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Old 05-31-2013, 07:01 PM   #1
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johnnaal HB User
Adult CP Individual in Confusion Right Now

Good evening, everyone. I'm new to the board....Trying to figure things out right now.

When I was about 3 1/2, I was diagnosed with left spastic hemiplegia (CP). Apparently, I never crawled. And, I didn't walk until I was about 1 1/2. I had to wear an orthotic for a while.

My foot wanted to walked outward and on the heel. So the orthotic got it with a little inward walk. They wanted to cut tendons and things. But, my parents said no. Over the years, my mother was my PT. Since my CP is only on the left side of my body, she would force me to use my left hand (as it was spastic to my chest) and played games with me that would make me use my left hand.

Eventually, I became as normal as possible. Never had any surgeries on my leg or hand. I've never had seizures, though I've been told there is a potential.

When I was diagnosed, there were no MRI's (70's).

I know tests were done because (other than remembering them), my mother was told that my brain damage was on the right side.

In between all of this, I graduated high school. I earned my bachelors, masters, and now my doctorate degree.


My concern is this....

When I was a teenager, I had to go through many bilateral TMJ surgeries (as a result of an injury). Each failed within 6 weeks of surgery. My mom and I went to neuro's. But, they couldn't determine if the spastic hemiplegia was having an effect.

If one side is weaker than the other, I just don't know what's going on with my muscles. Wouldn't one side be trying to overcompensate for the other side?


I ask this because, in 2010, I was diagnosed with cervical spondylosis. What's weird are no injuries resulted to cause this. Prior to the diagnosis, I would pass out, loose my vision and hearing. I got migraines constantly. Once the surgery was completed, those symptoms almost disappeared, because my migraines come (but less than before). My surgeon relayed that one of the arteries in the back of my head was not completely developed.


The surgery failed. Pins came out. I was told I was too active post surgery...which I know I wasn't.


I had the same surgery, again, within the year. I was completely a veg. I did nothing.

This one appears to have failed. I have had many xrays, MRI's and CT scans.....

Apparently, I suffered two strokes before I was born....surprised by that completely. There is some brain damage in my brain stem, which I never knew. I believe the xrays show pins out, again. I have done nothing.


What is even weirder is that now, my back is going through the same as my neck. I had to wear a brace again, for the first time in over 3 decades....and, had to use a cane to walk.

While the brace is gone, the pain in my left leg is crazy. My back feels extremely weak. I get pins and needles in my left leg and shooting pain in my hip and down the left leg.....


Trying to find a CP specialist that deals with adults....

But, wanted to see....have any of you heard of this...in one sided spastic hemiplegia....the muscles 'fighting' because one side is spastic? Could my CP be affecting my spine?


Sorry this is sooo long. But, any insight would be so appreciated.

Thank you.

 
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Old 08-25-2013, 06:11 PM   #2
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notaboutachair HB User
Re: Adult CP Individual in Confusion Right Now

I have yet to find a doctor who specializes in adult CP issues. From all my years doing PT, yes, uneven muscle tone will cause problems. but to speak to your issue more specifically -- I had serious orthopedic surgery when I was 13. One doctor recommended to do the procedure and follow up with casts. the other doctor recommended lots of hardware (plates and screws). we went with the later, and even then, one leg didn't heal due to cp-induced micro movements. Sucks.

 
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