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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 :-) ********************************************************************