Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-01-2008, 01:00 AM #1
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Lightbulb RUL ECT as just maybe a cure for RSD (in perhaps 2 out of 3 patients)

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

Last edited by fmichael; 04-01-2008 at 03:16 PM.
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Old 04-01-2008, 03:38 PM #2
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[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
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Old 04-03-2008, 10:00 AM #3
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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
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Old 04-03-2008, 02:22 PM #4
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Default Hi 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
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Old 04-04-2008, 02:09 AM #5
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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
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Old 04-04-2008, 07:00 AM #6
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Great article!!!

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

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Old 04-04-2008, 08:52 AM #7
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Just want to clear something up I wrote yesterday about the SCS. I haven't had problems with it...in fact it has been my life saver. However with that said if I would have gone with the ECT route I might not have the SCS today or the need for medication.

Mike...I will print your article and take it with me to my pain management Dr. who I will be seeing on the 10th of this month. I will also take down the 3 articles you mentioned. I'm sure he has access to all of them and he has a staff who can pull anything he needs. I will also print out a copy for the Doctor I worked with who still performs ECT...I'm sure he will enjoy it.

As far as cost goes I would think it would still be out of pocket and expensive.
Hugs, Jewells
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Old 04-04-2008, 11:18 AM #8
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Abbie and Jewells -

I am told that the approximate cost per session is anywhere between $1,000.00 and $1,200.00, and those figures may be a couple of years old. Multiplied by - say - 8 sessions, an you're in the range of $9,600.00, $14,400.00 if you go for all 12.

So the issue of pursuading the insurance companies to pick this up is of some obvious importance.

Mike
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Old 04-05-2008, 10:31 PM #9
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Kudos on the article. It is superb.

It's very interesting as well. One of the many docs I've seen (and the oldest) suggested that much chronic pain is thalamic in nature. ...or at least this was the common wisdom many years ago.
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Old 04-08-2008, 08:47 PM #10
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Thanks for the research Mike- Looks like we need some guinea pigs and some money!

Deb
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