Boy, do I have a lot to learn!

While I've heard of dystonia and dyskinesia, I really never knew what they meant. I made the assumption that my curled toes and my foot pain are due to not wearing shoes with enough padding and/or arch support. So I bought some better shoes and my feet STILL hurt. Ugh! And my toes curl so much that I'm thinking of surgery. Has anyone had their toes operated on and straightened by using rods? I was told that it's less of a recovery if I have my middle toe amputated than it is to straighten the toes. Does anyone have experience with either of those surgeries?

Thanks, in advance, for all your help. This website is what's kept me sane for eleven years. It's made up of true, caring individuals who help each other.

Welcome to any newbies out there!

It may be different for you, but I find that my dystonia (curled toes, poor posture, cramps, back ache) is improved if I take more levodopa.

Fortunately I don't have dyskinesia. For those people who do, the solution is harder to find, because the increased dose may start the dyskinesia off.

John

Prouest M,
I will be checking in to Botox injections with neuro in a few weeks for my toe curling/dystonia. Supposed to be a 3-6 month fix. Will let you know if I do it, but I would check into this form of muscle relaxer before surgery. Hang in....

Eric

Dystonia is the involuntary muscle movements. Curled hand and foot, for years people always commented "it looks painful to write" It was, and still is. I hated writing checks out in the store, so glad to see ATM machines. I have never heard of Dystonia until I was seen for Parkinson's.

I had foot surgery to straighten my toes out. It was before a PD Dx, so not a clue what Dystonia was. I'd wear out shoes by walking on the outside back edge of my feet. Heel totally gone in that area, rest of the shoe was fine. Knee and back issues.

Foot surgery also corrected bunions, resection bones, tendon attachment, and inserted rods. It did allow me to use "three points" (big toe, little toe, heel on on the floor). So in that respect it helped, but in hindsight botox would have been much easier recovery rather than staying off my feet for six weeks.

Surgery was done a week apart. Left then right foot. Doc wanted me to be able to get up and around, hence off set. I asked why not wait three months, and his comment was I'd never come back for the other foot.

While it was a pain to have surgery done, and be off my feet for a few months, to me it was worth it. I don't wear out my heels anymore!

I suspect my feet where so curled after years of being pulled into claws that just botox would not have worked, but I'd still recommend trying botox first to get an idea how you are doing. Botox is only good for three months, or so, not a permanent solution and I seem to remember there is a long term use concern with botox. Something to discuss with your doctor.

Life's irony is my Dystonia responded to Sinemet. So when "on" I'm good. I'm looking forward to DBS as placement is to help both Parkinson's and Dystonia.

As others have said, the only thing that works for my left foot dystonia is levodopa. Fortunately for me, I only need a small amount (half of one 25/100 will last me about 5 hours). I have tried Botox for my neck and shoulder stiffness. It worked so-so. Takes a week or so to become effective and then lasted about 2 to 3 months. I won't do it in the neck anymore as I developed a serious swallowing issue until the drug wore off. It was really bad for a few weeks.