Dear Carol & Philip,
As a veteran of a staged bilateral pallidotomy (Aug '95 and Sept '96) performed by Dr.G. Rees Cosgrove of the MGH you might be on the lookout for a slight leaning on my part in favor of Pallidotomies, Dr. Cosgrove or the MGH.
I've also have continued on Tasmar despite the recent liver flap.
It is my understanding that the MGH has a rigorous protocol that each candidate must pass before the procedure is approved. In my day it was a committee of 3 who made the decision and the vote on my 2nd was 2 to 1 in favor.I doubt I would be approved today.One of the main reasons for turning candidates is that the "patient" hasn't tried such and such a medication or hasn't been at such a level for such and such a time. In other words MGH goes the full medication routine before considering other methods.I'm sure they are taking this Tasmar twist most seriously. Why they haven't pushed Carol
to give it a longer try is not for me to question. Does Carol have any liver problems or is there any history in her family?
The Tasmar "scare" is a bit weird. AS I understand it, if you test positive to the liver function test you are already dead. There is no early warning but perhaps I misunderstand. If I were Carol I think I would keep my options open by keeping my appointment on the books with MGH,give the Tasmar a chance and have the liver function test weekly.If it turns out that the Tasmar works great MGH will not do the Pallidotomy so you are saved making that decision, Then your problem will be your liver, ah, that is Carol's liver.
As for me I'm doing great or put another way, I doing as great as anyone with a serious chronic illness can be expected to do. The Pallidotomies did the trick for me including the total elimination of freezing,dyskinesia and off-periods.
And remember what ever decision you make will be the best decision for you.
My Best
george
At 12:03 PM 6/26/99 EDT, you wrote:
>Carol, my wife of almost 40 years, faces a very difficult decission and I
>sollict your input.
>I have been mostly, but not exclusively, lurking from the inception of this
>List. I have learned more about PD than I ever wanted to know, but also many
>useful things also as my wife, Carol's PD progressed. Again I ask for some
>timely input. (ASAP as u will c below.)
>Quick Background: Carol is 62, basically good health, X-cpt for...
>She is a young onset, symptoms mid to late 40's. Always a very active,
>driven person. We live in rural New England town, 3,500 popul. near
>Worcester, but with no public transportation. She has her driver's license,
>but has stopped driving.
>
>Her main problems are Freezing, OFF periods, and dyskinesia. We live in a
>125 year old Victorian 3 story house in the center of the town.
>The most serious thing facing us is that Carol's neurologists suggested that
>she see the MGH surgeon, Dr. Reese Cosgrove, and he strongly suggests a
>pallidotomy. (It would be done in the Fall.) It will be her decision and it
>is not clear or easy. (I ask that anyone who feels that they can contribute
>or constructively kibitz to do so as we prepare for next TUESDAY's app't with
>her neuro at Fallon HP.)
>An interesting spin occurred when Carol & I visited my sleep apnea doctor, a
>neuro, and when we were discussing things in my life that could cause stress
>- Carol's situation, including the potential pallidotomy, came up. He asked
>if we had considered Tasmar and when we said that we had and Carol had used
>it, but her neuro had taken her off it when the liver damage fatalities had
>come up. He said fine compared to another drug, but now we were comparing
>the Tasmar risk (which has apparently not continued with many patients using
>it under close liver function monitoring) to BRAIN SURGERY. He then backed
>off and said that he did not want too interfere in some other DR's area, but
>suggested that we rethink it and discuss it (the possibility of restarting
>Tasmar) with Carol's local (15 years) neuro who we are seeing next week.
>
>
