Hi Hans, Charlie, Renee ad Kevin,

Thank you everyone for your comments and help!

  I will try very hard to keep going as long as I can without surgery,
but it is also clear that Dr. Growdon did not know enough to advise me
about surgery, except to say that I am doing exceptionally well without
it.  He was very honest and cordial, but I myself might
have made a mistake by expecting that he would know more than he did.

"Exceptionally well" is hard to accept, because I  am so tired and always
battling.

I felt gloomy yesterday, to have made that difficult trip, and to not be
any clearer about what is best for me. Maybe I need some time to adjust.
Then hopefully I will feel more hopeful.

I am going to  try to talk to the people who attended Dr. Cook's
presentation at the Newton-Wellesley YOPD support group.   He apparently
spent 2 HOURS anwswering questions about DBS options.  He operated on
Michael J. Fox.

Right this moment I must stop and take medicines again, to avoid going
off into pain
and dystonia.
I guess I will end up having more opinions before I know how to proceed.

Meanwhile,
Thanks again everyone for sharing your ideas and for your support!

Ivan

On Fri, 25 Jun 1999 17:39:20 +0200 Hans van der Genugten
<[log in to unmask]> writes:
>-----Oorspronkelijk bericht-----
>Van: Ivan M Suzman <[log in to unmask]>
>Aan: [log in to unmask] <[log in to unmask]>
>Datum: vrijdag 25 juni 1999 3:57
>Onderwerp: Re: 3rd opinion
>
>
>Hi Ivan,
>
>>> pallidotomy is for those with dyskinesias. <<
>>> He said that DBS is for "tremor control." <<
>
>It seems to me this dr.'s reaction is rather peculiar.
>DBS primarily for tremor control is nonsens, because he should then
>have
>specified about which DBS he was talking. It gives IMO much confusion
>just
>calling it DBS. There are in general THREE DBS's to consider: DBS of
>the GPi
>(globus pallidus internus), DBS of the Thalamus, and DBS of the STN.
>And you can choose between the pallidotomy (with an irreversible
>laesion),
>the thalamotomy (with an irreversible laesion), or one of the
>(reversible)
>DBS's of these areas.
>
>>> My problem- stiffness and severe offs, seemed to be not enough for
>him to
>recommend surgery. He suggested contacting the European doctors
>because they
>are more experienced <<
>
>IMO he is disqualifying himself on this subject.
>
>I think you should consider asking the (4th) opinion from yet another
>doctor
>(hopefully more knowledgable).
>
>Hans.

^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
 Ivan Suzman        49/39/36       [log in to unmask]   :-)
 Portland, Maine    land of lighthouses           deg. F   :-)
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