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Cerebral Palsy Message Board

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I like my team of doctors and they have had great discussions with me. My foot ortho has really been a great support and has helped connect me with the right specialists. My endocrinologist is the same. Problem is, no one really knows what to make of certain things. I'm told that I am doing all the right things with exercise and that it is hard to tell what to expect. I saw a hip ortho in the fall and had an arthrogram MRI done because my hips were very painful and not responding to anything. He said any intervention he'd try would make matters worse. I've managed to compensate well and undoing that could incur more risk than benefit.
I did see a neurologist last fall and did not get from it what I expected, other than a new diagnosis of spastic diplegia vs hemiplegia. He said there was little he could do and thought I was too mild for botox (go figure!).
You are right -- adults are kinda on their own with this and it is frustrating. We don't have the typical hip problem where a certain protocol can be followed. So much is available to kids (which is great), but no one knows how to deal with adults, especially mild ones. (and each mild case is very unique!)
Also, I've had many PTs in the last four years and not one of them really knows much about treating CP. My recent PT, while good at typical ortho injuries, finally conceded that he rarely sees a case like mine. We have no way of telling whether I am progressing or what is "good enough." Really hard to gauge.

The botox peaked last May after 6 weeks and I got maybe 1 day of relief. The toes still curled and the calf began cramping later last year. I spent the better part of last year at various specialists and can honestly say that I am completely burnt out now. All of this parallel to looking for a new job and trying to change careers. Again, the teetering between managing the CP and "pretending" that I am normal with the stresses in life we all must face.

I just threw myself into researching CP and spasticity from the get-go and armed myself with as much knowledge of anatomy and physiology, esp with respect to CP and the foot. It also helped that my ortho had fellows and residents in the appts and I learned over and over again about my case so I had oppts to develop my knowledge. I established early on with the docs that I was very serious about getting through this all with maximum benefit. I went in with a positive attitude and maintained it throughout. It was important to me that I was considered a team member vs a "case" and this has gone a long way to getting the desired outcome.

Do you have foot issues as well? Or, is it mainly the hips/back/quads? I had that last June and went through a round of myofascial release therapy. I'd researched it and my doc encouraged me to try. Did not quite work for me but it has for others. Like you, I began having problems going a mile and my posture was awful. It is entirely possible that gait changes due to botox contributed. Also, I have a leg length discrepancy which contributed to the back pain (something to inquire about). My foot ortho noticed it and rx'd a lift in my shoe. Seems to have helped. The harsh weather change in September set off another round of hip pain. Then the past round of surgery and compensating with the left leg.

I guess the ticket is surrounding yourself with knowledgeable and resourceful people who are willing to go the distance. It took me about four years to find it and the rewards have been fabulous.

I cannot wait to get to biking outdoors again w. my husband. He got me a mt. bike for Christmas and it has been my motivator to recover!

Hang in!

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