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u wrote: >Carol, I had 2 DBSs (one redo) in 2003. They really do help control tremor >and I understand that is a PD symptom most difficult to treat and one that >responds well to DBS. I believe I lost my voice because of the redo, but >it is hard to tell as that is also a PD symptom. All I know is that is when >I date my trouble speaking. It also got worse after raising the voltage on >my neurotransmitters. My hands are still like paws, writing is almost >impossible and I have difficulty walking. I don't take any PD meds as they >never helped me but once. My neurologist says my muscle tone is good and I >can get out of a chair fairly easily for someone with PD. I get botox shots >for the dystonia in my left leg. > >Some people have had all their symptoms alleviated by DBS, others have had >poor results. I was 67 when I had it done. Like so much with PD you don't >know until you try something, so it hard to tell how you would fare - having >a good team is essential, of course. > >I swore I would never have it, but when my tremors went bilateral I >changed my mind. Two years ago I fell 3 times, but my balance is a lot >better now. I had had PD 7 years when I had DBS. Although I'm glad I did >it, I don't see brain surgery while awake as a routine treatment. If you >google Rayilyn Brown you can probably find my story on CNN.com "I had brain >surgery while awake" or I can email it to you. My neurosurgeon and MDS were >at Scripps La Jolla, CA. I moved to AZ in 2004 and have a neuro who can >program the neurotransmitters, although he is not as skilled or >experienced >as the Scripps team. Good luck. Ray > >PS - I don't' see how it could be done without the iron halo. I tremored so >bad during surgery the whole bed shook. >----- Original Message ----- >From: "Carol Kerr" <[log in to unmask]> >To: <[log in to unmask]> >Sent: Friday, November 24, 2006 10:43 AM >Subject: DBS SURGERY > > >>I am considering having DBS surgery and am interested in hearing from >>anyone >>who has had it done. I am 54 uears old and have been dx for almost 5 >>uears. >>I have virtually no tremor, but have extreme stiffness, bradykinesia, and >>balance problems. I am falling about every other day. i take sinemet >>every four >>hrsl. (up from every 5 hrs six months ago ) . I feel it wearing off >>after >>about 3 1/2 hours now. I alaso take a cr at night. >> >>Some things I am intersted iin knowing >> if any of your symptoms were similar to mine what difference did it >>make? >> (also with relation to speech , nandwriting >> how involved has your neurologist been >> are there any other specialists on your "team" or that you wish you >>had >>involved >> anything you wish you had asked about before hand >> has anybody done it frameless >>Thanks for any input >>carol >> >>---------------------------------------------------------------------- >>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 > > > >-- >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.1.408 / Virus Database: 268.13.3/474 - Release Date: 10/13/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 269.5.2/766 - Release Date: 4/18/2007 7:39 AM ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn