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

Your Response


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.