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

Thanks
 

[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

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

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

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

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

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.

TY
 

Thanks for the research Mike- Looks like we need some guinea pigs and some money!

Deb

I looked into this with my PM
 

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

Dear Ann -

I think the key point that has to be made to both the pain mgt. and psychiatric community is the finding of the Johns Hopkins study that ECT relieves chronic pain independently of depression. Wasan AD, Artin A, and Clark A. "Case-Matching Study of the Analgesic Properties of Electroconvulsive Therapy," Pain Medicine, 2004, 5:50-58.

For too long it was just assumed that depression was co-morbid with pain and if you got rid of the depression, a lot of folks pain would improve as well. The Johns Hopkins study put that to the lie.

Also, as pointed out in the article, mid-seizure ("ictal") PET scans can now show different patterns of changes in regional cerebral blood flow (rCBF) for people with depression as opposed to CRPS patients, where patients with depression tend to have too much blood flow in the cortex (which is reduced with ECT) while CRPS patients have too little blood flow in the thalamus, which is reversed with ECT. See, e.g.:

Nobler MS, Oquendo MA, Kegeles LS, et al., "Decreased Regional Brain Metabolism After ECT," Am. J. Psychiatry, 2001, 158:305-308;

Takano H, Motohashi N, Uema T, et al., "Changes in Regional Cerebral Blood Flow During Acute Electroconvulsive Therapy in Patients With Depression, British Journal of Psychiatry," 2007, 190:63-68; and

Fukui S, Shigemori S, and Nosaka S., "Changes in Regional Cerebral Blood Flow in the Thalamus After Electroconvulsive Therapy for Patients With Complex Regional Pain Syndrome Type 1 (Preliminary Case Series)," Regional Anesthesia and Pain Medicine, 2002, 27:529-532.

This is real folks. I for one am not going to stop until I can get this done. I already know of one researcher who I understand is attemping to get a double-blind study of closely matched pairs through his IRB, where one group might get 8 -10 applications of ketamine anesthesia alone, while the other group would get the ketamine in conjunction with RUL ECT. This study may be a year away from coming together, but rest assured, it will happen.

Mike

ps I stand once again willing to send pdf files of almost everything that was cited in my article to anyone who can use them: just send me a PM with your email address.

pps Forgot to include one more article of significance:

Maihöfner C, Handwerker HO, Neundörfer B, et al., "Cortical reorganization during recovery from complex regional pain Syndrome," Neurology, 2004, 63:693-701.

It's important because it demonstrates that when CRPS is relieved through other therapies, e.g. ketamine, the rCBF changes are pretty much the same as those of ECT. Cool, isn't it?

Thank you so much for this. I've been away for awhile & am so glad I didn't miss this post. I don't think you give your short term memory enough credit. If it was really bad you wouldn't have been able to do this research or article. Mine is so bad, I have a hard time just reading through your post.

This sounds so exciting. If it can get rid of the pain, it's worth the $.

Thanks again,
Linmarie

Dear Linmarie -

Worth the wait may be more like it. I have an appointment with an ECT specialist next month, who originally wasn't that interested in seeing me, but becacame intrigued and invited me in to see him. He did so however with a warning, that, at least in California, ECT is used in purely a psychiatric context and by law you have to get three doctors to sign off before it can go forward, so he wasn't terribly optomistic.

As things stand, I may have a better chance of getting into a controlled study that's more than a year away at a local medical school. I would wish you better luck in your jurisdiction, but I see you're in CA as well. Anyhow, I'll report back if I get good news.

Mike

ps On the short-term memory issue. In working on the article, I found that while my ability to understand technical materials remained relatively intact, my “expressive” functions deteriorated to the point that I could work almost for a full day and then have only a paragraph to show for it. And then, after I had “completed" a section of the article, I reviewed ten pages of it in double-spaced type, only to see the it was incomprehensible, with thoughts at once scattered and repeated throughout, in no apparent order. Finally, I would up printing the pages out and taping them in order to my dining room table, where I could see it as a complete visual whole. I then spent three full days deciding where each and every paragraph, sentence and phrase belonged, until it assumed some level of cogency.

