Re: Question on DBS STN generator implant

[JaneRoss <jjjane@xxxxxxxxxx>]

Margie,

Thanks for the tips.  I always appreciate them.  I have known about the
radio trick but for some reason it has never worked for me. My radios must
be to expensive!  LOL

I also never have had any trouble telling if it is ON.  But sometimes I
can't tell if it is off.

When I turn it on, it shocks me. I'm talking about a pretty good jolt.  It
lifts my right leg off the floor, it causes my right eye to wince and I
can't talk while it is turning on.

 It is strong enough that they had to use SOFT START which spreads out the
jolt over about 5 to 10 seconds. After this ordeal I feel great. and my
tremor is gone.  My left side is constant and I just leave it on all the
time.

You are probably asking, "why turn it off if it bothers you"?  Well the
strength wanes and if I leave it on over night the benefits are gone.

 Enough for now.
>Jane -
>
>Another question for you.  Can you always tell for sure whether the
>stimulator is off or on?  Dick had bilateral pallidal stimulations, and like
>many other pallidal stim patients, couldn't always tell whether he'd gotten
>his stimulator turned off or on.  I didn't know whether it would be more
>noticeable with the STN or not.
>
>One hint we picked up from the first patient in the US to have the pallidal
>stim (Dick was the third) was to buy a cheap transistor radio.  By turning
>the sound down as far as it will go and holding it up to his stimulators, he
>can tell by the static whether he's turned off or on.  The static is much
>louder when the stimulator is on.  If STN recipients also have trouble with
>this, the radio is an el-cheapo aid.
>
>For those who wonder what good DBS does if one can't tell if the stimulator
>is on - it just takes some time for the symptoms to show up when the
>stimulator is off.  Also, some-thing about having the electrodes in the brain
>keeps his symptoms from ever getting as bad as they were pre-surgery, even
>without meds and with the stimulator off.
>
>Margie Swindler


jjjane