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Old 01-19-2015, 12:00 AM
Amster Amster is offline
Newly Joined
 
Join Date: Jan 2015
Location: Maryland
Posts: 1
8 yr Member
Amster Amster is offline
Newly Joined
 
Join Date: Jan 2015
Location: Maryland
Posts: 1
8 yr Member
Default Have cervical dystonia for 18 years and surgery for it ten years ago

You are going through what so many of us do. We all start out being treated with botox but if you get high doses, eventually antibodies are likely to develop. For some people it just doesn't seem to work at all. I had selective peripheral denervation ten years ago and my result was very good. My head was turned far to the right and slightly upward. However, I must tell you very honestly that this surgery will result in a drastic change to your physiology which creates a new set of problems you will need to adapt to. First of all, it is a major surgery requiring 8-9 hours in the operating room and a long, difficult recovery. There will be permanent numbness across the entire back of the head and a feeling a tightness. If you can adapt to and live with these issues then at least your head will be much straighter and you will be able to FUNCTION much more like you once did. It is a trade off. I don't think DBS (deep brain stimulation) is going to give as good of results, and I myself would not opt to have an electrode implanted in my brain. If the dystonia you have is below the moderate level, I would stick with pharmaceutical means like Klonopin to help abate it somewhat. If however, it is moderate to severe, surgery is an option that can really help, but tough to go through, recover from, and live with the consequences of it. You can also try finding another neurologist to see if he or she is more successful at treating you with other forms of botox you may have not received. If you want to discuss it further please contact me. Only too glad to help.
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