SCI Awareness and Secondary Conditions

I remember early on in my spinal cord injury, one of my doctors said “You know, people with spinal cord injuries really have a pretty normal life expectancy that is comparable to everyone else!” Since I was already pretty traumatized and not sure I was going to even live another year, I thought, “WOW! That is wonderful news!! I think I might make it!!” Then he said, “It isn’t the spinal cord injury that can kill you, it is the secondary conditions.” Dejected, I immediately went back to my former thinking that death would be soon!”

As comical as that story is to me, there still is truth in it that you would be a fool to not be alert and attentive to. But…what are those secondary conditions that can get you? Let me list them for you (with a very brief description)…and if you are SUPER curious, I will add a link that will list more detailed information on each of these.

  • Autonomic Dysreflexia – this can happen to anyone with an injury level of T6 or higher. Any problems your body feels (shoes too tight, sitting on a wrinkle, mosquito bites (yep, really), bladder or bowels too full, or just anything where your body is uncomfortable but you cannot feel it….affects your autonomic system and it reacts. Bad headaches, goose bumps, sweating, breathing difficulties, spasms, stuffy nose, and the most scary is that your blood pressure can skyrocket to where you have a stroke or heart attack. It truly can be life and death to figure out what is going on with your body and get it feeling better so you don’t die.

 

  • Bowel and Bladder Management – this is unique to each individual how to maintain an efficient and healthy bathrooming program. Urinary tracy and kidney infections and bowel impactions can land you in the hospital very ill and lead to sepsis quickly. It takes time and a lot of trial and error and it doesn’t take much to throw it off, but this truly is an area that you cannot afford to be vigilant on because it can cause a LOT of long-term health complications that could lead to an early death.

 

  • Deep Vein Thrombosis (Blood Clots) – the lack of mobility and decreased circulation that comes from a lack of movement places us at a much higher risk of blood clots. Since many lack the pain sensation a blood clot would trigger, you must be vigilant and keep an eye on any unusual swelling or heated areas.

 

  • Respiratory – for those with higher levels of injury, the respiratory system is compromised. Some will require the use of a ventilator long term, but even those who don’t, are still compromised. Because your diaphragm, intercostal and abdominal muscles are paralyzed, it can be very difficult to inhale or exhale with much strength. Coughing, talking loud, and even breathing deep require much more work. For me, I cannot get the volume or hold a note very long at all anymore. I also get very dizzy from a lack of oxygen if I sing with everything I have. This all varies in strength according to each individual and their injury.

 

  • Skin Care (Pressure Sores) – Our body is layered….bone, which is wrapped in muscle, coated with a layer of fat and the all covered up with our skin. When your muscles are paralyzed, those muscles all shrivel away and what is now left is bone on a layer of fat covered by skin. Truly, the more fat layer you have, the more padding it does help to give you from bones killing off the blood supply to your skin which makes your tissue die, which is exactly what a pressure sore is. They begin with a red spot and can QUICKLY crater into a horrible mess…which means you are stuck in bed until it heals….which can take months and month. Being vigilant is an absolute in this area! Checking your skin daily is imperative to stay ahead of this.

 

  • Spasticity – Spasticity can be either stiffness or your body jumping around in spasms. Many times it will be a combination of both.This is another area that you must learn your body. It is absolutely affected by weather, stress, sickness, positioning of your body and can also be a sign you are having an autonomic dysreflexia episode. Increased spasticity can be a warning signal that something is wrong and you need to figure out what it is. (broken bone, pressure sore, UTI, etc.) Once my spascticity was horrible for about 3 days and I found out my left hip was completely out of socket. I felt no pain but my body let me know. It is important to know what your “normal” is so you will know when something else is going on.

 

  • Sepsis – Sepsis is deadly and one of the main killers of those of us with spinal cord injuries. Sepsis is blood poisoning from an infection most likely to come from UTI’s (which can be very bad before we even know we have them because we do not have the pain and symptoms others have), pressure sores (open wounds are very susceptible to infection anyway and pressure sores go all the way to the bone), and pneumonia (from a compromised respiratory system). It is better to go to the hospital for 10 false alarms then to mess with becoming septic.

I know this all can sounds terrifying, but this is the reality of having a spinal cord injury and the high risk we have of these other complications. Knowledge is power and it is better to arm yourself with what you know could be, so you can prepare so it will not be.

Thank you for learning!

Here is the promised link for more information:

Secondary Conditions Page from the Christopher and Dana Reeve Foundation

 

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