days not walking is the least of my worries. Unfortunately, there are many secondary conditions that need to be considered as well. Severity and level of injury will affect the number of complications. As will factors such as age, weight, diet and immune function. Unfortunately, secondary complications after a SCI are generally a matter of when, not if. Simple things can potentially become life threatening. It can take longer to diagnose many problems if your body isn’t able to tell you something is wrong, and the signal is interrupted along the way.
It is inevitable that everyone will encounter different issues, and these may change through a person’s life. Thus, it is critical to stay educated and informed.
Living with a Spinal Cord Injury or SCI can feel like a full time job some days. With the excessive planning, and things to remember. It also can feel like trying to drive a car with no dashboard.. no speedometer, no fuel gauge, no odometer.. but still knowing when you need to fill up the gas tank.
Needless to say in the beginning it can be overwhelming and extremely frustrating. Overtime things become more or less second nature. But there are still hiccups along the way. Overall the most important thing is to be patient and understanding with yourself. Pre-injury you had x many years to get used to living in a certain body, now you have to learn to live in a completely new one. Step by step it gets better, and more automatic. It can be annoying that things generally take longer than before, or have to be done in a more round-about way. However, at the end of the day I am thankful for medicine, and technology to be advanced enough to allow me to live a healthy and independent life. It is scary to think, but the average life expectancy after a spinal cord injury pre-1940 was only 2 years! This is due to complications from secondary conditions.
Here is a list of secondary conditions people with spinal cord injuries deal with.I will try to keep things short and sweet. I just wanted to emphasize all of the additional complications that come with a spinal cord injury. Many of these are “invisible” ailments. I am not a medical professional and this is not intended to replace professional medical advice, I just wanted to make people aware of all of the secondary concerns that come along with a spinal cord injury. Being paralyzed is so much more than just relying on a wheelchair for mobility, there is a lot going on beneath the surface.
UTIs – Urinary tract infections are more prominent among the spinal cord injury population due to catheterization. These can quickly become life threatening if left untreated.
Long-term Kidney Health – Without the typical early detection signs of UTIs, bacteria can make its way up to the kidneys and cause long-term damage overtime. There is also a higher risk for developing kidney stones due to increased calcium supplementation to promote bone health and inadequate hydration, causing calcium to precipitate and stones to form.
Edema/Swelling of Lower Extremities – Without muscle tone in the lower limbs blood and fluids pool in the legs and feet overtime. This causes the feet and ankles to swell up and can increase the likelihood of blood clots forming.
Circulation Issues – Edema and fluid build up can lead to circulation issues. Cold feet or legs are usually a tell tale sign.
Muscle Atrophy- Muscles quickly shrink with disuse, this leaves less “meat” to protect bones and tissue.
Cellulitis: Bacterial infections of the skin and underlying tissue are common and can become serious and life threatening. This is often caused by inadequate air flow which allows bacteria to thrive. The skin will often appear red, swollen and inflamed.
Cardiovascular Disease and Stroke- Circulation issues, and less options regarding cardio workouts can result in higher rates of cardiovascular disease and stroke.
Blood Pressure- Blood pressure is in part regulated by the autonomic nervous system. So blood pressure regulation may be thrown off resulting in either high or low blood pressure instances.
DVTs- Deep vein thrombosis or a DVT is a blood clot that occurs deep in muscle tissue. It can cause inflammation, swelling and can potentially become a fatal pulmonary embolism if it is pushed into the lungs.
Nerve Pain – Nerve pain is constant and unrelenting. It varies in severity (and person to person) throughout the day. It generally feels like electric shocks, stabbing, or prickly tingling.
Hypersensitivity at the level of injury – This is tied into nerve pain as the nerves at the level of injury can become super sensitive from damage. Even a light touch feels like stabbing pain. Due to my level of injury I get hypersensitivity pains after I eat food. I can feel my food digesting and moving through my small intestine. Spicy foods aggravate the pain as well.
Temperature Sensitivity- Temperature regulation is controlled by the spinal cord and nervous system. Therefore, damage can cause incongruent or false signals to fire. Extreme hot or cold can manifest as severe nerve pain.
