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

Hi Mike,

Your work was more than worthwhile. As a result of reading not only your article but the others you referenced I have become one of those folks that you were lobbying to just pick it up and try it. I have an appointment tomorrow with an ECT specialist and am very excited about starting these treatments for pain relief.

Will let you guys know how it goes. THANKS AGAIN!!

A quick update here - I got the "go ahead" here from the ECT specialist and will be scheduled for at least 12 treatments, depending on how they go. Just want to make sure that we hit the outer edge of the number of treatments that the various studies Mike found had indicated it would take to have an impact from a pain management perspective.

Am scheduled for a series of labs tomorrow, with 1st ECT treatment to take place on Monday - or Wednesday at the latest. Will be having treatments on Monday, Wednesday, and Friday of each week until we finish.

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