Can't find a neurologist

[Guest guest]

Hi, my name is Patsy and I'm 58 years old. I didn't even know I had tethered

cord until intense pain hit my hip and leg when I was 50. Two years after my

first detethering, I retethered and had a second surgery. Unfortunately, my

surgeon could not get the last two " rootlets " free without leaving me paralized.

(You know how they monitor the surgery as it goes along.) Of course, those last

two control my bowels and bladder, so those problems have just increased. A

couple years ago, my pain increased also, so I knew I had completely retethered.

Since the last surgery wasn't complete, I know there is no reason to try more

surgery. I have a neurostimulator for my hip and leg pain. In the last year,

the pain has spread to my back. I can't afford to take anymore time off work

for surgery for fear of losing my job. So, instead of another neurostimulator,

I also have a TENS unit for my back.

My problem is that I cannot find a neurologist that knows anything about long

term care or prognosis when surgery is not an option. Last year, I thought I

had found one, but all he did was put me through painful and unnecessary tests

that only confirmed that I had in fact retethered. I had explained to him

before I went to the first appointment that I didn't want him to " fix " me, just

tell me what I have to look forward to. He finally admitted he didn't know.

I live in southeast Michigan. I have tried Henry Ford Hospital system and even

wrote to the head of neurology at University of Michigan. These are two of the

best hospitals in the US, and neither one has a neurologist that can help me.

Has anyone had any luck finding a doctor that has experience with TCS?

I'm sorry this post is so long, but I would also like to know if anyone has gone

on disability with this condition.

Thanks for your time, Patsy