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Neuropathy
Hi Mike,
I'm still in the process of being diagnosed, but I was just wondering if you've heard anything about this being used for peripheral neuropathy? Or neuropathy of any kind? Thank you, Kris |
Mike, et. al.,
One other observation I'd offer here is that I also began to notice that I would react very quickly to things that prior to this wouldn't have bothered me at all - it was as if I'd developed an anger response "hair trigger" over what were often the most trivial things. All of a sudden I'd just flash really angry - to the point that I would think now why in the world would that (whatever "that" might have been at the moment) have made me angry, much less THIS angry?! Just a curious reaction I thought I'd pass along ... |
Jan
I certainly hope all issues resolve themselves - Thanks for being such a trooper I look forward to a final report in 4-6 weeks when all is back to status quo :) peace and strength GnP |
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Check this out: Abdi S, Haruo A, Bloomstone J, "Electroconvulsive therapy for neuropathic pain: a case report and literature review," Pain Physician 2004 Apr; 7(2): 261-3.You can link to the article free of charge at http://www.painphysicianjournal.com/...;7;261-263.pdf Mike |
Thanks Mike!
Wishing all of us with nerve pain a complete cure. Kris |
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Here are a couple of abstracts that might be helpful: Propofol for the management of emergence agitation after electroconvulsive therapy: review of a case series, O'Reardon JP, Takieddine N, Datto CJ, Augoustides JG, J ECT 2006 Dec;22(4):247-52and Promethazine for the treatment of agitation after electroconvulsive therapy: a case series, Vishne T, Amiaz R, Grunhaus L, J ECT 2005 Jun;21(2):118-21.One quotation from the O’Reardon article stuck out at me: “Postictal agitation (PIA) in the setting of ECT is a frequent clinical problem reported in up to 10% of patients undergoing ECT and in 7% of ECT sessions.” I have a copy of the article, which I am sending you by PM under separate cover – it’s small enough to attach – and I will be happy to send it to anyone else who’s interested. Mike |
Unfortunately I now have to report that my pain has returned and at this point is nearly back to the everyday levels I had prior to treatment (level 7/8 on a "normal" day). Obviously I'm extremely disappointed and for me at least, I wouldn't be willing to go back for more treatments - too much cognitive impact that I'm still recovering from (at least I hope so).
With the benefit of hindsight, there's one really significant observation I'd offer anyone considering treatment here and that is that as soon as you get pain relief, stop any further treatments. It's not that additional treatments do anything to carve in the outcome and "be sure"; instead the more treatments you have the more likely you are to be impacted by one or more of the adverse side effects. I got all of my pain relief in the very first treatment and wish I had stopped at that point. Additional treatments really didn't achieve any additional incremental relief, but did expose me to "fallout" I'd hoped to avoid and am still dealing with. Just a caution based on my own experience here ... |
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Dear Jan -
I am very sorry that ECT was not successful for you. As I expressed in the article, it seems to work for about 2 out of 3 people. No one appears to know why for some and not others, where it's basically the only therapy out there I'm aware of that works as well on people who have had this for a long time, as opposed to helping those with relatively fresh cases or in people under a certain age. As to short-term memory loss, which I believe is what you complained of, it's supposed to go away in 4 - 6 weeks, max. The promising alternative is to do it with a ketamine anesthesia, which has been shown to cause no significant impairment in short-term memory after anesthesia clearance - 72 hours - but the trick there may be getting insurance company approval. As to your last post, you should be aware that the literature doesn't necessarily support a "stop while you're ahead approach," suggesting that when there is a positive response to ECT, in terms of pain levels, shows that it is progressive over time: There was a progressive lessening of pain over the course of ECT treatment. A course of 8 bilateral ECT treatments resulted in a dramatic reduction in pain."Case Reports: Chronic Pain With Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assessed by Single Photon Emission Computed Tomography," Sei Fukui, M.D., Ph.D., Shino Shigemori, M.D., Atsushi Yoshimura, M.D., and Shuichi Nosaka, M.D., Ph.D., Regional Anesthesia and Pain Medicine, Vol 27, No 2 (March–April), 2002: pp 211–213 at 212; "Electroconvulsive Therapy in Complex Regional Pain Syndromes," William W. McDaniel, MD, J ECT 2003;19:226–229 (reporting on one of three participants in ECT treatments for pain