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Old 08-23-2009, 03:36 AM
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fmichael fmichael is offline
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Join Date: Sep 2006
Location: California
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fmichael fmichael is offline
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fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
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It has been brought to my attention that I failed to provide an epilogue after I was told that IRB approval would be required to get ECT for chronic pain, specifically CRPS. Apologies, but I suppose I just a little depressed over the situation.

It developed over the course of a few weeks that the "real reason" my doctors had been told that they would have to go to an IRB was that, following the release of One Flew Over the Cuckoo's Nest in 1975, based on Ken Kesey's* 1962 book about life in a state mental hospital http://en.wikipedia.org/wiki/One_Fle...9;s_Nest_(film) , well meaning folks in California organized an initiative campaign in 1976 - just a year before they were going to inflict such grevious damage with Proposition 13 - to strongly restrict the use of ECT, even though ECT wasn't the agent of true evil in the book/movie, those right's belonged to the practice of lobotomoy, a practice which essentially died out in the U.S. in the late in50s with the introduction of Thorazine. http://books.google.com/books?id=ozP...razine&f=false

So, as reported by the New York Times Magazine, November 22, 1987, "In 1976, California passed some of the most stringent legislation in the country." http://www.nytimes.com/1987/11/22/ma...vulsive&st=cse While much of the focus of the law dealt with the creation of an adversary system to protect the rights of the patient who either declined the treatment against the strong feelings of his/her doctors or was otherwise incompetant to give consent in the first place, less attention was paid to a provision that apparently restricted ECT (and recall this was in the days prior to the kinder/gentler versions) to certain enumerated psychiatric conditions, and of course making no reference to the treatment of chronic pain, and then only if something on the order of 3 psychiatrists certified that no less invasive alternative was available, unless it was carried out in the context of (legitimate) medical research, that it under the supervision of a hospital IRB.

And my pain doc told me that with no money for a study, there was no point in going to the IRB. Not to worry, my psychopharmacologist in private practice told me, just have your pain doc and his ECT specialist (who was too young to even know of the law's existence until the departmental higher-ups brought it to his attention) apply to the IRB for permission to run a very small study (n = 1). No go. It's apparently a ton of work to get IRB approval of anything controversial (and we were talking about doing in-patient RUL ECT with ketamine as the general anesthetic) and they were not prepared to devote the better part of a year of their lives for a single patient study, which would at best result in a case note that would be largely redundant vis-a-vis winning the broader battle of getting insurance coverage for the procedure.

And that was the end of the road for me, where even if I went with a conventional anesthetic in another state that might permist the procedure, it would have be be someplace where someone I knew could pick me up every afternoon I had the procredure done on an out-patient basis (as with any out-patient anesthesia). And as a practical matter, that restricts me to my hometown of Rochester MN, where it has been my personal experience since 2002 that the Mayo Clinic is pretty conservative when it comes to the treatment of CRPS, especially for folks they can't regularly follow up with thereafter, i.e., who don't live in the immediate area, and my efforts thus far to generate any specific interest in this regard have been unsuccessful.

So it goes. Apologies again for not getting back earlier.

Mike

* I saw Kesey come on stage in a top hat and tails at a Halloween show of the Grateful Dead in Oakland in 1991, days after the death of Bill Graham in a helicopter accident and the terrible fires in the Oakland Hills, to deliver a eulogy for Graham, in the the Jam following Dark Star. I can also recall feeling that I had been hit in the gut when they played Fire on the Mountain, where in addition to the helicopter having crashed into a large hillside, a close friend's brother was an Oalkand cop who perished in the fires (along with something like 22 others that morning) trying to lead people to safety. The show's here if you're interested, just click on "VBR MYU" on the right for a free audio stream: http://www.archive.org/details/gd91-...897.sbeok.shnf
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