[faithdude]

Hi!
I'm 37. I lived 36 years ok with just cp from birth that manifested via rightsided hemiplegia, hemiparesis, hemiballismos, ataxia, and spasticity.

I was ok enough with the severe disability. I got as high as a master's degree from Penn State and worked 15 years professionally as a certified counselor and lived on my own more than a decade.

Everything changed by end of 2004. I started losing walking ability. I started "freezing" up. I had doctors, unnamed only outta courtesy, that were pricks. They said your disability isn't progressive and it doesn't get worse. It must be "in your head, we won't give you medical testing". I fought with my health insurance and won second opinion. I got an emergency flight to a nearby state to my hometown mid 2005 to a physiatrist that's known me going on 20 years. 24 hours after landing I got needed medical tests. Less than 2 weeks later, I was told I had idiopathic avasacular necrosis. And, thanks to the unnamed pricks, it was too advanced, and the right hip had to be replaced.

Well, I was with fever going on a year by mid 2005, and with a daily fever of one year, they wouldn't operate right away. I got the fever controlled enough to get the ® total hip arthroplasty by September 2005. It didn't go well due to my spasticity.

I dislocated the hip 2 weeks later. I had a 2nd hip surgery 10/1/05. It didn't go well. I dislocated the hip again while still under due to severe spasticity. So they wheeled me back to the OR and did a 3rd hip surgery 10/1/05.

I ended up in 5 hospitals and 2 nursing homes during this timeframe. I ended up with decubitus ulcers and frozenness of my legs afterwards to where I had my right leg drawn up and so I had to draw my left leg up to it to give it support so I could go to sleep.

So, given my spasticity got severely worse, the worst it's been in 36 years, on 11/10/05 I had a 4th surgery, for baclofen pump implant. I'm not sure, but I get impression I'm sorry I ever got it.

I'm now 37 and, prior to the 4 surgeries, in 36 years I never dealt with collapse and drop and crumble of my right leg. NEVER. So, now I can't walk easily at all, literally. I was told I'd never walk again 12/14/05. I now walk 25 % of the time, with extreme difficulty and extreme pain. I now use a wheelchair first time in my life the other 75% of the time. Harsh and a nightmare given I only have my left hand to push it. I went in circles a lot when I first got the wheelchair.

Did the baclofen pump take away my beneficial spasticity that enables me to walk? I dropped the mcgs down to 210. I'm having a hard time dropping it lower, for now. The only other thing I can think of, is, the surgeon said I was so spastic for the 2nd and 3rd surgery, that he stated he sliced something near my private area, on the right side of the private area, so that the spasticity would drop enough that he could successfully do the surgery. What exactly did he slice? Is this slice/incision why I can't walk? Or is it the baclofen pump?

I now have walking dreams. Then I wake up. And realize all over again, that I pretty much now can't walk.

Faithdude

[Joed]

Hi Faithdude....

I don't have CP, but I can relate to your story somewhat. It's disheartening, to say the least, and scary when you've fought all your life to live an AB existence, and then have that ability taken away later in life. And add to that the suspicion that it may be a direct result of the surgeries that were supposed to improve our situations. Oh, and fighting with the health insurance companies....that's an added perk.

I have read other posts, either here or elsewhere, where people who have CP desired a certain level of spasticity in order to function. It may be worth asking the doctor about.

I'm sorry you're going through all this crap. It's pretty scary to think that a surgeon can just snip off whatever he sees fit at a time when you're unable to give any input or be informed.

I hope things improve for you. It sounds like you still have the good fight in ya....

Be Well~