Hi. Thanks for the support! In the interest of time, I've responded to some of your specific comments in blue.

Mike

Two quick follow up points.

A couple of people have asked my why I'm waiting for a prescription before ordering the equipment. The answer is that it's no different that getting a wheelchair, anyone get buy one, but if you itemize your deductions (and they aren't annihilated by the Alternative Minimum Tax) you can probably claim an exemption for an reimbursement medical expense. (And in my case, it means waiting a whole week.)

And as far as Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73 http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf is concerned, the takeaway point from that article is that 2/3's of the people with RSD/CRPS will have something ranging between loss of executive function and "global cognitive impairment," e.g., "dysexecutive syndrome" and some memory impairment, INDEPENDENT OF MEDICATIONS.

So if the right electrical stimulation to the brain - be it tDCS, MCS or RUL ECT - can actually STOP the "abnormal thalamocortical activity" of RSD/CRPS AND ITS ASSOCIATED ILLS, then why not?

Mike

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

Mike,
Would it be possible for you to document the steps you take for the tDSC. Frankly, I find the whole 'at home' procedure pretty intimidating. Ballerina has written some great posts but for me personally, it might be easier to follow you every step of the way.
I had talked to the docs at Beth Israeal a few yrs back but did not pursue the study. I am wondering if at this point the study would be better or going your DIY route.

Thanks
Liz

The original Beth Israel study is closed although the lead researcher Dr. Helena Knotkova told me she was considering another exploring the effects of longer treatments.

The problem with studies is that you are bound by their protocols which may or may not work. If the particular protocol does not work the treatment may be abandoned prematurely when another protocol might yield better results.

I can understand the intimidation factor. I was nervous prior to my first treatment at Beth Israel but was immediately struck with the simplicity of the process. It is very similar to a TENS unit.

Don't let intimidation keep you from trying it.

Mike,

We're in California, not far from USC, and we had her ECT done in the state. She definitely suffers from depression associated with her pain, but she was also treated once for depression before she developed the horrendous pain. I don't think the prior treatment was an issue; she clearly was distressed and suicidal, and had failed quite a number of antidepressents (which were taken for pain more so than depression). The supervising ECT psychiatrist was very good to work with, and recognized he had essentially two choices: treat a live person or learn about a corpse later (sorry to be so blunt). Our insurance covered it without hesitation (I'm at a private health science university with a PPO).

She has had more than a half-dozen "rounds" of treatments, but some were just 3-4 treatments before she stopped them, whereas others were 8-9 treatments followed by 4-5 maintenance treatments with increasing intervals. It kind'a depended on what we talked her into. I think she would have fared better had she continued with regular maintenance, but she always insisted on no more...until 3-4 months later she'd be in such bad shape she was ready to give it a try once again, which meant starting over.

My wife had both unilateral and bilateral ECT. The initial treatment started with bilateral, I believe because she was so suicidal they wanted a faster response. Later, they were giving her unilateral...and then we began asking for bilateral to get a stronger response more rapidly, which I believe we saw.

The memory issues were there, more so for the first few rounds (she seemed to tolerate memory stuff better with later rounds), but they always resolved just fine, far as I'm concerned. My wife insists she has memory issues, and she certainly does have "gaps" within the last 5 years since falling into her chronic pain crisis. However, her current working memory and memory prior to the last 5 years seems fine. I often remind her she's got a number of potential memory-challenging factors, so it's hard to pinpoint the worst culprit; these include 1) chronic pain; 2) long-term benzodiazepine use; 3) ECT; and 4) boatloads upon boatloads of ketamine. All of these are associated with memory problems. She functions just fine today (with regard to memory, that is, and not much else), so the ECT has caused no physical harm (emotional harm is another issue...more in a moment). Frankly, I wish she would magically forget EVERYTHING from the last 5+ years. I found a couple of case reports where a chronic pain patient became amnesic and--bingo--the pain disappeared. I know you're well aware of how ECT is thought to work, but for the sake of others, I'll say that memory effects could be involved with the efficacy for pain (in addition to changes in blood flow and neurotransmitter production and distribution; collectively these can disrupt the established pain pathways while reorganizing the brain). I felt her most noticeable improvement came after 4-6 treatments when I would begin to see some memory issues. The more memory issues, it seemed, the better the pain reduction.

Having mentioned ketamine, let me add this. After the initial few rounds, I talked them into using ketamine for anesthesia, hoping it would facilitate efficacy, but it was a bit hard on my wife to wake up confused and feeling weirded out for a portion of the day. She was already extremely stressed by the procedure. At one point we stopped the ketamine and went back to other options (I forget which), and I'm not convinced the ketamine (usually 100 mg) made things any better.

Finally, there were several things that provoked her animosity toward ECT; these included: 1) the personal debasement she felt, in part from her perception others thought she was crazy (not true); 2) the loss of control she felt, especially when the mask (anesthesia) was placed over her face, which brought on memories of a terrible teenage event; 3) the i.v. needle pricks, of which she has had hundreds, making her veins difficult to work with, so we sometimes had a PICC line placed to reduce this (I got real good at changing them myself); and 4) fear that family and friends would learn of the treatments. At this point, she becomes hysterical if I even mention ECT. These are all unfortunate, because the treatment was decidedly more patient-friendly than a number of other procedures she underwent.

I'd better add one more thing. I think she's alive today only because ECT kept her going, and I think it's a good way to set back the sensitization, buying us time to explore other options.

Sorry to write so much. I can only hope that someone reading this (and not just Mike) might be helped in some way.

Mike,

Since you are interested in restoring lost executive functioning might I suggest that after the first round of treatments you reverse the electrodes, that way getting both sides of the brain.

Although tDCS seems to be more effective with upper limb pain the positive effects on executive function seems to be independent of limb pain.

I hope and pray you get the relief you so deserve!!!!!!!!!!!!!!

Ballerina...what do you mean by reversing the electrodes? Reversing with respect to hemisphere (anodal stimulation of both motor cortices), or changing to cathodal stimulation (the black lead over the motor cortex and red lead on the forehead)?

My recollection is that anodal stimulation decreases pain, whereas cathodal stimulation increases it, at least over the motor cortex. I'm also recalling that temple-to-temple stimulation can help executive function; I believe the instruction manual for the Fisher-Wallace stimulator illustrates this electrode position.

Iguanabill,

I have just begun a protocol of reversing hemispheres.

For clarity for all here are details.

I began with anodal stimulation of the motor cortex and secondary somatosensory cortices (M1 and S2, the red over the auditory canal left side of head.) The cathode (black) is placed on the forehead above the right eye.

I just began the new protocol of reversing hemispheres. (Anode above the right ear and cathode above the left eye.)

I did this for two reasons. My CRPS journey began in my left limb and over a very short period of time began in my right arm, while at the same time vanishing from my left limb. I have retained a small area of sensitivity on my left shoulder which is only about the size of a nickel and occasionally a bit larger than a quarter. Given the fact that the entire brain is effected by CRPS, regardless of the side of the body effected by pain in addition to the concern that the small area of sensitivity could broaden its grip I am hoping this protocol will yield additional improvements for my and could prevent an encore appearance of CRPS in the left limb.

When I first received tDCS at Beth Israel it was suggested that I could return for additional treatments, which would include maintaining the same electrode placement but switching the electrodes. I have not tried that particular protocol.

I too recall that temple to temple stimulation can improve executive function but I have not yet tried that particular protocol.

I have a sneaking suspicion that Mike may beat me to that protocol.