Thank You for your post..And Im sorry to hear that you had such a terrible experience with DBS

I had been bouncing the idea of having it done, because I have a low tolerance for the many quirks of this illness..ie; dyskenisia, dystonia, off time, freezing, stuttering, urine retention during dyskinesia..The only drug that works for me is Stalevo 200 mgs, and I cant tolerate more than 3 doses per day, because the 4th dose is nothing but 1 - 3 hours of dyskinesia, and nothing else I do seems to help..It's like there is an imaginary barrier that I cant cross, and if I happen to find something/anything/suppliments etc, that helps, it seems like this disease goes on a seek and destroy mission, and within a few days, it eliminates any benefits I reap from whatever the substance/suppliment I was taking was providing

I have seen some miracles from DBS, and Ive seen trainwrecks too..There is a woman in my support group who, like yourself was sensitive to meds, and she had DBS done 4 years post dx, and the surgery failed..They claimed the leads were in the wrong place, so she had it re-done by another surgeon, and now she is worse than when she started, and still has to take meds that she cant tolerate

I witnessed Harley, who is a member of this group, get..( for lack of a better word ).. "electricuted" during programing..Not once, but twice during the same session..That was one of the most horrible things Ive ever seen happen to someone

Most of the people in my area have had complications of one sort or another after DBS surgery during the past couple of years

I decided to table the idea of getting the surgery for the time being, and even more so after reading your posts