What Doctors Don’t Tell You But Should After an Injury
Everyone assumes their doctor will tell them everything they need to know after a spinal cord injury, but sadly this is not the case. From the ER doctor to your rehabilitation doctor, all the doctors you encounter after A spinal cord injury will tell you very important things, but it is impossible for them to tell you everything.
Mainly this stems from them not having a spinal cord injury themselves. A doctor can go to school for spinal cord injury medicine and have 20 years of experience, but nothing replaces living with a spinal cord injury. Here is a list of tips from people who have lived with a spinal cord injury for decades on what they wish their doctors would've told them after their injuries.
One of the first things your doctor will tell you is to do a range of motion on a regular basis. While doctors will tell you to do a range of motion to keep your legs limber, they won't tell you what you should really know — that you are at a high risk of contractions if you fail to do your range of motion regularly (2x a day).
Even if you can move your arms, for example, those with C5-6 quadriplegia, it is important to do a range of motion in your arms as well since there is less extension due to the triceps being paralyzed. You always want your limbs to have a full range of motion.
Contractions are very painful and occur when muscles bind up and refuse to budge. Contractions can be fixed, but only via surgery, and the surgery is not always successful. It can take several years, even up to 20 years post-injury, but many people get contractions in their arms and legs due to not doing enough range of motion.
Oftentimes patients and doctors are so concerned about functional return and living independently after a spinal cord injury that health risks like heart health can be overlooked. Not being able to stand or walk for several years can have a significant effect on your heart and doctors will rarely discuss this with you when you are first injured. Even if you are young, you can quickly run the risk of heart disease. "Sitting disease" is a real thing.
To help, you can do a lot by exercising on a regular basis, ie, short cardio sessions that get your heart rate up. Many physical therapists recommend people with spinal cord injuries do at least 20 minutes of cardio, 3 to 4 times a week. It doesn't require a significant amount of exercise to make an impact on your heart health, even if you sit often.
Doctors will tell you that you have a higher risk of osteoporosis due to no longer walking/standing, but they fail to tell you important health maintenance suggestions for bone health, like getting a Dexascan each year. This scan can detect osteoporosis. Or they will forget to tell you about infusion drugs, taken annually, that can have a huge impact on bone strength.
Doctors will recommend you use a standing frame or standing wheelchair to help, but these devices, while great, need to be used for several hours a day in order to have an impact on the prevention of osteoporosis.
Everyone automatically sees a psychologist after sustaining a spinal cord injury, but doctors will rarely mention how depression and anxiety are common in the spinal cord injury population, and that you are at risk of developing these conditions at some point (up to 80% risk in recent studies).
Mental health however is an issue that more and more people care about. The good news as well is that many mental health conditions can be treated with medication or therapy. Doctors like to tell you that you'll find a new place in your life and that you will move on from your able-bodied life, but that is not actually true.
Doctors should actually tell you that living with a spinal cord injury is a lifelong grieving process, such as losing a loved one. You never fully get over the loss of your previous able-bodied life and body, but you figure out a way to live with the loss.
20 Year Mark
And lastly, many doctors don't understand why, but many begin to experience a lot of health problems after being paralyzed at the 20-year mark post-injury. There are a lot of unanswered questions about the long-term health of people with spinal cord injuries. Dr. J Glen House, a spinal cord injury doctor and paraplegic is doing research into the health of those with paralysis and if the ketogenic diet can help maintain people's health as they age with paralysis. He also believes the diet can help lessen chronic pain.
Remember, living with a spinal cord injury above anything else takes tenacity, stubbornness, and grit; another thing your doctor will likely not mention. Find that within you, and you can stay healthy for decades to come.
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Spinal Cord Team