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

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

I just heard back from my pain dr. at USC to whom I had written about what was going on this morning. He's offering to try and set it up through his pyschiatry dept., which would be great if it works out and they can actually do it.

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.

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