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Old 02-03-2012, 10:58 PM
iguanabill iguanabill is offline
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Join Date: Jan 2012
Location: southern California
Posts: 26
10 yr Member
iguanabill iguanabill is offline
Junior Member
 
Join Date: Jan 2012
Location: southern California
Posts: 26
10 yr Member
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Quote:
Originally Posted by fmichael View Post
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?
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.
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ballerina (02-04-2012), fmichael (02-04-2012)