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 05-30-2008, 10:41 AM #1
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And the answers to your questions:

(1) This will be a series of at least 12 RUL ECT treatments. This is based on the outer edge of what was reported in your articles and others where pain relief was achieved independently of depression. Average number of sessions seemed to be between 8 and 12.

Anesthetics being used are: Brevatol (short acting sedative that is dissociative) and Succinyl Choline (very short acting neuromuscular paralysis agent)

(2) No - like most RSD patients I can lay claim to both RSD and depression so the ECT treatments will be billed under depression, although the ECT specialist will be actively looking to achieve a positive outcome with both. I would have fought the battle (and I suspect that it would be one) to get it approved under pain mgmt only if that was the case, but didn't have to since I already had both.

Am off to get the prerequisite labs done today and will keep you posted on how it goes along the way if you're interested.
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Old 05-30-2008, 12:13 PM #2
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Thanks for the info. And, speaking collectively, we are most interested in your progress and outcome. Please keep us informed.

Mike
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Old 05-30-2008, 01:55 PM #3
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Gonna beat ya to the punch here Mike - am now scheduled for first treatment on Monday morning at 9:15. Wonder if I'll get any incremental pain relief along the way?!

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Old 05-31-2008, 05:15 PM #4
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Good Luck
This is very exciting
I hope you have an excellent outcome

Peace
GnP
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Old 06-01-2008, 11:25 AM #5
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Quote:
Originally Posted by Goodn'Plenty View Post
Good Luck
This is very exciting
I hope you have an excellent outcome

Peace
GnP
Thanks GnP! Am hoping the same on behalf of ALL of us out here in pain!
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Old 06-01-2008, 04:55 PM #6
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Default good luck

hoping to hear great news. I dont think I am going to do the transcortical stim at Beth Israel after reading what Mollymoms friend went thru

Cant wait to hear from you.
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Old 06-02-2008, 02:16 AM #7
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Quote:
Originally Posted by janism View Post
Gonna beat ya to the punch here Mike - am now scheduled for first treatment on Monday morning at 9:15. Wonder if I'll get any incremental pain relief along the way?!

I am SO happy for you!!!!! I am in tears I am so happy for you!

On a note for myself, I am so excited to find out what I have to do! I am at my wits end with all of the pain, and having kids that I want to play with. I finally see hope! THANK YOU!!!!
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Old 06-02-2008, 07:18 PM #8
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Hi folks,

Am back after the first treatment today and just checking in to let you guys know how it went. And I'm fine, although I wouldn't characterize my first experience as a good one. Had nothing to do with the ECT, but was a real screw-up as far as anesthesia was concerned. Like I mentioned earlier, they give you two drugs - one is a fast acting sedative, and one is a fast acting paralysis agent. Unfortunately they didn't give me enough of the sedative this time, which meant that I woke up while the paralysis agent was still active. What that meant to me was that I had a VERY SCARY episode in which I thought I was suffocating to death and could not breathe and was desperately trying to tell someone about it. Once we got past that it was fine, but I have to be honest about the fact that it was very frightening!

Other than that I'm just very sleepy and have a few sore muscles - no biggie.

Am most definitely going to talk to them about the anesthesia problem on Wednesday and they are going to have to assure me that they will not let that happen again.

Last edited by janism; 06-02-2008 at 08:54 PM.
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Old 06-02-2008, 07:21 PM #9
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One other note here. As luck would have it, I began to experience significant pain relief in my knee a couple of days ago. That's not what I would have preferred here. Going into the ECT treatments I would have preferred that the pain be at least at normal levels - if not flaring above that. But it's already substantially down right now so we'll just have to see where this goes.
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Old 06-03-2008, 09:23 AM #10
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Quote:
Originally Posted by janism View Post
Hi folks,

Am back after the first treatment today and just checking in to let you guys know how it went. And I'm fine, although I wouldn't characterize my first experience as a good one. Had nothing to do with the ECT, but was a real screw-up as far as anesthesia was concerned. Like I mentioned earlier, they give you two drugs - one is a fast acting sedative, and one is a fast acting paralysis agent. Unfortunately they didn't give me enough of the sedative this time, which meant that I woke up while the paralysis agent was still active. What that meant to me was that I had a VERY SCARY episode in which I thought I was suffocating to death and could not breathe and was desperately trying to tell someone about it. Once we got past that it was fine, but I have to be honest about the fact that it was very frightening!

Other than that I'm just very sleepy and have a few sore muscles - no biggie.

Am most definitely going to talk to them about the anesthesia problem on Wednesday and they are going to have to assure me that they will not let that happen again.
Hi Janism!
I sure can relate to waking up during surgery. I had to have an emergency c section done on my youngest son(He is now 28 yrs. old) I woke up, I tried to tell someone, anyone,"Hey I'm awake"!! I then heard the docs say, no.. pull him out this way(So, I knew I was having another son, by them saying, he) I too felt like I was suffocating!! I then felt pressure, my son was out, I was then knocked back out! When I was up and the anesthesia wore off, I told my doctor, was I dreaming? I was up for a while and heard voices, doctors talking, nurses. He said that he was so sorry that I woke up and that the reason being, my son was so small, that they had to give me light anesthesia. To this day, I am afraid of being knocked out. I tell my anestholigst this every single time. Even when I was haveing those stelliate ganglion blocks. They all reasure me that this won't happen. So, yes, make sure to tell them what happened. It seems like your awake for a long time, when, it's only for a few seconds, as they can see you move a little. Still, speak up and I am sure this will not happen to you again. I sure am happy that your fine now. Wishing you all the best! ~Love, Desi
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