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Hi
It sounds like you’ve been through quite a journey. I had a bit like a remission of my CD for about 4 years with no botox where my symptoms were much milder. When my symptoms returned severely after that I found it very difficult to deal with emotionally. After a long while I learned to accept that I will have periods of worsening and improving and to not expect my life to be so easy to predict unfortunately.
I am 50 now and my CD was diagnosed at age 33.
I am definitely aware that some anaesthetics can cause or worsen dystonia so I have learnt to warn doctors I have dystonia before they give me any medication. There is information about this on the internet (e.g. dystonia web pages).
I find the best way to manage my CD is botox and lifestyle management (keeping my activity and exercise level to a very modest level, no heavy lifting, working part time).
At certain times acupuncture and Bowen Therapy helped me.
I know some people have had success with DBS for CD but I am hoping I can manage without it.
It often has taken a number of years for botox to work well for me each time my symptoms have become more severe, but it does get there eventually for me, as long as I manage the lifestyle factors too.
