Dear Folks-

First, my apologies for being away for so long. I understand that a number of my old friend no longer drop by, but that there are new faces here as well. And to them, hello.

Until last fall I was a frequent contributor, often posting stuff on recent articles, etc, many of which I could get through graduate student friends. Then last October or so I forwarded to Jim Broatch of the RSDSA an intriguing case report from Dr. Schwartzman’s group concerning a woman – a disabled judge – with long-term "refractory" full body RSD who had eventually developed a deep depression, for which she was treated by her psychiatrists with conventional “bi-lateral electroconvulsive therapy” (BL ECT), whereupon her RSD suddenly went into complete remission and had, as of the date of the 2007 article, remained that way four years later. Wolanin MW, Gulevski V, and Schwartzman RJ. Treatment of CRPS With ECT. Pain Physician. 2007. 10:573-578. Jim then put it up on the RSDSA Medical Articles Archive page under the heading “Treatments,” where it is indexed alphabetically by author and can be found at http://www.rsds.org/2/library/articl...ive/index.html.

I then suggested to Jim that it might make a nice topic for an article in the RSDSA Review, to which he asked me if I had any suggestions for an author, whereupon I volunteered. Long story short, as I dug into this, it got more and more interesting, and when I reported some of my preliminary findings – namely that an alternative form of ECT associated with far fewer cognitive side effect than BL had been wrongly ascribed 15 years ago as being ineffectual in the treatment of chronic pain – I was told to refocus my efforts instead on an informal medical journal Jim was beginning to develop of relationship with, the Journal of Practical Pain Management. Now, the last time I took any science class was 30 years ago in college, so the idea of writing for a medical publication was daunting to say the least. But with a few particularly helpful hints from my doctors and after pouring through over a hundred journal articles and a few books later, to the exclusion of virtually everything else in my life, things started to gel. And fortunately, a couple of my doctors stayed there to critique me all along the way.

Basically, so-called “right unilateral ECT” (RUL ECT) is associated with no significant long term retrograde amnesia – the principle side-effect of BL – and works about as well as BL in reported cases in the treatment of RSD, putting roughly 2 out 3 cases into long term remission. But what was fascinating was that with modern brain imaging techniques, scientists could see an increase in blood flow to on part of the brain – the thalamus – during the moment of the ECT seizure! This was exciting because the thalamus was known to experience reduced blood flow in RSD/CRPS-1 patients and would be restored to normal upon successful treatment, e.g., with ketamine, but it had been thought that the change was an “adaptive” response to the reduction of pain over time. Now here was evidence that it was happening in the instant of the ECT treatment. What’s also interesting is that not only does ECT have an almost identical regional cerebral blood flow (rCBF) “profile” to ketamine administration, but when ketamine is used as the general anesthetic in ECT treatments (a general anesthetic is always required) there is virtually no short-term memory loss beyond the time it takes to clear the anesthetic from the system, when short-term memory losses lasting perhaps 4-6 weeks after ECT treatments were always deemed a cost of the treatment.

Plus ECT is relatively safe overall, and is associated with no more than 2 deaths per 100,000 in a large demographic study, as opposed to the “normal” death rate of 7.7 per 100,000 associated with general anesthesia in the United States. Finally, among all of the chronic pain conditions treated with ECT, RSD has actually been suggested to have among the highest success rates.

Having said this, I should caution all that while these reports go back many, many years, there have never been any large double blind studies done of this treatment: which would be almost impossible to do because one apparently can tell waking up whether you’ve been zapped or not. As such, the issue of insurance coverage may be somewhat problematic for the time being.

In any event, after months of frustratingly slow effort, I barely finished the article in time to meet my deadline, which now appears in the March 2008 issue of the Journal of Practical Pain Management under the title “Right Unilateral Electroconvulsive Therapy Treatment for CRPS.” A copy of my article can be linked to on the JPPM site at http://www.ppmjournal.com/pdfs/PPM_M...haels_CRPS.pdf and I’m pleased to see it on the RSDSA Medical Articles Archive page as well. I would encourage anyone who’s interested to take a look.

And no, I haven’t had the treatment yet myself (anywhere from 8 to 12 separate applications appear to be required) but hope to do so when it can be arranged.

Please excuse the length of the post, but there was much I wanted to share.

