Cervical Dystonia

[JJJ160]

Hi everyone, I have had cervical dystonia for 30 years and been through many treatments.I wasn't diagnosed for 10 years and struggled on a daily basis, that was until I presented myself at the local hospital and received 1000 units of BOTOX.I had BOTOX injections for 10 years until it became ineffective.At this point I was house-bound with painful neck spasms so decided my only option to get out of this predicament was to see if I was a candidate for Deep Brain Stimulation.I was so had DBS Surgery 10 years ago and it was without regrets.My neck was in severe retrocollis before surgery and after surgery my neck was straight.However I still need medications for pain in my neck,shoulders and arms.

[Tricia33]

That is great to know DBS worked for you. I am waiting to see if this cervical dystonia is what I have.

[JJJ160 in reply to Tricia33]

Hi Tricia, just curious as to what your symptoms are?

[Tricia33 in reply to JJJ160]

Hi. I was told I had Meige syndrome a few years ago and I get Botox injections every 3 months (. Google it and it will explain) Now i have a shoulder and neck pain. My head jerks backwards and I have the shakes at times. I have had a MRI scan to see if they can see anything untoward. People on this site seem to have similar symptoms,so I wonder if I do have it. I am on no medication for it and I am getting very distressed. The neurologist i have not much faith in ,I don think she is a movement specialist,I am going to check.

[jhop]

There is a natural center in New Mexico run by Abigail brown for cervical dystonia but you should check with her as there were some warnings about effectiveness of program after surgery

[AlecB625]

Hi! Really glad it worked for you! I was put off it by a few things, one of them is that it takes months to work ( for some) and also it is only 50/50 chance of improvement. Also improvement may only be partial. Has your dystonia improved a lot and straight away after the surgery?