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Charles, I have your surgery on my wall to remember you on that date. I am so excited to be joined by others that need the surgery too. I pray and tthink of you through out your surgery. Please let me know how you are doing as soon as you can. x>Phil and others, > >I have wanted to put my 2 cents in this but have been busy. I have a >lot to say about this kind of surgery having been a participant. I >strongly support the concept and perhaps I will get a chance to write >more late. I have written an article for the upcoming PDF newsletter >which touches on it. But I do want to comment on your issues Phil. > >I think that the ethics of purposely doing a surgical procedure on a >patient and putting them at risk without the benefit of that accruing to >someone is questionable. In the case of the double blind placebo trials >while the benefit to the "sham" surgery recipients were as great if the >treatment group did not improve in quality of life and improvement of >symptoms than the placebo group then the study would indicate that fetal >cell transplants (at least done according to that protocol) are not >worth the risk of injecting foreign cells into one's brain. The fact >that the cells grow and develop connections is important scientifically >but means nothing therapeutically. The reason these studies were done is >to establish this one way or another. The value is to protect patients >from risk. The placebo effect is a byproduct. In clinical medicine it >should be utilized in the interest of the patient but not in a way that >increases risk. The little risk incurred as being a placebo patient in >the study is knowingly undertaken to either prove that the surgery has >value or prevent unnecessary procedures from being done in the future. > > I also think Kaplan- the Univ of Pa medical ethicist while getting a >lot of TV coverage in his opposition to "sham surgery" is dead wrong and >is disrespectful of our ability as patients to make an informed decision >as to whether we participate > >I have written much that I am not putting in this post but when the >issue comes up again- and I am sure it will I have a lot more to say. > >Personally, surgery (DBS- STN) is Tuesday May 18. (with the real thing >guaranteed). From the posts on the list it looks like I will be joining >a growing "club". Thanks especially to Jane Ross and the other pioneers >who participated in the early studies in DBS. Also thanks for all the >good wishes I have gotten from so many of you during the past couple of >weeks. > >I'll try and keep you informed, of my progress (I hope!) > >Charlie > >Phil Tompkins wrote: > >> I have a question about why placebo surgery is done for tissue >> transplants. I think there is something odd about the reasoning >> that is supposed to justify it. >> >> In the 20/20 TV program on PD transplant surgery, Dr. Timothy Johnson >> noted that "drug studies have already proved that patients with >> Parkinson's are very responsive to the placebo effect", apparently >> implying that the placebo effect is less in most other diseases. >> >> It would be useful to determine precisely why this is so. Perhaps >> having a progressively deteriorating condition for which there is no >> cure is itself the source of a nocebo (negative placebo) effect. If >> the baseline is negative to begin with, then of course the placebo >> effect would be greater. However, this is not my main point. >> >> In his next sentence, Dr. Johnson indicates that the great >> responsiveness of PWPs to the placebo effect is the reason for the >> placebo surgery. "So to avoid the possibility that the experimental >> surgery was simply causing a placebo effect, the doctors insisted >> that their new study compare real surgery with implants against fake >> surgery with no implants." >> >> I do not see how Dr. Johnson's statements justify placebo surgery for >> tissue transplants. The purpose of the tissue transplants is to >> replace those cells which are missing due to the disease, so as to >> re-introduce the function which the missing cells had. The success >> of the surgery ought to be measured by whether or not this purpose >> was achieved. Hugh Downs noted, "new cell growth has been seen only >> in patients who got the actual cells." How could it be otherwise? >> How could one expect tissue growth from tissue which has not been >> implanted? How, then, can placebo "non-transplant" surgery indicate >> whether or not the real transplants were successful? >> >> Phil Tompkins >> Hoboken NJ >> age 61/dx 1990 > >-- >******************************************************************************* >*********** > >Charles T. Meyer, M.D. >Middleton (Madison), Wisconsin >[log in to unmask] >******************************************************************************* >*********** > > > > >-- jjjane http://www.geocities.com/soho/village/6263/pienet/people/hithross.html