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 02-02-2012, 04:29 AM #11
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fmichael fmichael is offline
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Quote:
Originally Posted by iguanabill View Post
Mike,

Go for it!

You once wrote the very nice article on ECT. I read it with interest among a group of other papers when we made the decision a few years ago (2008, actually) to try it. Frankly, it's the only thing that kept my wife going the past 3+ years. It never kept her pain down indefinitely, but it reduced her sensitization from an 8/9 down to around a 5 for much of the day, and she coped much better. She hated it and fought it, but we went back to it time and time again (more than 6 rounds). Still might have to return to it.

Did you or anyone you know try it? If so, what was the experience like in terms of success?

Hang in there...
Bill -

I can't thank you enough. It's wonderful to hear that it made such a difference.

Your wife is - to my knowledge - only the third person who undertook ECT - in part at least - as a result of that article. And it sounds like she had the best outcome of the three. In another case that was well-documented on NT at the time, the person had some initial relief but freaked after the 3rd or 4th round a friend pointed out that she was demonstrating some gaps in her memory, even though her doctor had advised her in advance that this was to be expected, and they they would resolve within six weeks after completing treatment. As they apparently did, but she was done with it the moment she became aware of the issue, and never made it as far as the 5th round.

Sadly, the remaining situation I was aware of concerned a young woman whose father had contacted me through the RSDSA after reading my article. RUL ECT was not even available in her area, so she went through a full round of 12 sessions of the old-school Bi-Lateral ECT (BL) where electrodes are placed on both temples, including that of the dominant hemisphere: if you're right-handed the left-hemisphere is dominant and vice versa. (So RUL or "Right Unilateral" would be more properly referred to as "Non-Dominant Unilateral.") In any event, she emerged apparently no worse for wear, but without any improvement in her pain.

And as set forth in my piece, when I added up all of the case reports and small studies, going back to 1957, it looked like roughly 70% of the participants had some improvement - as did your wife - while the remaining 30% had none. And while no one seems to have a clue has to who is predisposed to have a successful result with ECT, it's interesting when Ballerina notes that tDCS presents with the same 70:30 odds.

Now, a question for you, but first the set up: After I finished the article, my pain doc at USC recruited a psychiatrist who did their ECT work, and he was hot to trot on running it for pain, even going so far - if my wife's self-insured employer would pay for it - of using ketamine as the general anesthetic, even though that would mean I would have to do it on an in-patient basis, where not only was it hypothesized that the ketamine anesthesia would have a synergistic effect with the ECT, but a study cited in the article had shown that when ketamine was used as the anesthesia, there was absolutely no loss of short-term memory following "anesthesia clearance," which took roughly 72 hours. Unfortunately, as this moved up the chain of command at USC, all concern learned that in the aftermath of the 1975 release of One Flew Over the Cuckoo's Nest, Californians did what they do best, they passed an over-broad initiative the next year banning ECT in all forms (RUL had yet to appear on the scene) except in the case of certain specified psychiatric condition, including severe depression, and then only after three psychiatrists independently signed off as to the lack of an alternative, except for bona fide research work done under the supervision of a hospital's Institutional Review Board (IRB). And with that, my chance of having it done disappeared, where, even if my wife's employer approved it, my doctor told my that without funding for a proper study, it wasn't worth a year of his life to go through everything that would be required in order to obtain IRB approval from USC, for something which at best could result in a one-off case note. The publication of which would make it no more likely - as a practical matter - for another CRPS patient to be approved for ECT treatment.

So my question is, did your wife have her ECT done out-of-state or was she "lucky enough" to have presented with depression secondary to her CRPS on account of which the work could be done?

Then too, you say she hated it. I'm curious as to what made the procedure so miserable and whether she had BL or RUL?

That said, your feedback has already been appreciated more than you could know. Thanks again.

Mike
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