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1/15/95 Dear friends, There seems to be some confusion over the "statistics" that emerged from my survey of Dr. Iacono's pallidotomy patients. I ask you to recall that this was an informal survey. My purpose was to confirm or disprove the horror stories reported by a number of top neurologists. This I feel I have Accomplished. For my money, what they said turned out to be pure calumny. Aviva is now scheduled for surgery March 1. When we return home to Jerusalem, or perhaps even before, I'll let you know how things went and give you my personal opinion of Dr. Iacono without pulling any punches. For the moment, I have to respect Dr. Iacono's courage, intuition and compassion for having sent me the list after hearing of our plight. Very few doctors would do this under any circumstances. After all, he has a waiting list of close to a year. He could have simply brushed me off without risking financial hardship. Don't you think? We managed to get an early date by being put first in line for a cancellation spot only because of Aviva's rather urgent condition and the positive prognosis of her profile based on data and a video of her in both her "on" and "off" conditions that we sent to Dr. Iacono. She was already scheduled for her bilateral pallidotomy last November but the high level "horror stories" and my consequent need to do the survey caused us to step back. Concerning my "statistics," I quote the pertinent lines from my original posting: >The list contains 165 entries arranged consecutively, by date, >beginning with one dated 11/20/93 and ending with one dated >11/21/94. >Of the 17 names freely given out by Dr. Iacono's office as >references, only 3 appeared on this list (one of which appears 3 >times), the rest having had their procedures either before >11/22/93 or after 11/21/94. Knowing these could only be >positive, I refrained from calling them. >Eleven names appeared twice. These were cases who went back for >a second procedure within the year, i.e., the completion of a >non-simultaneous bilateral pallidotomy. >Two cases (referred to above) turned out to be last minute >cancellations and 33 numbers were unobtainable or belonged to >correspondents who were not available during the period in >question. >I actually spoke to a total of 113 households. Just under half >of those I contacted had undergone simultaneous, bilateral >pallidotomies, a slightly smaller number had unilaterals and >about 10% had two consecutive procedures. Perhaps 5% had >thaladotomies (mostly for tremor) in addition to their >pallidotomies. I failed to record which procedure in about 15% >of the cases. I'll now try to paraphrase the essentials from the above in a way that will hopefully clarify my own understanding of it. But first, please understand that the list with 165 entries is unedited and includes all the procedures done by Dr. Iacono (or by members of his team under his supervision) during the year in question. Two were cancellations bringing the overall list down to 163. Eleven names appeared twice bringing the list further down to 152 names. It should be noted that all of the 11 names that appeared twice were positive. I actually completed 113 calls including the same two cancellations which brings my sample down to 111. I knew, in advance, that 3 others were positive. So this makes 114 covered. Of these only 9 felt they were not helped leaving 106 that felt they were helped. Of the 9 that were not help not all felt they were hurt and of those who felt they were hurt not all felt it was the fault of the procedure. Only 4 of the 9 gave an explicitly negative recommendation. Only 4 out of 114 makes a casualty rate of 3.5% and remember, there are no deaths only various degrees of deterioration at least some of which might have come about in the normal advance of the disease. I confirm, Vern, only 9 reported they weren't helped, not 46. You misquote me as saying: "46 felt they were not helped" when what I wrote was: 46. Wasn't helped because he probably has "Parkinsons's Plus." Forty-six was the case number of the list of those I contacted, not a number of patients (as you eventually concluded). The same with all the other 9 cases I cited by my numbering system. Then you ask: "Would I fly in a Shuttle with only a 92% reliability?" I contend, Vern, that your question doesn't apply here. (Besides, for a chance to go to the moon, I think I'd grab at those odds.) And as you can see, with only 3.5% explicitly negative, I have now "pushed" the "safe" figure to 96.5%. But I think the question, better put, would be: Would I fly in a Shuttle that had a 92% reliability of getting me some distance away from hell-on-earth, 8% of doing me some harm and well under 1% of killing me? My wife, Aviva, says those are better odds than she could have reasonably hoped for and, from what I understand, Dr. Iacono's aim and odds are getting better all the time. I wonder what batting averages other neurosurgeons are getting for their pallidotomies. One surgeon who spent quite some time at watching Dr. Iacono operate wrote me this evening. I quote him but conceal his name since I haven't had a chance to ask his permission: "The reason that Iacono has not had many complications is the way that he performs the pallidotomy. If any thing, that will be his major contribution (although I suspect that he will contribute more) to Parkinson's surgery. Iacono is a spectacular technical neurosurgeon, and I would let him do my pallidotomy if I needed it (since I can't do one on myself!). "Thanks again for your survey on behalf of the functional neurosurgery community." Concerning the possibility of being "disqualified from future (and possibly, more fruitful and longer lasting) procedures simply because they no longer have a "virgin" brain," Vern may be right, at least in the short run. In the long run I kind of doubt it. Just as pallidotomy patients continue benefitting from their medication (and even require lower doses in most cases) why wouldn't they benefit from natural hormone secreted by genetically engineered, implanted cells? Be well, everybody, David S. Devor