 |
 |
I'm so sorry to hear the bad news. It is true being the 1 or 2 % really sucks. When I had my DBS in 2003 it had to be redone since the neurosurgeon was not happy with the placement of electrodes. Since then my voice has gotten worse and worse and all it helps is the tremors, but that is a lot and I consider myself lucky. I have never thought DBS would be a routine "treatment" for PD. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] ----- Original Message ----- From: "hunabku" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, December 05, 2008 3:33 PM Subject: Re: DBS UPdate > I am glad to hear of some good results with DBS. Unfortunately, I did not > experience that. Although I had a good team of Doctors at a first class > hospital, Queens in Honolulu, I did not have good results from my > surgery( ies ). I say surgeries because I had two extra ones that I did > not plan on having. The surgeon Dr, Michael Morrita, did not like the > placement of one of the electrodes so he went back in a week later to > correct it. He then went back in a week later because he did not like the > second placement. So all totaled, I had three surgeries in three weeks > time! > The results were not so good. Before, all I had was a tremor on my left > side. Afterwards, I could not walk or talk. It has now been over a year > since I had the surgeries and I have to use a walker in order to get > around and my speech is badly slurred. In other words the DBS took me from > the early symptoms of Parkinson's to the advanced stages of the disease in > a very short time. > The reason why I am telling my story is to make it clear that no matter > how proficient the Doctors or the hospital are, you are still taking a > big chance when dealing with the human brain. Be careful before > considering DBS. If I had it to do over, I would not choose the DBS. > Chris Cowing > Maui, Hawaii > > On Dec 4, 2008, at 6:05 AM, rayilynlee wrote: > >> Medicare and my secondary insurance from the school district paid >> everything. Good team at Scripps La Jolla CA altho Dr. Waltz is >> getting kind of old. >> Rayilyn Brown >> Director AZNPF >> Arizona Chapter National Parkinson Foundation >> [log in to unmask] >> ----- Original Message ----- From: "[log in to unmask]" >> <[log in to unmask]> >> To: <[log in to unmask]> >> Sent: Wednesday, December 03, 2008 12:16 PM >> Subject: Re: DBS UPdate >> >> >> It would be helpful if listmembers could compile a list of the medical >> centers that have a good track record for dBS surgery and screening - by >> country. >> Also if you are planning to have the surgery done out of your local area, >> what do you need to talk to your insurance company about? (especially >> those who are enrolled in HMOs.) How can you verify thtat it will be >> covered beforehand? >> Linda >> >> -- Black Charles <[log in to unmask]> wrote: >> This is a typical result from a good team. many do not have as good a >> result due to improper screening and poor surgery. I cannot emphasize >> the need to get to the best team you can access! There are about 20 >> qualified teams with good success rates. >> Brian; >> It is easy to forget how bad your PD is. Whwen your battery dies, it will >> be an eye-opening experience for you! >> >> For those of us who are maxxed out on meds, DBS is the only option we >> have. Properly done, it works and works well. It will turn the clock back >> on your symptoms 10 years. >> >> Charlie >> >> >> --- On Mon, 12/1/08, Nigel Harland <[log in to unmask]> wrote: >> >>> From: Nigel Harland <[log in to unmask]> >>> Subject: Re: DBS UPdate >>> To: [log in to unmask] >>> Date: Monday, December 1, 2008, 11:29 PM >>> Hello Brian, >>> Thanks for posting your DBS updates, it is >>> good to hear that it has been such a success, I just heard >>> yesterday that my DBS is scheduled for next February and >>> reading such positive comments is very encouraging, and >>> helps to allay my apprehension about the operation. >>> >>> Regards, >>> Nigel Harland. >>> ---------------------------------------------------------------------- >>> 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 >> > > ---------------------------------------------------------------------- > 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