Patients Focal dystonia
Topic of the discussion
Posted on 3/17/19 10:47 PM
I currently do botox injections, but it seems like it is not as effective as it used to be. Still on my medications.
I was just wondering if anyone has had any experience and opinions with any of these surgical treatments: Deep brain stimulation or Selective denervation surgery?
What do you think? When would you say go for surgery?
I have fear of surgery as I have heard major complaints from people I know that had orthopedic surgeries either they were worse after surgery or the surgery went wrong... Again, they were talking about other surgeries. I do not know anyone who had these surgeries. Looking for help and or advice.
Beginning of the discussion - 3/17/19Deep brain stimulation? Selective denervation surgery? https://www.carenity.us/forum/focale-dystonia/treatments-for-focal-dystonia/deep-brain-stimulation-selective-denervation-s-852
Posted on 3/17/19 10:51 PM
Even if you have not personally had the surgery but know of someone... any information would be nice to have.
I have not talked this with my doctor because I really do not know if I need it or would do it... just looking for some tips/advice.
Posted on 4/28/19 4:40 AM
Never knew this even existed. The only research I could find was for cervical dystonia, but I would assume they could do others??? Do you know?
Seems risky... says there is a substantial risk of reinnervation and/or change in the pattern of the cervical dystonia.
Posted on 4/28/19 10:34 PM
@help11 I am not sure... I would think it could be done for any type of focal dystonia assuming the nerve supply can be denervated since that is what they do... they go at the nerve causing the issue from what I have read. Wish I knew the answer. I wish I knew about this but i may bring it up to my doctor though next time. He will probably dismiss it because he is very conservative. Just thought it was interesting read but there are things that could go wrong. The last thing I would want is to be worse off.
Posted on 5/20/19 10:31 PM
I’ve read that great results are achieved with denervation. I’ve become immune to Botox too. Worked great for 15 years. Right now I’m doing PT and dry needling. It definitely helps but so far not eliminated symptoms. If I don’t get to where I want to be I will definitely opt for the nerve surgery. Not the brain implant.