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Cerebral Palsy Message Board


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Pain and cp
Sep 1, 2005
Hi my name is Fuchsia I am 23 and have spastic diplegic cerebral palsy. In the last few years I have been getting increasing pain in my shoulders, back, hips, knees, and feet. My Physio said there wasn't much she could do and sent me to see several orthotists who told me splints wouldn't help with the pain and that I would probably need surgery. I have since been to two orthopedic surgeons one told me that all I need was splints and physio, he made me feel like I was making a fuss and was wasting his time. The other was friendly but said I needed more physio and possibly botox. I find it all so frustrating as my physio and othrotists never seem to agree with the surgeons and no one can make up their mind what should happen next and in the mean time the pain is just getting worse. I feel that now I am an adult no one wants anything to do with me. Has any one had similar experiences?
Re: Pain and cp
Sep 6, 2005
Welcome Fuchsia!

I'm 24, with Spastic Diplegia as well. I've said this before but I'll say it again, many of us are at a loss for who to go to regarding CP issues that crop up in adult life. Usually there is a neat network of folks you or your parents can turn to as a kid, but I found that after I turned 19 I was on my own. I've tried botox once for increased tone in the calf muscle but I wasn't particularly impressed with the results... I went to another doc for the second round and he was just plain arrogant and cold.. This was at a large teaching hospital and I felt like I was in there for the demonstration rather than the treatment.. So here I am now looking for another orthopedic surgeon.

On the same note, I find that a physio who works on CP cases alone is tough to find... I used to see a general physio a couple of years ago and found that although her intent was good, she was generally unaware of specific issues (spastic muscles for instace) that go along with CP.

Usually surgery is a last resourt option. I few years ago I saw an orthopedic surgeon about a dropped arch and he shrugged it off and said it was fine. Apparently adults with CP don't make good candidates for surgery unless pain is a significant issue.

Since you've mentioned that you have pain in your hips and knees I'll assume that you're ambulatory. Do you use any aids to get around?

I use 2 canes to get around, what works well for me is to be as active as possible - but keeping my lower body workouts as low impact as possible. For instance, I used to do a lot of cardio on a treadmill, now I alternate between that and a stationary bike.. I find that the bike is a lot more "friendly" on the hips and knees.

It's important that you know your physical goals and do your homework as to what kinds of treatments etc. exist to help you achieve them.

Have you looked into oral baclofen as a treatment? I'd recommend this as a good start to try to relieve some spasticity.. I was on it for a while myself before I decided to go without.

Rest assured your not the only one in this battle. It's important that we speak out and become better advocates for ourselves.. If we don't then who will?

FS





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