I have a fresh, 3 month old SCI which has currently left me a c6 quad.
2 weeks post-op I started experiencing instances of Autonomic Dysreflexia's accelerating high blood pressure- the condition that goes along w/coming off of the mysterious 'spinal shock'. Unfortunately, during rehab my instances of AD spiraled out of control, (despite my naturally LOW blood pressure) occurring daily, often 2-3 times per day. Often the cause was found - UTI, full bladder, bowel issues, etc. But MOST of the time, and even after countless exams, no cause was identified.. Often, tiny things like posture, sitting on my tailbone, having a ray of sun shine on my arm and even anxiety seemed to cause it. My neurologist said she had never seen someone w/such a sensitive autonomic nervous system. Perhaps being incredibly petite and small framed (90 lbs, 5'1) had something to do w/this sensitivity?
Anyway, point is, the horrific AD episodes have subsided, but my body's ability to regulate temperature is still out of whack. So every time I experience what seems like a 5 degree temperature change or more, I still do get AD! And this summer weather is no good for that, especially with my being mummified in TEDs, ace bandages and abdominal binder to keep my capricious pressure UP, yet leaving me a victim of overheating. I want to go outside! How long will it take for the sensitivity to temperature fluctuations to improve? Does it ever improve for c6 quads?? I don't want to suffer from any more AD, but I also don't want to become a hermit, with the skin tone of Dracula. Also, when will my BP improve? I can hardly get up in the morning without keeling over and passing out. Help! Advice? Comments?
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I want to go outside!
- By dsindc
- Posted May 13, 2009 at 3:45 pm · 7 replies
- In New paralysis/rehabilitation
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- By angelbrd67
- Posted May 13, 2009 at 11:41 pm
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Don't give up, and as for tempreture changes my son is a T injury The swelling started at T6 down to his conus?.. and he to has had episodes of AD and is in the ted hose and has issues with body tempreture. They put him on Neurontin this has taken the horrible heat flashes away ..But we live in Florida its been 90+ for days and he is misserable. His injury was on Feb 10th so he to is just a bit over 3 months out from his injury. The Dr's told us the first 6 months are kinda tough but once you get past the shock of all the things the body goes through with a SCI you become more aware of triggers and how to control your AD. One trigger that still gets my son is a silly little wrinkle in his shorts or his ted hose if they get just a little fold in them anywhere.
As for C-6 Quads. We have a person at Therapy who is brace walking with adaptive equipment so I do believe it can get better. I was utterly amazed at their ability to work with their impairments to make walking with braces possible.
My son has sugery tomorrow .. he had an AD attack in Philly .."Bladder Stones caused a very bad UTI" sometimes it just seems it never ends and then you have a moment that seems to wash the bad away.
Good Luck and we will say a prayer for you~!
Matt's Mom, Michelle
- By graybeard
- Posted May 14, 2009 at 9:55 am
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The ability to regulate body temp is really tough for quads. Not sweating below your injury makes it dificult to deal with heat and cold. Your injury is way new, and I am afraid this summer will be a tough one for you. If there is some shade to sit, or a way to have a fan blow on you, that would help. My first summer was miserable. And Im a T 7/8 inc. It takes time for the body to slowly adjust to this injury, and the first year was by far the worst. As a quad, your blood pressure will always be an issue. If you are able to regain some mobility, things will certainly improve. If not, then a standing frame, and if possible, some type of FES bike will help towards cardio and body health. Good luck, and keep positive. Things DO get better......
- By janders199
- Posted May 15, 2009 at 10:15 am
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I wish I knew and I wish I could help you. But Graybeard is right, things DO get better. My life has been a science experiment for the last three years, only changing one variable at a time. I am finally almost normal again (if there really is such a thing for people like us with SCI injuries). Hang in there, things will get better, I promise you. Keep the faith and God will do supernatural miracles in your life.
Jim
- By yeti
- Posted May 15, 2009 at 11:46 pm
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I'm a C/6 and can confirm your first summer won't be fun. I call my episodes 'hot flashes' and that's just what they feel like. My episodes eased by 18 months. I still have them but somehow knowing what they are and knowing they won't last makes them more bearable. I try to muscle through by not letting them win! My BP was also near perfect but I had to go on BP meds for a while. When I hit 22 months post injury everything seemed to improve in a hurry. I know its hard but keep smiling, it only gets better.
Bob
- By yeti
- Posted May 15, 2009 at 11:46 pm
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I'm a C/6 and can confirm your first summer won't be fun. I call my episodes 'hot flashes' and that's just what they feel like. My episodes eased by 18 months. I still have them but somehow knowing what they are and knowing they won't last makes them more bearable. I try to muscle through by not letting them win! My BP was also near perfect but I had to go on BP meds for a while. When I hit 22 months post injury everything seemed to improve in a hurry. I know its hard but keep smiling, it only gets better.
Bob
- By hangglide
- Posted May 29, 2009 at 12:36 am
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Just read your post. Its funny, but scarey how life just dangles by a thread. One person may jump hundreds of feet on his motorcycle and land unscathed, and another person just simplys falls and there's a life threatening situation.
Even though I have partial paralysis, I can understand your situation. My body has not been the same since my accident, but I'm getting better at ignoring the changes as time goes on. It sucks, but what else am I going to do?
Be patient. Hope. Be happy!
Pete
- By Brit2usa
- Posted May 29, 2009 at 12:12 pm
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As other's have said it is early in your injury and things will stabilize out more. As you had a burst no sever, did they say you are an incomplete? If so they may be a lot more gain in your capabilities. My husband could only move from the shoulders down, and after the 3 mth mark could do some weak ambulation with arm walking frame, now he is walking with a single arm crutch. Although he does still have some thermal regulation issues. He is currently in the NextStep (TM) program, and I believe the Kreiger institute out in Baltimore has a very aggressive program too, you can do outpt 2 week, and then they monitor you from home. THe more exercise you get the better the body is able to handle the intrinsic problems.
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