Originally Posted by Peony

Soccertese, I wish you the best of luck. I had DBS a few months ago under the Boston Scientific study here in Northern California. I'm very glad I had DBS. The worst debilitating symptoms (huge tremor, severe & painful dystonia preventing walking, slowness, etc.) are gone. In many ways, I now look and act "normal" and walk, bathe & dress fast, stand upright, exercise, use computer, etc. It really feels like a miracle and I often just feel like a normal older person & can forget I have PD. However, I must add it was not easy. I had many very bad moments. The whole surgery process itself is not easy & has many risks (low, but not really known precisely since complete data are not available). Also, DBS is often, maybe always, a tradeoff. You lose some symptoms & gain others. There's no free lunch. Just one example: I now have new swallowing & speech problems that can be pretty bad & very scary. As programming has fine-tuned my device, I've gone through many different new symptoms, some of which (like balance & falling, extreme hyperactivity, etc.) have been strange, scary, & dangerous, but were ultimately resolved. For DBS, the most important things are to find a good surgeon (not easy to determine, see data comment above), get properly screened (not everyone benefits from DBS), inform yourself on DBS, have realistic expectations, be patient, and be persistent & practice good communication skills to insure optimal programming (don't let them shine you on & don't take no for an answer).

Just to clarify about the BS study (re: another post above), it actually isn't true that you aren't turned on (activated) for 6 months to a year in the BS study, at least not here, where it's somewhere between 2 weeks and 14 weeks. Not that different from non-study DBS, since current thinking is it's best to wait until all surgery effects are healed anyway. Here's how it works: My surgery was done in 2 phases in December 2015 & in January 2016, one surgery for each side. Two weeks after the 2nd surgery (Week 1 study visit), 75% of the participants are turned on. The other 25% are not turned on until the Week 12 study visit (14 weeks after 2nd surgery). All participants are "blinded" so you don't know which ones are activated until much later in the study. The possible advantages to the BS Vercise device are that there are more contact points on the leads, which means there may be more and better options for programming. That's what the study is all about. Device is already available in Europe.