 |
 |
My husband's neuro and nurse-practitioner told us that the DBS would cause problems with his speech, and that each time they were "adjusted," the problems would get worse. It's not just a "PD thing." It's very important for you to have speech therapy whenever the insurance will pay for it, so that you can retain communication skills. Bev cg David 71/59/31??? Delray Beach, FL ----- Original Message ----- From: "Davd L Moreland" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, April 12, 2007 8:11 AM Subject: Re: DBS SURGERY/Carol To: [log in to unmask] >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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn