I am so sorry your pain has returned. I am glad that your ECT offered a brief remission from the RSD mess, and I hope you find something with more long-lasting results!

I just posted this in Kate's thread, but for the sake of symmetry, I wanted to put it up here as well.

For the last three months, I've been pushing with the assistance of my pain doc at a local medical school to get into a round of RUL ECT treatments using ketamine as the general anesthetic, where brain PET scans show almost identicle changes in regional cerebral blood flow - specificailly to areas of the brain that control "sympathetic tone" in blood vessels - so that the ketamine could be expected to have a catalytic affect on the ECT process. To my real frustration, I found out on Friday morning that that university hospital where it was going to be done regards the proceedure as sufficiently "non-standard" that it will have to be submitted to it's "Institutional Review Board" (IRB), something that I understand can take over a year. No fun.

Mike

Sorry to hear that Micheal- is there anything you can do to push it along. Maybe write a letter to the person in charge?

Just a thought

Deb

Mike,
I am so sorry! It sucks that we have to go through all this BS.

Hi Jewells, The ECT sounds very interesting. I curious about your experience with SCS? I have not considered it, but the ECT maybe. I have full body RSD 12 years. Thanks. Loretta Jewell

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

Thank You, Mike...I dl it. It gave me chills.

I clicked on the article link that you wrote and it is no longer there. Is there another road to journey to read your work of passion on ECT?

Dew

Hey Mike,
I just wanted to say congratulations on such a wonderful article! I also wanted to thank you for caring about all of us as well as yourself to do all this. I guess that it was quite a lot of work to do but in the end it paid off. Thank you so much for your efforts on everything!

Sincerely,
Tracy

So Dew, tell me more about those chills. If it's about the eulogy to Bill Graham, the truly weirdest part of the whole night was getting to the front entrance of the Oakaland Collisium, seeing the flags at half staff, and not being 100% sure in whose honor that was being done, although being a municiple building, we suspected it was for the fire victims.

And no problem with the fresh link. It's maintained on the RSDSA Medical Artical Archieve page at: http://www.rsds.org/2/library/articl...haels_CRPS.pdf

That said, in the intervening year and a half, there are a couple of very minor things I would now change (including one error) but nothing that effects the outline or any of the conclusions of the paper. I'll be (er, happy) to provide a detailed mea culpa if anyone's interested.

Mike

chills from ......the eulogy to Bill Graham, and the music, altogether.