Re: DBS info?

[rayilynlee <rayilynlee@xxxxxxx>]

Louis

I had 2 DBSs in 2003 (one was a redo) and they stopped my tremors and seem 
to have arrested my other symptopms where they were at that time, with the 
exception of making speaking extremly difficult.

Like witih most PD treatments there are mixed results, but I do believe that 
you can almost count on tremor being controlled (DBS is also used for 
essential tremor) if that is a major symptom and concern. If you don't  have 
tremor you might not want to consider it.

I don't take ANY PD meds, but Sinemet only worked ONCE anyway.  Many people 
report hey can reduce there meds.

No, you can't have an MRI or CPR.  I have not travelled since 1999, but I 
would guess airline security could be a problem because it could turn your 
neurotransmitters OFF.   With my added speaking difficulty, I would not look 
forward to explaining my condition to airline security personnel.

The major risk seems to be infection, although stroke is a possibility and 
even death, but I think the mortality rate is very low.  I beat the odds.  I 
did not get my life back, but life would have been unbearable without it.

Ray
Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
rbrown@xxxxxxxxx
----- Original Message ----- 
From: "Louis Steinberg" <lou@xxxxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Sunday, April 13, 2008 8:05 AM
Subject: DBS info?


> Hi all.  I am beginning to consider DBS surgery for my PD, and I am 
> wondering if anyone can point me to information on the plusses and 
> minuses of this treatment. I am particularly interested in
>  - probability of bad effects (e.g. stroke)
> - what symptoms are and are not improved
> - restrictions in what you can do because of the wiring (eg can you  take 
> an airplane flight?  get an mri? ..)
>
> Thanks for any pointers / personal experiences.
>
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