Thanks, Ray. It's just that I know they can do better, with more education re: PROGRAMMING. It's like they have this magical device, but they are not quite sure how to use it... Carole Hercun --- rayilynlee <[log in to unmask]> wrote: > Carole, I am so sorry to hear you are having such trouble > getting > programmed. It is good, I think, that you posted your > experience. One list > member's mother had a bad experience - was knocked off > the table by a > programming jolt of juice. > > It certainly is no walk in the park. In order to have it > done twice, I > hoped I would die on the operating table. The discomfort > level of speaking > difficulty approaches pain. Just keeping my mouth shut > solves that one, but > it is hard to communicate because I can't write either. > However, I don't > know how I would have been able to live with those killer > tremors. > > We PWPs are stuck between a rock and a hard place. It is > not an easy > choice. We need better ones, for sure. > > Here's hoping they get you programmed correctly. And > soon, too. > > Ray > > Rayilyn Brown > Board Member AZNPF > Arizona Chapter National Parkinson's Foundation > [log in to unmask] > ----- Original Message ----- > From: "Carole Hercun" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Friday, January 04, 2008 6:20 AM > Subject: Re: DBS results/An Experience > > > > Ray, I keep reading all these wonderful > > > > DBS success stories, and while I am sure that the > patients > > are sincere and well-intentioned, I think it is > important > > to understand that it is no walk in the park. I thought > I > > was well prepared for my October of 2007 surgery. After > > all, I was an R.N., had attended a conference on the > > subject, met with a Medtronic rep, spoken in person to > > fellow PWP's who had had the operation, watched the > movie, > > and emailed trusted internet friends. I thought I was > > prepared. I wasn't. > > Oh, it wasn't what i was worried about- the head > shaving, > > the drilling through my skull, and the screwing in of > the > > halo apparatus. It was the little things- like the > weight > > of it as it held me pinned in one position like part of > > some butterfly collection while my back spasms > continued > > for hours, during the pre-and post-op MRI's and the > surgery > > itself. > > And the bigger things-like the programming that has > been > > going on for two months now, still with unsatisfactory > > success. The man from Medtronic, who make the > > neurotransformer, tells me there is no "book," and that > he > > services many of the major centers on the East Coast, > and > > that they "all do it differently." And that there are > > literally thousands of settings. > > In the meanwhile, as they tweak my settings yet again I > > know how Elsa Lancaster got that streak of white hair > in > > "The Bride of Frankenstein." > > In conclusion, let me say that I am not trying to > > discourage anyone from DBS. It is one of the newer > tools in > > our fight against Parkinson's and I believe you should > use > > any weapon you can get as you battle this monster. I > just > > want to inject a dose of realism into the mix. > > Carole Hercun > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > d > > > > > > > > > > > > > > > > > > > > > > > > --- rayilynlee <[log in to unmask]> wrote: > > > >> Parkinson's treatment inspires hope > >> SCOTT FONTAINE; [log in to unmask] > >> Published: January 3rd, 2008 01:00 AM > >> Every second of every day, battery packs embedded in > Rich > >> Hammermaster's > >> chest send pulses of electricity through wires > implanted > >> on the sides of his > >> neck to electrodes deep in his brain. The voltage of > the > >> electricity is > >> low - if a static spark of the same strength jumped > from > >> a door handle to > >> your hand, you wouldn't notice. > >> The treatment is called deep-brain stimulation, and > it's > >> been approved in > >> the United States for the past five years. > >> It's not a cure, but the technology - described as a > >> pacemaker for the > >> brain - has improved the lives of Hammermaster and > >> thousands of others with > >> Parkinson's disease. > >> "The first 15 minutes of your mornings are the > toughest > >> with Parkinson's," > >> said the Puyallup resident. "I had trouble getting out > of > >> bed. Since I've > >> had the surgery, I can get right out of bed. I can > turn > >> over and kick my > >> cover up. I couldn't do that without the volts." > >> Parkinson's disease is marked by a deterioration of > the > >> brain cells that > >> govern dopamine, the neurotransmitter that helps > regulate > >> neurons. When the > >> brain has insufficient dopamine, some neurons work > >> erratically. That leads > >> to stiffness and other motor-activity symptoms in > >> patients. > >> Deep-brain stimulation doesn't actually stimulate the > >> dopamine-producing > >> cells, said Peter Nora, a neurosurgeon at Swedish > Medical > >> Center in Seattle. > >> The electrodes quiet the cells. That's the general > >> concept of how the > >> surgery helps patients with Parkinson's. > >> The specifics are a bit fuzzier. > >> "The short explanation is nobody knows how it works or > >> why it works," said > >> Nora, who operated on Hammermaster and about 260 other > >> patients. "We take an > >> equation that's out of whack and restore it to > something > >> closer to normal > >> activity." > >> Doctors affix a frame to the skull to keep the head in > >> place, and a CT scan > >> is performed to target the location for the electrode: > a > >> 7-by-9-by-7-millimeter area. A hole is drilled in the > >> skull, and the surgeon > >> places the electrode in. The patient, still awake at > this > === message truncated === ____________________________________________________________________________________ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn