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My lead placement was to stop tremors. other placements are possible. some lucky people ae able to cut their meds in half. might be worth the trouble. gwc ----- Original Message ----- From: "Sandy Fliegelman" <[log in to unmask]> To: <[log in to unmask]> Sent: Tuesday, September 09, 2003 8:25 AM Subject: Re: New subscriber with question about DBS > Thanks, George. These are good things to know. Her leg strength is already > borderline for walking and she does not have tremors but instead freezes up. > The sinemet has helped for a long time but now, of course, after using it for a > long time, she has terrible dykinisia. Problems with balance were actually > some of the first symptoms she had before she was diagnosed. So to hear that > your leg strength and balance are actually worse is discouraging but good to > know, nevertheless. > > Thanks, > > Sandy > > George Campbell wrote: > > > My bilateral DBS 16 months ago has controlled terrible tremors quite well. > > But my over all pain is worse. Also, my balance and leg strength are not > > nearly as good as they were prior to DBS. There are several places where the > > electrodes can be placed, so maybe she could get some relief. DBS is not > > perfect. There are side effects. The surgery is a big deal. Follow up visits > > to adjust the units will likely take more time and money than planned. All > > total, DBS has been a lifegiver for me. > > > > People tend to love their DR. but with emotion not reason. The Neurologist > > should do only motion disorders. The Surgeon should do ONLY halo surgery. > > She should have a dedicated halo surgery room, surgery staff, and follow up > > staff. KNOW the real success rate. Some DR's do two are three halo > > surgeries per failure, some two or three hundred per failure. > > Be careful. The prestige and money surrounding DBS can be blinding to some > > DR's. They might be tempted to imply more than they can deliver. > > GWC > > > > --- Original Message ----- > > From: "Sandy Fliegelman" <[log in to unmask]> > > To: <[log in to unmask]> > > Sent: Monday, September 08, 2003 2:32 PM > > Subject: New subscriber with question about DBS > > > > > Hi, my name is Sandy. I am a new subscriber to this listserv and I have > > > a sister, Pat, who has had Parkinson's for over 20 years now, since she > > > was in her early 30s. She recently had a laminectamy to treat severe > > > sciatica that was the apparent result of one or more herniated discs in > > > her lower back. It's been several weeks since the surgery, she is in a > > > rehab center, and she is still having severe pain in her back with the > > > pain just recently (in the last 3-4 days) recurring in her affected > > > leg. She is in so much pain right now that they are giving her what > > > they say is the maximum amount of painkiller and she still can't fathom > > > sitting up or getting out of bed. (She was walking a bit just last > > > week.) I did some research on the Internet over the weekend and found > > > several articles that indicated that pain can be caused by Parkinson's > > > itself but that the mechanism by which it occurs are somewhat > > > mysterious. The articles also seem to indicate that the brain's > > > interpretation of pain signals may also be altered. The research into > > > pain led me into several articles on Deep Brain Stimulation. Some of > > > these articles indicate that DBS can help with the pain in addition to > > > restoring a great deal of lost functionality. My questions are as > > > follows: 1) Does anyone have knowledge or experience of DBS and it's > > > effects on pain, and 2) Can anyone give me advice as to how to find a > > > good Doctor and/or hospital to perform this procedure? (My sister and I > > > live near the city of Chicago in the state of Illinois in the USA). > > > > > > Thank you, > > > > > > Sandy > > > > > > ---------------------------------------------------------------------- > > > 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 > > ---------------------------------------------------------------------- > 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