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I agree with Carole re DBS I swore I would never have it but ended up doing it twice. It's true it doesn't hurt, but is quite a daunting experience. my decision came when I started getting tremors on my right side. the left was always my big problem. it didn't help anything else, but I don't think I could have lived with those tremors. When they turned me off to redo my left brain the whole bed shook. I was 67 at the time and thought I'd better have it before I got too old. But remember I was only helped once, was 'on" with Sinemet, so if I had gotten some relief from meds I might not have done it. There have been some disasters though, so it is still very serious surgery Like Carole says, get the best people you can to do it. Ray ----- Original Message ----- From: "Carole K. Menser" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, April 07, 2005 2:30 PM Subject: Re: RE DBS/STN Sooner rather than later > Hello -- > This is a question that should be considered. Co-morbidity (the presence > of > other serious medical conditions/illnesses) is one of the major criteria > used to determine eligibility for DBS and how successful it might be. > While > it isn't always the case, many people develop other medical problems as > they > age. My feeling is that the point at which someone feels that they are > still doing fairly well managing their PD, but perhaps that may be > starting > to change, is the time to discuss DBS in earnest with their neurologist. > It > isn't an impossible surgery, but it is rigorous and anything is usually > easier to endure when a person is a bit younger and stronger. The rebound > time is less. We began the process a year ago and wish we had had the > surgery then. But due to circumstances with some of the medical > personnel, > it was delayed for about 9 months. Looking at it in hindsight, we would > opt > for having it even earlier than a year ago. > > We hear that the patients who had their surgery seven or eight years ago > during the trials and very early after DBS became more widely available > are > still doing well and still receiving benefits from it. This is good news. > A person with PD should probably consider how they may be doing in 7 or 8 > years without surgery as compared to with it --along with how old they > will > be at that time. DBS used to be considered a last resort to help people > with PD, and many who had it were in the later stages or not in very good > physical condition to begin with. But that thinking has changed radically > over the past few years. Now some of the thinking within the medical > community is that it may help younger people with PD who are still working > but feeling that they are getting to a point that work is becoming > difficult, so that they are able to continue to work longer. > > These are just a few thoughts on this subject. Everyone is different and > everyone must be assessed individually. We definitely would NOT advise > anyone to wait until a feeling of being desperate has taken over. As for > brave . . . well, it isn't all that painful but it is tiring. People > considering DBS should find the very best neurosurgical team that they > can. > > Kind regards, > Carole and Ted (57/45/40) -- bilateral DBS 2/05) > > > > ----- Original Message ----- > From: "Chandrashekhar Nagarkar" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Wednesday, April 06, 2005 6:01 PM > Subject: RE DBS/STN Sooner rather than later > > >> Dear Carole >> This note has been in my drafts folder for some time, but now I wish to > return to the subject and explore >> further, can you or any one else help me to understand how one makes a > choice to have this sooner option. >> I seems to me that you either have to be extraordinarily brave or > desperate. Or can someone else wiser more experienced guide you? >> >> I agree with your arguments re DBS sooner vs. later >> However my question is how do you gauge when it is soon enough and how do > you >> determine when it is too late? >> At 56 I feel if I wait too long will be degenerating from a near normal > state for 75% >> of the time (with medication) to who knows what outcome, perhaps not >> later > but never , given that only 15% >> have it. >> >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: > mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn >> Shekhar (57 nearly/50) UK >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn