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Dear Parkinson's Disease Listmembers: As people reading this List have undoubtedly observed, there has been a lively exchange going on here regarding pallidotomy and other surgical treatments for PD; and, the other day, I was subjected to a "flame" for some of my posts regarding my continuing skepticism regarding the enthusiasm over pallidotomy. May I state here, quite positively, that I have had direct e-mail correspondence with Barbara Yacos regarding the misunderstanding which had existed between us, and we have both agreed that it is far more productive to debate these important issues without resorting to personal attack. I am satisfied that Barbara and I have re-established an atmosphere of good will and the matter of the "flame", for me, is closed. I also appreciate the notes of support from other Listmembers and acknowledge same. In my personal exchange with Barbara, I sent her the original letter which I had sent to Mr. Stipp (the reporter who wrote the Wall Street Journal article of last week), and pointed out how my use of the words "snake oil" (and I did write them) were taken out of context. I am hereby posting the full text of that letter from me below; the only change was the removal of Don Berns' name from the posting, as I did not wish to be in violation of Dr. Berns' privacy, either (compromise of patient privacy is one of my major concerns in this entire issue). I had, however, used Dr. Berns' name in the letter to Mr. Stipp, because Mr. Stipp had apparently already contacted Don and knew of his opinions when he talked to me. The letter to Mr. Stipp follows below: ---------------------------------------------------------------- TO: David Stipp <[log in to unmask]> RE: Pallidotomy Dear David: I am a neurosurgeon who has been active on the Parkinson's Disease List, and I have become involved in the ongoing debate on pallidotomy. I did pallidotomies back in the sixties while I was a resident at the University of Chicago, this during the era when this kind of surgery (including thalamotomy, which was done more specifically for tremor) was quite popular. In the late sixties, two things happened which markedly decreased the usage of this type of surgery; one was the failure, after much hoopla, of Margaret Bourke-White's operation; and later, the discovery of L- DOPA by Cotzias, which revolutionized the treatment of Parkinson's at that time. Bourke-White, a LIFE magazine photographer (and Pulitzer winner, I think), had a dramatic result for her tremor when operated by Irving Cooper in New York; but several years later, the disease advanced, and she died after becoming an invalid. The problems with the Parkinson's surgery back in the sixties was that those earlier operations seemed to reduce, sometimes dramatically, the tremor, but had less effect on the rigidity that is associated with PD, and had almost no effect on the "slowness" that is characteristic of the disease in the later stages. The beneficial effects of the surgery, also diminished with time. By the mid- seventies, almost nobody was doing PD surgery anymore. A few years ago, a Swedish surgeon (Lauri Laitinen, M. D.) resurrected the operation (as done by a now-deceased Swedish colleague, Lars Leksell, M. D.), and added some newer technology to same. Laitinen has published a few articles reporting some improvement in the rigidity and slowness problems (he went back to the globus pallidus as the site for the lesion), and a number of other neurosurgeons, some in the USA, have started to do the operation again (I, personally do not). The results of this new work, as published in the scientific literature (and I have searched such), are still somewhat equivocal, especially as to the *length of time* that the beneficial effects last; and, in my opinion, it is too soon to call the present-day work with pallidotomy more than "experimental". For certain patients, there may be a role for this approach, especially since the drug therapy of PD also seems to lose its beneficial effects with time. The way that I got involved with this debate was when, on the Parkinson List, a man named XXXX, from Southern California, began making posts there extolling the pallidotomy operation (he has had one). His posts were almost "testimonial" and full of what was almost "religious zeal", this as it pertained to a program going on at Loma Linda University in Southern California, this program being directed by Robert Iacono, M. D., a neurosurgeon there. I did not object to the program in any way; but I was highly disturbed at Mr. XXXXX's posts (because of their, IMHO, unrealistic optimism) to a group made up of people with a chronic and disabling disease; and this debate, including some personal and direct correspondence between myself and Mr. XXXXX, has become somewhat heated. I have written directly to Dr. Iacono (as a colleague) to ask whether he is aware of the "testimonializing" of one of his patients, and I have not yet received a response. There are exchanges going on in the Parkinson's List from as far away as Israel (from family members of severely disabled people with PD), and it almost sounds like "snake oil", especially in view of what I think is a premature endorsement based on what actually does appear in the medical literature. Recently, I have taken up this problem with several other neurosurgical colleagues, many of whom share my views (that the research being done by Dr. Iacono at Loma Linda and elsewhere is worthwhile but not "proven" yet); and I refer you to Patrick J. Kelly, M. D., Professor of Neurological Surgery and Chairman of the Department at NYU Medical School in New York City. Dr. Kelly does pallidotomies and believes that the surgery may be useful in selected cases, but he shares my skepticism and concern over the "testimonializing" that has recently been going on. I would suggest that you may wish to contact Dr. Kelly and discuss the situation with him, this to get a reasoned approach to a complex problem. Dr. Kelly's e-mail address is: <[log in to unmask]>, and you can use my name when you write to him. If you wish, you can feel free to correspond further with me (see my "sig" at the end of this message); but I think that you will get more information about the current "state of the art" in Parkinson's surgery from Dr. Kelly. I would very much appreciate receiving a copy of your article when it is completed. Thank you for your interest. Best wishes, Robert A. Fink, M. D. ------------------------------------------------------------------------ ---- I hope that the Listmembers can see that my concerns regarding pallidotomy are in no way intended to cast aspersions on any of the people researching this procedure; but are mainly an attempt on my part to, as another correspondent to this List said yesterday, maintain a healthy level of skepticism for any new procedure. Yesterday, Alan Bonander posted a long message which also contained some items which could be interpreted as personal aspersions on me. I will not respond in kind, because, as I wrote to Barbara, I do not feel that this approach is productive. Alan, however, has asked some challenging questions, and I