Thanks, Steve;
to have DBS done or not is a difficult decision. The exact placement of those leads is done with the aid of a computer and most patients seem to do quite well, but who can predict a successful outcome in each case? About your own condition, Steve: DBS will improve tremors and possibly other involuntary movements—that’s according to my neurologist—but I’m not so sure that it can reverse or slow down the progression of those other symptoms you described, but I’m certain that you would welcome any relief in whatever area.
Without a doubt, if you want to chance the DBS surgery I would suggest that your select the best neurosurgeon and even that is no absolute guaranty for success, but who knows, you may luck out. It seems to be a crap shoot. In my own case, it seems that DBS only served to tick off the disease, lol. About Harley’s experience: there is no excuse on part of the neurologist who had done the programming. Wow! you are describing the worst scenario I can imagine.
You take care of yourself, Steve. Thanks for your input. My best to you,
Jerry
Quote:
Originally Posted by stevem53
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
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