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Getting Used To Being In A Wheelchair Full Time

I have been a part time wheelchair user for several years due to scoliosis and chronic pain. Over the past year my condition has worsened and since January I have been using the chair full time. I've been diagnosed with spinal stenosis, as a complication of the spinal fusion surgery I had (twice; at age 18 and 28). I now have partial paralysis from the waist down, along with a number of added complications including incontinence. Surgery to relieve the stenosis might be possible but I've been warned that it's a temporary solution only.
bent65 bent65 46-50, M 1 Response Jul 28, 2012

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Hi, Bent65



Im new on the forum and out of all the places that may be of interest with pending surgeries and being challenged more than I like, I found this one, because I want to know if I dont do the surgeries that I can manage to be independent and have mobility...



Your post with scoliosis and having partial paralysis is kind of where I am and going... Ive had issues most upper spine cervical/thoracic heading into phase of neurocompression and stenosis (nerve damaged left arm/hand/fingers) and now my right arm/shoulder having rotator cuff ligament injury (motor vehicle accident) requiring surgery.



I cant face the surgery in shoulder and then the spinal 12 hr decompression of C-6/7 down into T-1/2/3 complex bridge, front and back approach = painful recovery more pain than what I live with = high risk I could be worse off



The latest bad scenario is priority slipping in for shoulder rotator cuff 2 ligaments torn off born and it degenerating worse to other parts of shoulder, if not surgically repaired and rehabbed in painful phys therapy = 1 yr min recovery - - thats my good arm . I could not have that surgery with a very disabled post-surgery arm in a lot of pain, unable to use the only good hand I have = living solo means in-home assist 6 mos. my guess



I am very against any more surgeries, I couldnt get my head wrapped around the spine complex surgery, hopefully to save my only good arm/hand (nerve damage/muscle atrophy process that my left arm/hand has), questionnable if they can, high risk I will be much worse off because of 4 levels above surgically fused & deteriorating + scoliosis of upper 2 levels when be next to collapse (cord & nerves for sure) = well in a few words,



after all that - - I haven't been warned as you say, but it's probably only a temporary solution to start with that 12 hour complex spine surgery & my thought is that puts me into painful chapters that may never stop





Im trying to say "no" to surgeries and say solution in my head is =wchair - - Im upper disabled candidate so it would be power chair - -



enuf shared

It was nice to connect with a brave Spiney who has made an important decision and a smart one to not do a surgery and being told its temporary



I am 63 with a spirit and passion in my heart as if I was 22 :) = joydancer

It is a hard decision at the best of times. I'm sorry that you're going through so much pain and difficulty - I hope they find a solution that works for you.