shall attempt to respond to such. Alan (and Don before him) suggested that I "do not know anything" about pallidotomy. Alan goes on to inquire as to my "statistics" from the days when I did pallidotomies, and further suggests that my neurosurgical work today may not be optimal. To these allegations I must answer that my pallidotomy experience was during the time between 1962-66, when I was a resident in training at the University of Chicago Hospitals, a major neurosurgical center, and where the Professor, Dr. John F. Mullan (now retired), was engaged in clinical research on stereotactic surgery for movement disorders. Dr. Mullan developed a new technique (since abandoned for a better method) of creating lesions using a radioactive needle; and a number of papers were written during the mid and late sixties on the University of Chicago experience with stereotactic surgery for movement disorders (we treated patients with dystonia, cerebral palsy, and other conditions as well as people with PD). My experience in doing pallidotomy was as a resident; and, when I completed my training, and my military service (ended 1969), surgery for PD was no longer in favor, and I have not done any such procedures since. I have, however, maintained an interest in this condition; this because of my early experience in the sixties; and also because of the fact that, when I was a medical student in Baltimore in the late fifties, I did some basic research (also published) on the physiology of tremor. I try very hard to keep abreast of the medical literature in this and other areas of my specialty; and I thank the List for encouraging me to be even more obsessive in this regard. Alan makes the suggestion that somehow, I am somewhat "questionable" as to my own training, experience, and outcome results. If "credentials" mean anything, I hold them all; I have been involved in peer review for many years, I have not been accused of incompetence or unethical behavior, do not have any malpractice suits against me; and I think that my standing in my community is a respected one. I have indeed allowed prospective patients (for whatever treatment proposed) to speak with former patients, but I have not permitted this unless the former patient gives permission for such, this due to privacy considerations. If, for example, a patient who suffered from AIDS was involved in a study of a new treatment for same, how would that patient feel if they suddenly found that their name was on a "list" which was available to laypersons interested in treatment outcomes? I am saddened at Mr. Bonander's criticisms of Dr. Nicholas Barbaro at UCSF. I am not aware of Dr. Barbaro's results as far as pallidotomies are concerned; but I do know Dr. Barbaro, and have found him to be a competent academic neurosurgeon, working at an excellent institution, who cares for his patients; and until recently, Dr. Barbaro was the only neurosurgeon in my area who was working with PD surgery (I understand that this may change shortly, and this is all to the good). As to the "fully qualified neurosurgeon" who "canvassed the East Bay hospitals for a place to perform these surgeries" and who, according to Mr. Bonander was "refused" privileges to do such, I am aware of Dr. Laszlo Tamas and his interest in this surgery (and he, by report, has received privileges to do this surgery at a small community hospital in our area); but, although I am a member of our hospital's Credentials Committee, I have not seen his application at our institution and am not aware of any "obstruction" to his work. Our institution, the Alta Bates Medical Center in Berkeley has, in the past, granted privileges to surgeons (with proper training and experience) who have wished to bring new technologies to our community; and, in the case where none of the current staff members do the procedure, we have arranged for the peer review to be carried out by "outside" people under the supervision of the Credentials Committee. So, the issue of "privileges" is not really an issue, although I, myself, as previously stated, have reservations as to whether clinical research should be done in private, community hospitals. Despite my concerns, however, I would not "obstruct" such surgery being done if the proper equipment, personnel, and safeguards were in place. As to my father-in-law (and he was the main reason that I joined this List), he has considered the surgery option (and he is a retired physician) and has declined such. As an academic (he was Professor and Head of the Department of Medicine at a major eastern University before his retirement), he has studied the literature and has made his own conclusions, which I fully support. I agree with Alan that many decisions made by patients are based on emotional considerations; and this is only "human"; but when it comes to scientific research, it is only through reasoned and objective analysis that progress will be made. The Mexican work (adrenal cell implantation), cited by Mr. Bonander, is a typical example of how "emotionalism" can lead to injury to people; and I do not wish to see this type of thing repeated in the case of the current work with pallidotomy. There is an old maxim in medicine which I would like to re-visit here. Most of us who go into the healing professions do so because we "want to make people better". We are often consumed with this desire; and, because of this, we can do things which, far from improving a patient's condition, can actually make them worse. The old surgical dictum, "First do no harm" is a good one to remember; I take it one step further when I say that sometimes, it may be better to *not* "do something" when the "doing" may actually lead to worse problems than what is "standard". It may well be that pallidotomy *is* a real advance in the treatment of PD; but the only way that this is going to be decided is by employing the time-tested scientific and ethical canons of medicine, and not trying to advance the art and science of medicine by "anecdotal" evidence. "Anecdotes" are valuable for individuals, but when one is trying to bring advances to humankind as a group; I believe that "science" is what is to be desired. I appreciate the posting of Don Berns' 1994 article from Movers and Shakers, and I respect his dedication, fortitude, and faith. It is a tribute to Don as a person; and, as I have told him directly, I admire him for his strength as he proceeds on his personal journey with PD. I cannot, however, agree with some of his activities concerning *other* people afflicted with PD, and I have likewise told him so. I hope that we can all "put this matter to rest" (personal attacks) as we continue to use this List for what it is (and serves well), a group dedicated to the spread of information and support for its members. Sincerely, Bob c:\amipro\docs\pallid4.sam -- ******************************************************** Robert A. Fink, M. D., F.A.C.S. Phone: 510-849-2555 Neurological Surgery FAX: 510-849-2557 2500 Milvia Street Suite 222 Berkeley, California 94704-2636 USA E-Mail: [log in to unmask] CompuServe: 72303,3442 America Online: BobFink "Ex Tristitia Virtus" ********************************************************