Further frustrating my effort was my inability to compose at all from memory: I was like a child in 6th grade continually referring to his notes as each paragraph was laboriously strung together, one by one. Even now, six weeks after the work was submitted, as I review the finished piece, I am continuously surprised with almost every paragraph, as though meeting a long forgotten friend.

I just printed your article & will read it when my brain is less foggy than now. You spent all that time writing it, I have to at least read it. Sometimes, it gives me more hope when RSDers are trying to find a cure versus non-
RSDers. Not only am I interested in getting rid of the pain but also the depression I have since RSD.

I wish you the best of luck for getting into the study group. I am curious, how did you find out about a study?

Linmarie
:)

Dear Linmarie -

You ask about finding a study. Actually, it's more like I'm actively lobbying people to pick this up and just do it already.

Mike

frustrating report
 

I found out yesterday in a consultation with a local ECT doctor that the ECT therapy which I have been working on for months, was not available to a variety of vague regulatory reasons except perhaps at a "tertiary medical center" and was later told that within the last few weeks, Michael Stanton Hicks, M.D. was approached by someone - who had apparently read my article - only to be told that while he could provide Prialt, the Cleveland Clinic doesn't do ECT for CRPS.

Mike

on second thought
 

Hi Mike! Great work bro!

Sorry to hear about the set backs, but press on my friend, the squeaky wheel gets the grease as they say. At least you articles are getting notice.

I thought I was the only one that did this. It is very frustrating to say the least. At one time I could read over 1800 words per minute with over 80% comprehension. Now as I read, I read lines over and over, and cant remember what I read as I approach the end of the page. When I write it turns out just as you have said in the above quote.

I sure hope your doin well bro, and am glad to see that you have emersed yourself into some fine work. :Good-Post:

Hi,
 

I was offered ECT years ago for depression. That was before it was known for cronic pain.

My thought is that most everyone that has RSD deals with depression so if they could get into a therapist office and get the diagnoses of major depression then they may be able to get the ECT.

It sounds like you are on the right track Mike.

Ada

Wow! That's wonderful news!

Now, if you'll excuse me, a few questions:

(1) Specifically what procedure are you have done? Have you been told what anesthetic will be used?

(2) Did you get ECT approved solely on a chronic pain diagnosis?

(3) If "yes" to the second question, were you able to get insurance coverage for it, and if so, what hurdles if any did you or your doctors have to go through in order to get approval? (and)

(4) Again, if "yes" to the second question, were there any issues in getting the procedure approved through the health care institution where it's being done?

Please understand that I am very happy for you and wish you all the luck in the world.

Mike

And the answers to your questions:

(1) This will be a series of at least 12 RUL ECT treatments. This is based on the outer edge of what was reported in your articles and others where pain relief was achieved independently of depression. Average number of sessions seemed to be between 8 and 12.

Anesthetics being used are: Brevatol (short acting sedative that is dissociative) and Succinyl Choline (very short acting neuromuscular paralysis agent)

(2) No - like most RSD patients I can lay claim to both RSD and depression so the ECT treatments will be billed under depression, although the ECT specialist will be actively looking to achieve a positive outcome with both. I would have fought the battle (and I suspect that it would be one) to get it approved under pain mgmt only if that was the case, but didn't have to since I already had both.

Am off to get the prerequisite labs done today and will keep you posted on how it goes along the way if you're interested.

Thanks for the info. And, speaking collectively, we are most interested in your progress and outcome. Please keep us informed.

Mike

Gonna beat ya to the punch here Mike - am now scheduled for first treatment on Monday morning at 9:15. Wonder if I'll get any incremental pain relief along the way?!

:yahoo:

Good Luck
This is very exciting
I hope you have an excellent outcome :)

Peace
GnP

Thanks GnP! Am hoping the same on behalf of ALL of us out here in pain!

good luck
 

hoping to hear great news. I dont think I am going to do the transcortical stim at Beth Israel after reading what Mollymoms friend went thru

Cant wait to hear from you.

I am SO happy for you!!!!! I am in tears I am so happy for you!

On a note for myself, I am so excited to find out what I have to do! I am at my wits end with all of the pain, and having kids that I want to play with. I finally see hope! THANK YOU!!!!