co-morbid with major depressive episodes): Her right arm had been injured in a motor vehicle accident 5 years earlier, and although the multiple fractures had healed, she developed severe CRPS and her dominant right hand was crippled by joint contractures. She listed the pain and disability as the most important stressors contributing to the depression. She was hospitalized with suicide precautions. Her ineffective antidepressant medications were discontinued. She was treated with a series of 12 treatments of ECT with bitemporal electrode placement under anesthesia with methohexital 80 mg and succinylcholine 80 mg. Her ECT was performed using the MECTA SR-1 using a dose titration protocol with the dose set just above the seizure threshold. The treatments were well tolerated, and she demonstrated improvement in mood beginning by about the third treatment. Her immobile right hand began to move after the fifth treatment, and physical therapy was initiated. By the 10th treatment, the pain, stiffness, discoloration, and coldness had resolved. By the 12th treatment, the remission in her depressive symptoms seemed stable, with normal sleep, appetite, and concentration, and treatments were discontinued.Finally, in their 1993 study: King and Nuss reported the case of a 32-year-old woman status post left arm injury and arthroscopic repair of ligament damage. She subsequently developed reflex sympathetic dystrophy of the left arm characterized by weakness, piloerection, swelling, decreased range of motion, discoloration, hyperesthesia, and disability from work and sports activities. She became depressed and was admitted to a psychiatric unit. Behavioral pain management approaches, antidepressant medication, and stellate ganglion block did not help, and after a suicide attempt, ECT was commenced. For 12 hours after the first treatment, the arm was normal in function, pain free, and not discolored. Over the course of the next seven treatments, the period of improvement steadily increased. On 6-month follow-up, the patient’s arm remained normal in function and without the objective physical stigmata of reflex sympathetic dystrophy. [Emphasis added.]"Reflex sympathetic dystrophy treated by electroconvulsive therapy: intractable pain, depression, and bilateral electrode ECT," King JH, Nuss S: Pain 1993, 55:393–396, as cited in "Electroconvulsive Therapy in the Management of Chronic Pain," Rasmussen KG and Rummans TA, Current Pain and Headache Reports 2002 6:17-22 at 20. Having said this, it is my understanding, at least in the context of depression, that ECT is generally discontinued after roughly the sixth treatment if there is no sign of improvement by then. Since the same psychiatrists would likely be administering ECT for pain conditions, the same rule of thumb might be used. Personally, if I could swing the insurance issue without a diagnosis of depression (the ironic price I pay for having successfully begun a meditation practice five years ago specifically developed for pain patients, Jon Kabat-Zinn's Mindfulness Based Stress Reduction: MBSR) I would play the odds and do maybe 9 RUL ECT treatments over three weeks, without any real hesitation, although preferably in-patient with ketamine anesthesia to minimize the risk of short memory loss with which you had to contend. FULL DISCLOSURE: the Baclofen I'm on for otherwise constant spasms already wrecks havoc with my short term memory and ability to attend to matters that don't hold my interest, so perhaps I don't have all that much to lose.;) Mike p.s. No direct links to cited articles available, but Fukui and McDaniel pieces are on RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html |
Jan
I too am so sorry this did not work for you :( I am so impressed with your courage and bravery Thank you so much for sharing your experience :) In this Olympic year I will borrow this sports adage that certainly transcends the medium . "No guts, No Glory" Jan- this fits you to a T . You gave it your all - for that you should always be proud. peace and more GnP |
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!
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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
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. |
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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 |
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? :hug: 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 |
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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 Grahamhttp://i28.tinypic.com/280s48g.jpg, and the music, altogether.
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That said, it is, by far and away, the best reading of ee cumming's "Buffalo Bill" http://www.boppin.com/cummings.html I've ever heard, and IMHO worth the not insubstantial price of admission for that alone. Consider it as a raw shot of Ken Kesey, strait up, no chaser. Mike |
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