Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 04-01-2009, 02:30 PM #7
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Thank you all for your feedback - I really appreciate it!!

I had a Physical Therapy appointment today. The PT's arranged for me to see the Neuro PT and she is really nice. She examined my leg and said that I have a pretty bad case of fixed Dystonia and that there are lots of muscles in my foot that are spasming - not just one like we originally thought!!! It took the PT's half an hour just to get my leg to move a tiny bit!!

We didn't really get that many answers today. The PT's were both throwing ideas to eachother as to what might help and what wont. They suggested trying a splint with more pressure on one side to try and move my leg back into position but they didn't think that would help. They also mentioned castin my leg for a long time but said that they thought that would just make me worse as it would up my pain a lot and put me at risk of muscle damage and lesions (my skin is VERY thin so I break out in lesions pretty easily on my RSD legs).

The PT's mentioned Botox and I really think that is the route they will go down. My mum asked if the botox could potentially make me worse because both nerve blocks did and they said that they honestly didn't know but that it is really important that they do it correctly and that they dont hit a wrong muscle as it could just make me worse and I could end up with some pretty severe complications. They explained that it isn't a decision to take carefully and that we need to do a lot of thinking into it before we decide to go ahead with the procedure. They have only performed botox on upper body RSD dystonia's so they dont really know how I will react etc.

The PT's are going to talk to my Pain Management Doctor and we should hopefully have an answer when we go next as to whether they are going to try it or not. The PT's said that if they try the botox, they will probably admit me for 2 weeks to try and do lots of PT with me and that I would probably also need a Ketamine infusion as it will probably make my pain worse in the short term.

They also want me to try and get to PT more often so that they can try and do more work with me. It's really hard as my mums boss is being funny with her about time off so they are going to try and arrange for a medi-car for me and that way, my nanan can take me so my mum doesn't have to go all the time. They also suggested me getting PT at my GP's office but said that they would have to be real careful as its extremeley important that they know about RSD so that they dont create any more damage.

Debbie - I'm SO glad to hear that the Botox went well for you!! How are you doing now??? I really hope that you are getting some relief from the spasms and you are in my thoughts! Thanks for writing and letting me know how you got on!!!

Thanks again everyone and I will let you all know when we find anything else out!!
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