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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi everyone - I've been around for a while, but afraid I've not been very active here.

I guess my thread title says it all... I've had CRPS for nearly 13 years, full body for nearly four. I've also got very severe dystonia/contractures of both feet and ankles - to the extent that I'm mostly wheelchair bound. If I use crutches, it means taking weight on the top of my right foot and way up on the side of my left. I guess basically the CRPS has left me with acquired 'club feet' Some of you may well be in the same situation, though I really hope not :(

We've thrown everything at it - oral muscle relaxants, Botox, AFOs, serial casting. I've had a pump since '08- I had a good trial but I'm now on mega doses of intrathecal baclofen and while it helps the big cramps and spasms, it's not allowing any shift in my foot position.

My physio and I had a brief chat about surgery to try to correct the position - at least of of one foot. I saw my PM yesterday and asked what his thoughts were. His words were along the lines of I'm so fragile that it would be a total and utter disaster. The implication was I think that I'd be more likely to lose my leg than get a good outcome.

Has anyone with dystonia/deformity had corrective surgery? What was the outcome? Thanks so much for your time.

Laura





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