 |
 |
Harvey I think it depends on what bothers you the most and how well meds control your symptomsl. In my case when my tremors went bilateral after 7 years of PD I changed my tune re DBS. I was 67 in 2003 and didn't really want to wait til I got any older for this surgery. I blame DBS for destroying my voice. As Greg Wasson points out this can happen and talking feels like strangulation......but nothing was worse than those tremors and unlike meds, it does control them well plus I don't take any PD meds. If meds had controlled my symptoms well, I don't think I would have considered it. Although I don't look forward to it (I even dread battery replacements) with pleasure, DBS is reversible should something better come along. Good luck whatever you decide, Ray ----- Original Message ----- From: "Greg Wasson" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, April 16, 2007 12:27 PM Subject: Re: DBS for early stage PD? > Harvey, > > I have had PD for 12+ years and although I have to use a countdown timer > watch to make sure I redose my sinemet and comtan every 2 and 1/2 hours to > make sure I don't turn into a statue for a few hours as I get back "on" if > I am late with a redose, I still am not seriously considering DBS yet. > That day may well come, but not yet. > > Yes, many lives have been measurably improved by DBS surgery. But I have > also known many persons to have had to undergo successive surgeries > because of infection, persons whose voices have been severely damaged by a > slight misplacement of the lead wires during the surgery, as well as > people for whom the benefits were minimal at best. Not to mention this is > surgery to the midbrain with one's head bolted to an operating table. > > I would also raise the question of why DBS is now being promoted so > heavily for early stage PD when it was originally promoted as an option to > be considered only when traditional PD medications had ceased to be > realiably effective. Just last night I saw an ad extolling DBS for PD on > television - the surgical version of the much criticised "direct to > patient" advertising by big Pharma for prescription drugs like lipitor and > celebrex and many others (including now Requip). > > I may be cynical, but I think it is important to realize that not only is > DBS a big and very profitable business these days, it is also a product > which clearly has a shelf life. That is, as encouraging clinical trials > continue for ceregene, spheramine, and other therapies that may soon > actually retard or reverse the progress of PD rather than merely mask > symptoms (which is as true for DBS brain surgery as it is for sinemet), > physicians and clinics and companies like Medtronic (which manufactures > the equipment used in the surgery) know that as soon as one of these new > therapies hits the market, the market for DBS will shrink faster than > shallow pool of water on a hot summer day. Market considerations drive the > promotion of any product, and DBS is nothing if not a product. And lest we > overestimate the purity of those in the medical and medical products > community, the recent scandal involving accusations of payoffs in the > millions to Doctors in Wisconsin by Medtronic sales > reps should serve as a sobering example that if Diogenes were still > wandering around looking for an honest man, he probably wouldn't start > with Hippocrates. > > For what it's worth, > > Greg > > > ----- Original Message ---- > From: H Rosenfeld <[log in to unmask]> > To: [log in to unmask] > Sent: Sunday, April 15, 2007 10:50:14 PM > Subject: DBS for early stage PD? > > > In the January, 2007 issue of Neurology contains a reference to the > application of DBS for early stage PD patients. > > Results of the study seem impressive: "Quality of life was improved > by 24% in surgical and 0% in nonsurgical patients (p < 0.05). After > 18 months, the severity of parkinsonian motor signs "off" medication, > levodopa-induced motor complications, and daily levodopa dose were > reduced by 69%, 83%, and 57% in operated patients and increased by > 29%, 15%, and 12% in the group with medical treatment only (p < > 0.001). Adverse events were mild or transient, and overall > psychiatric morbidity and anxiety improved in the surgical group. > > CONCLUSIONS: Subthalamic nucleus stimulation should be considered a > therapeutic option early in the course of Parkinson disease." > > I was diagnosed with PD five years ago. My current symptoms include > annoying tremors of my right hand and right foot which medications > control to some degree. My neurologist has suggested I consult with > another specialist about assessing the potential benefit of DBS. > Many on our list have benefited from DBS, but up to this point DBS > was only applied in later stage PD patients. I would like to reduce > the tremors but I am not thrilled with brain surgery when the > symptoms are annoying and not debilitating. Is the benefit worth the > risks? > > Harvey Rosenfeld > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > 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