Anyone who has Dystonia and is currently in remission
I would like anyone who is currently in remission or has been in remission with Dystonia in the past to respond to the following, please. I am curious as to what the process is/was like. Was remission due to a series of botox shots? Did it just happen sporadically? What criteria is used to determine (by doctors) that you are in remission. Is it less pulling, less spasms, etc. or do your symptoms have to be completely gone during that period of time? Please explain what you experienced.
Replies to This Discussion
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Permalink Reply by chyvonneb on -
Beka,
Hi! I was just curious as to why you stopped using the Botox and Myobloc after eight years. Did they stop working for you, or were you looking to relieve more of your symptoms(via DBS)?
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Permalink Reply by beka on -
Questions to ask about Neurosurgeons and DBS.doc
Botox only worked for me 6 times before I developed antibodies. Then my doc put me in the clinical trials for MyoBloc.. then another neuro dude swithched toxins on me without telling me and I developed antibodies to MyoBloc.. tried all the meds possible plus a few experimental ones, you name it I did it.. then finally went for DBS as I surely wasnt going to go on Disability and GIVE UP NURSING.
Another great group is http://health.groups.yahoo.com/group/DBSSurgery to look into... I find the DBS For Dystonia somewhat limited in replying to people's answers..Dr. Young and Roberta RN , the best DBS programmer out in California, help answer questions as do Ross, Roger and others..
That's just my personal opinion.
beka
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Permalink Reply by beka on
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Ambivalent about the entire DBS procedure and effects.. Think that Proramming has to be really fine tuned STILL.
Check out www.neuropace.com
Medtronic is not the only company making the DBS device , they now have competition and we , as pateints , have choices.
beka
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