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Ivan, It sounds like he wasn't looking at the same person that we have been "seeing" over the past several years. Your freezing etc. sounds very much like what I was going through and the PD specialist in Chicago that I was seeing strongly supported my action in spite of the fact that it messed up the follow-up to his transplant study. I also am concerned when he states that the DBS is primarily for tremors. While that is certainly the approved use he appears not to have much faith in the NEJM which is published at Mass General his own institution.. He is being extremely conservative or knows something about the situation we don't know or thinks DBS is an esoteric procedure being done solely in Europe. Contact Dr. Kelly at NYU. He is a neurosurgeon skilled in DBS and I believe pallidotomy. Also, What does your neurologist say? He should be the first line between you and the surgeons giving a history which should present evidence supporting your position. Ivan, while we have had our differences over the past 2-3 years this time I think that you HAVE been screwed or at least under treated- with at least what I know about you. Charlie Ivan M Suzman wrote: > Dr. Growdon said that I'm too well for surgery. Despite all that we told > him about > my symptoms, we both (Michael, a personal care attendant and I) were > perplexed > by this 3rd opinion. > He said that pallidotomy is "out of the question" because it is primarily > for those > with dyskinesias. > He said that DBS is for "tremor control." > My problem- stiffness and severe offs, seemed to be not enough for him to > recommend > surgery. > He suggeseted contacting the European doctors because they are more > experienced > > Perplexed, > > Ivan and Michael > > On Thu, 24 Jun 1999 11:03:33 -0400 Ivan M Suzman <[log in to unmask]> > writes: > >^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > > Ivan Suzman 49/39/36 [log in to unmask] :-) > > Portland, Maine land of lighthouses 85 deg. F :-) > >******************************************************************** > >This evening at 5:00 I am going to be seen for the first time by Dr. > >Growden at Mass. General Hospital. I am looking forward to it. If any > >of his patients would like to talk to me on- or off-list, I would > >appreciate knowing your feelings about him as your physician. > >Although Tasmar has been helping me noticeably, I still have deep > >off-periods (although shorter and less frequent), and severe > >hypothermia. It is difficult to decide what to do. > > > >Boston Univ, has asked me to please consider a left-sided > >pallidotomy, > >but Rhode Island Hospital has said no, rather consider a bilateral > >DBS. > > > >So I need a 3rd opinion. > > > >I'm on Medicaid. > > > > > >Ivan :-) > > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > Ivan Suzman 49/39/36 [log in to unmask] :-) > Portland, Maine land of lighthouses deg. F :-) > ******************************************************************** -- ****************************************************************************************** Charles T. Meyer, M.D. Middleton (Madison), Wisconsin [log in to unmask] ******************************************************************************************