Mike

[F][/FONT]Hi Mike,
Thanks so much for all your efforts put into this project. Your enthusiasm, along with what this treatment could potentially accomplish is so very exciting. Who better to unlock this mystery than someone who has the passion because he knows firsthand the horrors of RSD. I pray that you are on to something big!! Thanks again.
Jeanne

Hi Mike....Back in 2002 when I had my car accident I worked in a psy. hospital where ECT was used for treating severe depression along with other acute mental disorders. ECT is not as bad as people think it is. I have seen some amazing things happen with it. Short term memory can be a problem. For some of my patients I had seen a few come out of the difficulties and then I seen some who had problems for longer periods. The good always out weight the bad in many of the patients.... truly amazing treatment for most of the patients.

One of the psychiatrist that provided ECT at the hospital I worked at suggested I try ECT back in 2002. I had gone back to work after my 12 week leave of absence and was still in so much pain. I thought about trying it but the cost would have had to come out of my pocket. At that time it was aroung 600.00 per treatment and I think it was at a good price because I worked at the hospital where it was performed. This psychiatrist told me he had read that it might help people with RSD because of the electroconvulsions it provided. Again that was back in 2002. I am sure he would be very much interested in your article. I will call him and tell him about it. Now, I am so sorry I didn't give it a try. To think of all I have been through with SCS while ECT might have been the cure.

Short term memory loss? Hmmm, my medications do that to me not to mention the lack of sleep because of the pain. That is something to think about ECT vs medication. Thanks for the information and article.
Hugs, Jewells

I was offered this about 5 years ago for my depression. I guess I should have ran with it, huh? My insurance would pay for it.

I would say anyone fighting depression could get it under that heading and get it paid for by insurance.

I don't know if I'd do it today but I guess if my RSD was at it's worst, I might.

Ada

Hi again.

Jeanne, that was just about the kindest words that have ever been directed my way. If any one note could have made writing this worthwhile, that was it. Thank you.

And as far as the insurance and short-term memory loss issues are concerned, I have a couple of thoughts. First, medically refractive depression (not responding to medication) is a hardcare psychiatric diagnosis. But if the shoe really and truly fits, why not wear it?

Secondly, on short term memory loss, I agree completely that medication can be crippling in that department. I learned early on in this disease that I could take Baclofen and practice law for that bery reason. However, once I was no longer working as a lawyer (because the stress of litigation exacerbated the pain beyond any manageable level) the concern became moot and I've been popping Baclofen with some regularity for a while now. That said, as I alluded to earlier, recent research suggests that using ketamine as a general anesthetic may do away with the short-term memory loss issue altogether, once the ketamine has cleared from your system, at most 72 hours after any given ECT treatment. McDaniel WW, Sahota AK, Vyas BV, et al. "Ketamine Appears Associated With Better Word Recall Than Etomidate After a Course of 6 Electroconvulsive Therapies," The Journal of ECT, 2006, 22:103-106. This is a tremendous advance, and one that may not yet be fully recognized in the psychiatric community. On the other hand, it's just one study and others may be in the offing.

That said, if anyone wants a copy of that article to share with your doctors, drop me a PM with your email address and I'll send it on. Other particularly relevant articles include the following:

Rasmussen KG and Rummans TA, "Electroconvulsive Therapy in the Management of Chronic Pain," Current Pain and Headache Reports, 2002, 6:17-22;

McDaniel WW, "Electroconvulsive Therapy In Complex Regional Pain Syndromes, The Journal of ECT, 2003, 19:226-229;

Wolanin MW, Gulevski V, and Schwartzman RJ, "Treatment of CRPS With ECT," Pain Physician, 2007, 10:573-578, and

Sackeim HA, Prudic J, Fuller R, et al., "The Cognitive Effects of Electroconvulsive Therapy in Community Settings," Neuropsychopharmacology, 2007, 32:244-254.

Once more, I would be happy to share copies of any of these articles. I fact, I have pdf files of most of the stuff cited in my article and could share it if requested, but I think that the five articles I've listed would probably be of the greatest immediate value in securing RUL treatment, for anyone who wants to go there. Let me know. (It may take me a day or three to get back to you though, for which I would request your indulgence.)

Mike

Great article!!!

I was wondering... if anyone knows what this kind of treatment costs?? Ball park figure???

Thanks,
Abbie

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

Hi All,

I just had a conversation with my PM doctor in regards to RUL ECT. I have tried almost everything possible ketamine more than once, epidurals, trigger point injections, some meds but we keep it low because one day I will be over this nightmare and will have to get off the meds I am on, so I chose to keep it light.

Anyway the protocol is suppose to be in orderr to do RUL ECT "It must be combined with very, very bad depression" , he or any one else he knows who works with RSD Patients just would not do it for that reason only,just RSD.
I think the reason we are hearing a lot about it is because most RSD patients are depressed some more than others. I was also very excited when I first read about it but I don't think it will become a common theraphy for RSD.

Keep us posted.

Ann