Respiratory Issues- Paralysis can affect the muscles that control your breathing, namely the diaphragm. Depending on level of injury it may be hard to take a deep breath. Even more serious: it may be difficult or impossible to cough or clear the airways if there is a blockage.
Bladder Complications- A neurogenic bladder is a full time job on it’s own. Learning how to properly catheterize to empty your bladder can be a steep learning curve. Not to mention having to deal with bladder spasms and incontinence.
Bowel Complications- Neurogenic bowels are the steepest learning curve to manage. Depending on injury level your digestive system can be sluggish or completely stop. This can lead to bowel impactions or rupture which can lead to septic shock if not caught early.
Pressure Ulcers aka Pressure Sores- Sitting in the same position, combined with muscle atrophy and losing padding can result in pressure ulcers forming that can quickly progress to a stage three or four, and become life-threatening. These cases may require long periods of bed-rest and potential surgery.
Spasticity- Muscle movement of the lower limbs comes from the spinal cord. When this signal is interrupted or damaged it can cause painful and annoying involuntary muscle contractions and shaking.
Muscle Contractures- Muscle tears can easily occur due to increased spasticity, as well as from overuse of the upper body muscles.
Scoliosis- Muscles may be asymmetric in strength on either side of the back causing the spine to shift or curve one way or another resulting in back pain and alignment issues.
Brittle Bones- Muscles usually pull against bones to keep them strong. Without this bones become increasingly brittle, especially without weight bearing exercises. This coupled with calcium leaching can result in having the bone density equivalent of a 70 year old women 2 years post injury.
Bone Fractures- Due to weakened bones a simple fall or high impact event can cause fractures to occur. I have even heard of people breaking their legs doing something as simple as putting on a shoe.
Psychological- This is the death by 1000 cuts of living with a spinal cord injury. It’s the stares, the scheduling, the inaccessibility, the looks of pity, the overbearing strangers, loss of friendships, learning how to live in a new body and grieving the life you once lived and the person you used to be. Depression and suicide rates are five to six times higher compared to the average population.
Socioeconomic- People with disabilities face barriers to employment due to inaccessibility, and discrimination. Additionally, a person may be unable to resume the same kind of work after sustaining a spinal cord injury. Many physical or mechanical jobs are difficult or impossible. It can also be a challenge to find accessible housing and support. Not to mention the increased expense to purchase necessary medical equipment and supplies such as catheters, gloves and medications.
Autonomic Dysreflexia– The spinal cord is the information superhighway of the body. When it is damaged it can result in these signals improperly firing. Autonomic dysreflexia occurs when an unrelated reaction occurs from a stimuli.. For example your blood pressure may spike dangerously high if your body temperature gets too hot. Or your blood pressure may drop and you feel light headed when standing up.
Trouble Regulating Body Temperature- Sometimes you don’t realize you are too hot until it is too late and it can be very hard to cool down. Conversely, it can be hard to warm up if there is no muscle mass present to generate heat from resting muscle metabolism or physical activity. In addition, in extreme weather conditions extra caution has to be taken.
Sexual Dysfunction – This affects everyone differently, but loss of sensation can lead to loss of interest in sex for some. There is also major stigma around disability and sexuality. As well as the fetishization of disabled bodies. At the end of the day humans are sexual beings and being disabled makes you no less of a human than someone who is able bodied.
Immunodeficiency – The spinal cord is involved with immunity and a spinal cord injury can result in a lowered immune response. There are many factors that can contribute to a weakened immune system, lack of proper sleep, poor diet, and additional underlying health concerns. There is also a component of the immune system that fights neurologic pain as if it were a physical injury. When it occurs constantly it can cause the immune system to work into overdrive and may eventually cause a crash.
Heterotopic Ossification- This is when muscles or other tissues calcify and become bone, this can lead to stiffness and inability to move joints. Basically bone tissue grows where it is not usualy present.
Irregular Menstruation – Often it will skip a month or two immediately after injury. However, some may not get a period for up to a year. It is also common to have irregular cycles and inconsistent periods as your body adjusts to it’s new normal.
