Re: DBS SURVEY
1. I'm 57 years old, female, and have had Parkinson's for 21
years.
2. I had DBS STN for mostly tremor, bilaterally.
3. It will be 4 years this coming March 8th.
4. Both sides were implanted at the same time but it wasn't
until 8
days later that the stimulators were placed under the skin
5. Yes I had swelling in the hollows under my eyes. They
turned the ugliest yellow from fluids in my head.
6. I was an experimental patient and they turned the stimulators
on externally on the third day then permanently after the first
week.
7. I could feel them in some settings immediately others
nothing. I
don't think they realized that it could take more than a few
seconds. I feel they changed them WAY TOO FAST.
8. 2 years. It wasn't until I went to NIH to be
studied that they found an optimal setting.
9. 3-4 Volts
10. When ever I called they would be happy to try a new
setting. I was committed to their program for one year after
the surgery. It included 3 or 4 visits.
11. I am still feeling changes from having my battery changed in
September 1999. I continue to improve, as gradual as my
Parkinson's progressed, I now improve. Today for the first time
I signed my name at a credit card purchase.
12. no, emotional changes
13. Yes, I have reduced my meds. I no longer take any
Sinemet and the Mirapex came out on the market since my surgery. I
now take 1 mg of Mirapex twice a day.
14. I never was a runner but I exercise daily.
15. Before I had my battery changed, it was set in a better mode
than it is now, but to go get this changed would be 300 miles
for a petty little fine tuning. Yes in some cases I would
recommend it.
16. Like Charles I feel your survey has a positive flavor to it.
I now have slurred speech, dystonia in toes of my left foot. On the
other hand I now sleep 9 hours a night instead of 2-4 hours.
>The following DBS survey is addressed to members of the list
who have
>undergone DBS surgery and is intended to help those of us who
have
>undergone the procedure and help others who contemplate having it
done. In
>the interest of brevity merely identify the question you are
answering by
>number.
>
>(1) what is your age, sex and how long have you had PD?
>(2) for what symptoms did you have DBS surgery?
>(3) how long has it been since you had DBS surgery?
>(4) was your procedure done in stages or all at once?
>(5) did you have and visible signs of swelling after the
surgery?
>(6) how long after the surgery were your stimulators (stims)
turned on?
>(7) how long after the stims were turned on did you notice an
effect?
>(8) how long after the stims were turned on did you
notice the optimal
>effect?
>(9) if you know, what is the current voltage setting of your
stims?
>(10) what was the interval between a change of voltage setting in
your
>stim?
>(11) how long after a change in the voltage could you feel
the impact of
>the change?
>(12)have you noticed any emotional changes since the
procedure?
>(13)have you been able to reduce your meds since the surgery (if
so by
>approximately what percentage)?
>(14)if you could not run prior to the surgery can you run now?
>(15)on balance are you pleased with the results and would you
recommend it
>to others?
>(16) other comments?
>
>
>your participation is sincerely appreciated
>
>Tom Riess
jjjane
http://www.geocities.com/soho/village/6263/pienet/hithgang/hitjaner.html
