Hi all,

After 12 years of being in my chair i was finally offered rehab at Stock Mandaville in 2006... just a little late!

My SCI was due to a tumor around my spinal cord, initially somewhere in the Lumbar region (can't recall exactly). I had this surgically removed and was walking within days BUT it came back a year later, couldn't operate again and it had spread further up the cord (T6) with small nodules noticeable even higher! I had radio therapy to destroy but this also damaged the spinal cord. Again i had physio for a year at a local hospital but didn't regain hardly any use of my legs. After a year i was pushed out the door in an NHS chair and left to get on with it!

I think being 18 at the time was a great advantage as i was a stubborn git and found ways to cope... i generated my own bladder/bowel routine, ways of transfering/dressing, finding out about social benefits (motability), etc and (after a few problems) it's all worked out great!

Any others out there who slipped through the Rehab "net" (as the Stoke doc suggested) and if so how did you cope?
I'd be interested to hear if this is a common occurrence or it was just my luck LOL

Cheers, Stevie

That sounds terrible! I am thankful I didnt slip through the rehab net I wouldnt have known where to turn!!

i fell though every net in my health care and treatment
i was never given physio or occupational thepray or mental health treatment for that matter, and that didnt happen till 2 years later when i was admited to a neuro rehab programme for 4 weeks at the national hospital for neurology in london.

which due to the delay i have drop foot in my left foot, which due to lack of physio i now wear an afo all the time it wasnt until that admission i got refered to my community neurological team which has, continane nurses, physios, OT's, and they have merged with the stroke team now so always avalaible

i fell though social services aswell, only got linked to a social worker year and half ago, that was only becuase i refered myself to go tot a day centre, and they needed a social worker referal.

have fallen through too many to even name, you are made to fight for what you need

Hi

My SCI is congenital, so rehab wasn't offered to me until I requested it. I had OT/PT come to my home and PT had to stop b/c when she pulled on my legs, I seized!!

Sooooo PT is OUT for me..permenatly. I'm glad u finally got the help that u wanted/needed.

Good luck!!