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Cerebral Palsy Message Board


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Hi coletteb123,
I am 35 with "mild" spastic diplegia. Never had surgeries or knew I had CP until 4 yrs ago, when I started what turned out to be a series of 4 surgeries (last one this past Feb). on my R foot for spastic clubfoot.

Since that time, I've noticed my calf to be tightening more and more, extending behind the knee and into the hamstring. This is on the operative leg. In fact, I had my FDL lengthened in Nov 2000 as part of surgery 2 and had it relengthened in Feb 2003 since it retracted 5 cm. I had botox between and was active......still not sure why I tighten so easily.

My left leg is also getting tighter and there is a noticeable bend that no amount of stretching can hold straight for long. The odd thing is that when I was a baby, it was the left foot I had clubfoot with casting and now that foot is fine......go figure.

Lastramy and some others have had luck w. botox and it might be worth trying. Unfortunately, I cannot sing its praises from my experiences. I saw your mention of the pump and I never broached that subject w. my docs. My husband and I might start a family in the future so I don't want this obstacle hindering our chances. I've read posts of adults having luck with the pump although gait retraining is huge.

I've been having lots of issues w. hips and my calf/toes so I know where you are coming from in trying to identify best options. I am happy to be of more help if needed.....

Good luck!
Cheers,
Prisc1125
[QUOTE=prisc1125]Hi coletteb123,
I am 35 with "mild" spastic diplegia. Never had surgeries or knew I had CP until 4 yrs ago, when I started what turned out to be a series of 4 surgeries (last one this past Feb). on my R foot for spastic clubfoot.

Since that time, I've noticed my calf to be tightening more and more, extending behind the knee and into the hamstring. This is on the operative leg. In fact, I had my FDL lengthened in Nov 2000 as part of surgery 2 and had it relengthened in Feb 2003 since it retracted 5 cm. I had botox between and was active......still not sure why I tighten so easily.

My left leg is also getting tighter and there is a noticeable bend that no amount of stretching can hold straight for long. The odd thing is that when I was a baby, it was the left foot I had clubfoot with casting and now that foot is fine......go figure.

Lastramy and some others have had luck w. botox and it might be worth trying. Unfortunately, I cannot sing its praises from my experiences. I saw your mention of the pump and I never broached that subject w. my docs. My husband and I might start a family in the future so I don't want this obstacle hindering our chances. I've read posts of adults having luck with the pump although gait retraining is huge.

I've been having lots of issues w. hips and my calf/toes so I know where you are coming from in trying to identify best options. I am happy to be of more help if needed.....

Good luck!
Cheers,
Prisc1125[/QUOTE]

Hi, thanks for answering. May I ask what you did not like about botox?

My reasons for not wanting that pump that doctors seem to LOVE is that I don't want this big thing sticking out of my stomach (I am skinny so even more so) that needs maintenance forever and ever amen. Also, what I want so badly is to look better, less of a freak (yes I am hard on myself)--not having something else about me looking odd. I had a trial of it and felt so awful with the drug in my system--was numb and had no control over my legs at all. I couldn't walk at all; I was so upset looking across a room and feeling like it was such a huge distance to have to go.

Write back if you wish. Thanks again. -Me





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