HI.... Its My first time here.. I need alittle help fom my CP community. I am 22 years old. I am A spastic Di. I walk with nothing. most people think i just hurt myself. but to get this far I have had many operations ei in 1987Rhizotomy 3, hamstrings and aductors released 7, Quad releases 8, hip release 18, and osteotomies 20 which I had done because of really bad back pain, and removal for hardware 21.:dizzy: After the long recovery of the last operation my walking improved and they were going to discharge me from PT but then suddenly I became extremely loose. Like i didn't even have CP. i was kind of floppy, then The next week I became extremly tight. Tighter then ever before and cause bladder spasms causing me to have to void often and not being able to.
My ortho and my neuro think its a tethered cord or something from my Rhizo. They sent me for many many test. ranging from a simple x- ray to a myelogram. Since Nov my hamstrings are getting tighter and tight no matter what I do. As of right now they are causing me to have my knees bent while walking and Iam starting to trip some.
while attemping to figure out whats causing this, my doctors decided to send me to see my nuerosurgeon who performed my rhizo. He informed me that I should try botox and that my back looks fine. So maybe its just a CP thing! and because I was one of the first to have a rhizo I am at the frontline so inorder for this to possibly be considered the long term effects of a rhizo i have to wait for adleast 30 more poeple to experience the same.:mad: I forgot to mention there is only one girl that I know of that has the same nuerosurgeon, who has been experiencing the same problems for 7 years and became reliant on a wheelchair. she can walk but with trouble and have back pain.
On thursday I saw my ortho and he is giving me botox tomorrow and if it works by the 3rd wek in April. I wil have lengthing again. I really nervous. I know its for my own good. But really feel i need to find someone who has had a Rhizo and might have these problems. Iam thankful for the Rhizo and would recommend it. i would just like to know iam not alone.:confused:
So if you or someone u know is similar can you please contact me. As for botox how long did it help? and for lengthing as a adult do you have to wear the cast with the bar? thats what I remember as a kid.:confused:
thanks so much. sorry its so long!