May 12
3D , Posted on SUPPORT NETWORK Blog


I suffered a serious hemmorgagic stroke in 1984 at age 28.     Thirty- two years later I realize this makes the majority of my life --living as a physically CHALLENGED individual.  I prefer the term CHALLENGED instead of disabled or handicapped.  My surgeries include a tracheotomy, gastronomy ( feeding tube), a lumbar perriponeal shunt and the initial surgery for an arteriovenous malformation bleed.  (AVM)   I'm writing a book about my rehab events titled The Brain Train!

The symptoms are numerous a few being :  ataxia on right side ( fortunately I was a lefty) , strabismus    (double vision)  and dysarthic speech.   One symptom seems to worsen as I age :  heat intolerance ,  night sweats and fatigue .  I've been tested for andropause ( male menopause) but returned blood work negates this prognosis .   My question to other survivors- is this normal ?  I'm also looking for a temporary cooler rental situation for the summer as I've done this numerous times and can supply references.   Thanks!

  • brent
    Hi. I like your post very much. I relate to this very much. I was in a rollover accident and was ejected. I had whiplash really bad. I tore the inside of my left vertebral artery. The doctors failed to see the artery dissection from the scans. Blood ended up coagulating around the artery tear leading to a full ischemic stroke. I went into respiratory arrest, then slipped into a coma. I was on life support for six weeks. I too was left handed. I can barely move my left arm or leg. I now type with my right index finger. lost most of my vision in my left eye. What vision remains in my left eye creates double vision because my left eye is now out of alignment with my right. I cant walk well because my balance and equilibrium was severely affected. I also am basically chronically hot. (My neurologist said the part of my brain responsible for internal heat regulation was hurt. I don't know enough about the technical medical explanation.) BTW, I love the term challenged. I am very much challenged, but refuse to accept being considered disabled.
  • Trina721
    Hi ! I'm Trina and I've had many strokes for the same exact reason, mine started in high school and I'm in my fifths now, yep fatigue has definitely increased with age, but I don't and never had, the heat issue, in fact I'm actually cold a lot! Sure does sound hormonal, but I'm not a doc! Nice to meet you!
  • One With the Fish
    One With the Fish,
    Hi, Thanks for sharing your story. I too have problems with my body adjusting to a change in temperatures. I can get very hot or freezing cold quickly and it seems to take a long time for my body to adjust. My history: Up till age 50 great health, athletic, active, non-smoker, ideal weight, non-drinker and moderate stress. Age 51 - Stage 4 throat cancer. Went through chemo, radiation and surgeries, 31 days in hospital, discharged with "Terminal" status. Eight months later Another tumor had to be removed. Age 53 - Hit head on by out of control logging truck near Yosemite. Trapped in car two hours, unconscious 8 hours. Major concussion, head trauma left front, multiple broken bones left side and 5 fractured vertebrae. Unable to articulate speech, lost motor skills and co-ordination of right hand, severe tremors, 80% numbness of left side of body. Severe constant pain from fractures pressing on nerve canal. Went through several "pain relieving" procedures on back. Finally got partial pain relief through two laser spine procedures. Age 64 - A lot of hard work and therapy the last 11 years have resulted in me being able to return to a sort of normal life. Then suffered two strokes ( blood clots) in February of this year (2016). Survived the strokes with minimal problems - a return of some of the numbness, co-ordination and balance problems associated with the previous car crash injuries. The cancer has been in remission since the car crash. So, yes I do have problems with being excessively hot or cold at times. Even if outside temperature is fine. Doctors don't have an answer. QUESTION FOR OTHERS? I have been tying to figure out why I had the strokes and what I can do to prevent another. My doctors seem to discount the possible effects of radiation damage to my arteries as a possible contributing factor in my stokes. My blood counts are very good, low cholesterol. I am 5' 10" and weigh 170. Heart is in good shape and normal. Anyone else have similar thoughts? Thank you, Jack
  • Billkeck
    God bless you who still suffer physical effects from your stroke. Actually I do also have some lingering effects 47 years after my stroke at age 23, totally paralyzed on my right side. I mean total, could not walk, talk, see, feel, or move anything on my right side. I am 70 now. Sometimes I almost feel guilty but should not. I should and do feel grateful everyday. I do feel for each of you. How and why God spared me from debilitating effects I do not know. You guys make me more grateful every time I hear your stories. How people can bicker over minor issues amazes me. My stroke has made me stronger.
  • Paige
    You are here and alive that is the number 1 concern. I live in a little town called Bisbee, AZ and it is a mile high and the summers are nice. In July and August it rains most afternoons. Go on the internet and check it out. A quiet little town righ on the border with Mexico.
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active