Hi folks,

Am back after the first treatment today and just checking in to let you guys know how it went. And I'm fine, although I wouldn't characterize my first experience as a good one. Had nothing to do with the ECT, but was a real screw-up as far as anesthesia was concerned. Like I mentioned earlier, they give you two drugs - one is a fast acting sedative, and one is a fast acting paralysis agent. Unfortunately they didn't give me enough of the sedative this time, which meant that I woke up while the paralysis agent was still active. What that meant to me was that I had a VERY SCARY episode in which I thought I was suffocating to death and could not breathe and was desperately trying to tell someone about it. Once we got past that it was fine, but I have to be honest about the fact that it was very frightening!

Other than that I'm just very sleepy and have a few sore muscles - no biggie.

Am most definitely going to talk to them about the anesthesia problem on Wednesday and they are going to have to assure me that they will not let that happen again.

One other note here. As luck would have it, I began to experience significant pain relief in my knee a couple of days ago. That's not what I would have preferred here. Going into the ECT treatments I would have preferred that the pain be at least at normal levels - if not flaring above that. But it's already substantially down right now so we'll just have to see where this goes.

I wouldn't let the mishap with anesthesia stop me here and hope that others don't either - that was my fear in posting that part of the experience, but just felt it was best to be truthful. It can happen, but very rarely does and in this case the anesthetics are so very short-acting that it's probably not too surprising.

Anyway, they told me I might experience some muscle soreness, and yesterday I did so I just took an NSAID and let it go at that. But today I woke up so sore that I couldn't get out of bed without help. Am taking both a muscle relaxer and NSAIDs today and finally getting a bit of relief. I suspect that it's pretty severe in my case because I've been pretty disabled for the last 3 years and unable to do anything in the way of exercise or fitness.

But it's still severe enought that I've left word with the ECT folks that I won't be able to make the treatment for tomorrow (Wed.). Am hoping to get back on track by Friday.

Hi,
 

I just wanted to say that I do hope this works for you and maybe as you go along with the treatments it will get easier since you know what to expect now.

I'm glad that you are coming on to keep us up on how they are going. The more we know, the more we grow.

Hope you start feeling better soon.

Ada

It's now pretty obvious that the muscle soreness and swelling I've had today is not normal. I was in so much pain that I couldn't even raise myself off the bed earlier today. Apparently I've had a bad reaction to one of the drugs - the succhinyl choline specifically. We have a call into the doctor's office and plan to sit down with anesthesia folks to figure out what to do next here. In the meantime all I can do is to wait for it to wear off ...

Good news here is that this has nothing to do with the ECT and is just an independent reaction to one of the drugs being used.

Having talked with anesthesia I understand what happened now and why. The paralytic drug being used succinyl choline (or "sux" as it's often referred to) does have a known side effect of muscle soreness. Those of us who are or were athletes can expect to have that effect compounded by the fact that we have more muscle tissue and its denser as well. The RSD represents yet another level of compounded effect when it further magnifies a new pain signal. So you end up with a more severe case of muscle soreness than other folks will under both of those conditions, but it's not anything that is ever going to escalate into a potentially life-threatening anaphylactic reaction (which was my fear here).

Bottom line is that instead of going 3 times per week I'll probably only be able to go twice or maybe even once a week to give my body enough time to recover in between sessions. So I'll head back in Friday AM for my next treatment.

I am happy to report that I have indeed experienced a significant level of pain relief (however temporary it may be at the moment?). We'll see how long this lasts but its a welcome break from the kind of mind-jarring pain I'd been having for a long time prior to all this. It's way too early to be drawing any conclusions here - am just happy to have a rare break and time will tell if it's significant or not.

I"m so happy that it seems to be working at least at the moment! I am also happy that you got the soreness figured out!

I have been talking to the hospital were I live, and they are VERY interested in the ECT and RSD thing. They are talking to me alot and we are swapping info back and forth. So I am hoping that maybe if I get them interested enough they might just do a study on it, or something like that. So we will see were I end up with that. YAY!!!! I can't help but be very excited at the prospect of being able to get thins done.

That's terrific! I'm so happy for you!!

You might want to take them (hospital folks you're talking to) a copy of Michael's article and the others he has offered in PDF format. It's a pretty compelling series. Hope this helps.