DBS Benefits & Un-Benefits
 

I've been a member of this forum for a long time, but not usually a very active poster, esp. in recent years. But I've been thinking for a while that I should contribute what I have to say in hopes that it may be helpful to someone.

I was diagnosed with PD in 2007, but believe I had some of the symptoms for many years before. My worst symptoms were a huge tremor & an unusual & painful dyskinesia that drew my right leg upwards, leg muscle spasms so bad that at times I could not walk nor stand for more than a few minutes. Sinemet never did much for me & caused muscle spasms/dyskinesia, even at very low doses, within a year or so of taking it. I had to use a walker, stopped driving, & withdrew from my usual local PD group activities & classes (a mistake, of course), because I felt I had to focus on figuring out what in the world to do about my situation.

Over a year ago, I had bilateral STN DBS, in study for new Boston Scientific Vercise device, not Medtronic. Since then, I've had some very good moments, but also some very bad. We constantly struggle to get the device settings properly programmed, or maybe they actually are but the PD has just progressed, or maybe the surgery itself caused some problems. Would I do it again? Yes, because my extreme tremor & dyskinesia have both disappeared, and they really were intolerable. But the side effects are really bad, too: weight gain leading to serious diabetes problems, severe speech & language & swallowing problems, serious balance & walking problems, plus some possible cognitive effects, including word retrieval & fluency, all of which were excellent as tested before DBS. Negative effects on social functioning are very significant.

From my experience, I would have to say that DBS can be wonderful, but at this point in its development (it may improve in future), you should only consider it once your symptoms have become so bad that you can no longer tolerate them. You must decide that possible DBS side effects will not be even worse. Unfortunately, it's often a trade-off, you may lose some old symptoms & gain some new ones. If you decide it's still worth it, pick a good experienced surgeon, make sure there are good experienced programmers readily available to you, and remember that DBS works best for certain symptoms & not much or not at all for others. And remember: Exercise! I'm doing Rock Steady Boxing, learning to jump rope, & planning to resume PD yoga & dance. Good luck to us all!

Ooops! Thanks to Jeff for pointing out a typo, now corrected (diagnosed 2007, not 2017). Thanks Jeff!
Peony

Dbs
 

I had mine installed last October and after an initial getting adjusted phase I
Could function again where before I was a prisoner of my recliner frozen in place
Until my meds kicked in for an hour after waiting for two. The DBS turned out
better than expected. My neuropothy like pain was gone in my hands and legs and I could walk fine all day long that is until a month ago. The old me is coming back with my pain and leg muscles tightening up. I tried to adjust the
voltages but to no avail. My next appointment is on the tenth. Was taking
carbo lvo 50/200 cr four times daily with half a 25/100
Down from every two hours before DBS. Since this started I'm up to 5x daily.
It's almost is like it's not even on but it says it is and the battery takes a charge ok. Doctors can't help over the phone. Any help would be appreciated