Sepsis- This can be a potentially fatal infection that can occur as a result of a bladder/kidney infection, intestinal rupture, pressure ulcers or other sources of infection.
Upper Extremity Overuse/Strain/Pain- The upper body and shoulders are not designed to perform repetitive motions such as pushing and transfers over long periods of time. Improper technique and overuse can lead to tears or breaks. Repetitive pushing motion can also lead to shortened forearm muscles which can lead to carpal tunnel and other wrist ailments. It is important to cross train all of these muscles and implement a proper stretching routine.
Shorter Life Expectancy – Always sitting and leading a sedentary lifestyle can increase the risk of heart disease and stroke. There is also the risk of infections and other ailments compounding overtime to become more serious with old age. A spinal cord injury is not the death sentence it was 80 years ago, but there are a multitude of secondary conditions that can lead to serious health hazards that can prove fatal.
Fatigue- It can be grueling and exhausting taking care of a body that does not function as intended. Everything takes a longer period of time and even “simple tasks” like getting dressed or having a shower can feel like a workout.
Slower Healing- The spinal cord is involved in relaying a signal from the injured area to the brain so healing can occur and the immune response is initiated. When this signal is interrupted it can result in longer healing times below the level of injury.
Unintentional Injuries not Noticed (scrapes, cuts, scalds, burns, frostbite)- You have to be extremely vigilant about extreme temperatures or potential dangers. Being careful not to drop scalding water on your lap or have exposed skin when it is cold outside. As previously mentioned, these kind of injuries can take longer to heal and can potentially become a point of infection as well.
Broken/Ill fitting equipment – Getting fitted for your first wheelchair can feel like a whirlwind, there are so many different variables to consider. Many people end up with a wheelchair that is too wide or tall than what they need for optimal ergonomics and pushing form. It is helpful to trial different chairs for as long as possible before deciding on the one that fits your needs the best. Keep in mind that your body will change a lot with in the first year as muscles atrophy. Improper fitting chairs or equipment can result in strain and upper body injuries as well as pain from improper alignment.
Broken Hardware – This has been my personal bane of existence over the past year… Often after a spinal cord injury a spinal fusion is performed where the vertebrae are stabilized by metal rods and screws. This provides a framework to allow the damaged vertebrae to heal and fuse. Once fused two or three vertebrae essentially becomes one giant vertebrae. Unfortunately, until this fusion occurs there is risk of hardware failure that can cause the back to re-break. Which means you are back to square one in terms of independence and healing.
Long-term liver health if on a bunch of pain medication – The liver and the detoxification system of the body can be overloaded by numerous medications and can lead to cirrhosis or scarring.
Anti-biotic resistance over time – Antibiotics used to treat UTI’s, or other infections that occur can result in these becoming less effective or require a higher dose overtime.
Poor Sleep Quality/Difficultly Falling Asleep- It can be difficult to fall asleep due to nerve pain or physical discomfort. It is also inconvenient to have to wake up every 2 hours to reposition yourself to make sure pressure ulcers do not form. It can be difficult to fall into a deep and restful sleep under these conditions. This can lead to a decreased immune response and manifest as other physical or emotional ailments overtime.
Living with a spinal cord injury can be stressful and scary to say the least. It feels like there is a million things to remember and schedule every part of your life. I won’t sugar coat it, it is grueling and exhausting. It is a full time job keeping yourself alive and healthy. There’s no “off-days” after a spinal cord injury. Constant planning and proactive health management. But it helps to get into good habits to live a full and healthy life. In general, your body levels out a bit in the first year or two. The brain is strong and can adapt. The best thing you can do or your long term health is to develop good habits early on.
My aim in writing this is not to scare people new to the SCI world, but to keep these things in mind and stay aware. Maintain checkups with your doctors to ensure any issues are caught early and can be resolved before becoming life-threatening. Hopefully, this was informative to educate about all the “invisible” secondary complications that come with a spinal cord injury. It is so much more than just having to use a wheelchair and not being able to walk. I hope this gave some perspective and insight!
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