On another thread, a reader asked the question : I started this thread to keep that one more OT, but the question is legitimate and one I think we should answer as PWPs communicating with the world around us. I gave the short answer "for most cases: because DBS is not a cure and can do its own harm."

Good topic! Answers?

Thanks for this thread Jaye. My new neuro was pushing DBS for me again just last week. I have the same problem with it that you do. He did tell me though that the amount of medication I'm now taking is becoming increasingly risky for seirous side effects. I'm still up in the air about this.

Mary

DBS has become a much more reliable and successful surgery, but it comes with very high risks. I know many people who look great and feel great with DBS and I know others who don't.

My neuros have suggested DBS, but I would rather hold out for something neuro-restorative if possible. Understanding that this might not be possible, it still remains my "risk of choice" so to speak.

It's a perfectly understandable question!

paula

I guess most of us try to avoid becoming "bionic" as long as possible, and find the thought of a wired brain and a battery pack in our abdomen a little disturbing. I, too, thought that new treatment breakthroughs were around the corner, but it must have been another corner in a far away land...

I'm getting to the point right now when my dyskinesias are almost always present and it's going to be either that or I stop eating altogether to avoid them. So I'm certainly going to have DBS surgery before long, and in fact I'm almost looking forward to it.

I'm nowhere near being a candidate for DBS but have given it some thought, as I've recently met a number of younger patients who have already chosen to go that route. Some have had success while others didn't get the greatest results.

As Teretxu says, having the thought of wires and battery packs in me to function is a little disturbing. (Unless of course, it could make me superhuman. I always thought being able to fly would be cool!) I'm just bothered that some people think that DBS is a cure and rush to the nearest surgeon to get it done.

I would hope that the first choice would be to really analyze the meds you're on to insure you're optimizing them as best as possible. Too many times, I hear stories of more meds being poured on as opposed to trying to find that delicate balance that we all require. More is not always better.

I am thankful that an option like DBS exists for those that really need it. And I'm hoping that science finds something that dramatically extends the working time of our current meds, or finds something neuroprotective before we all feel like we need to rush to have to holes drilled in our skull.

It's a big decision and I hope that people make it out of honest evaluation of their own personal situation and not out of pure desperation.

Todd
PDTalks.com

Ive been a lurker / reader here for while and thought I should contribute my thoughts to the discussion.

While Im new to posting, I am not new to Pd.Having been dx'd in 1996, I was started on Sinemet from day 1 until I had DBS in March 05- no sinemet since that day.

DBS is NOT a cure and yes it does have risk. but it's the best available option for us,while we wait - for the cure, and our meds to work.I am very grateful that DBS has given me the opportunity to endure the wait for a cure without sinemet, dyskinesia or the off periods that dominated my life before March 2005

Cate

I'd rather starve to death! I just don't believe I could do it. There is a reason for everything. We are walking chemical factories:hormones, oxidents, blood sugar levels etc. etc. etc. stress. I'll probably lose my mind before It's over. But DBS sounds barbaric! Time for sleep, the great restorer. Maybe I'll be more open minded in the morning.

Its a long way off for me..I hope..But it doesnt sound like something Id want to do either..But there comes a time where the pain must outweigh the pleasure, and at that time I could see myself entertaining the idea..I dont know how one feels when they get to that point, but I would imaging that there is more fear in living without DBS, than the actual going through the medical procedure

At this point in time, I am not a candidate for DBS. My symptoms are being adequately controlled with Sinemet. I know at some point the Sinemet will quit working and I will become a candidate. At that time I will have to look at all the options available to me. If DBS is the best option for me then that’s what will be done.

GregD

Welcome Cate! Great you decided to join us! There are several people in this forum who've had DBS surgery and are very happy with the results, just like you. It's nice to hear your positive testimonies, that way the proverbial light at the end of the tunnel remains lit for many of us. Why despair when you know that most symptons will effectually disappear with a little help from a couple of electrodes wired to a battery pack?
I just wonder though...why couldn't they make it wireless?

Take care
Teresa