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Old 01-08-2011, 07:04 PM
sadiesmom sadiesmom is offline
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Join Date: Jan 2011
Location: Metropolis,IL-home of Superman!
Posts: 2
10 yr Member
sadiesmom sadiesmom is offline
New Member
 
Join Date: Jan 2011
Location: Metropolis,IL-home of Superman!
Posts: 2
10 yr Member
Default Re:anesthesia dolorosa

I can relate SOOOOOO well to just about all of you. I am new to the forum, so this is my first post. I have trigeminal neuralgia which was treated over the past few years with nerve blocks (pain had returned before I got home from pain mgmt clinic),gamma knife surgery, also known as stereotactic something(can't remember),twice.Each time it worked for about 2-3 months, then returned in another branch of the nerve. After that I had radiofrequency lesioning to the nerve, which worked right after the surgery and into the next day. After that it crescendoed quickly and violently to a level I had not known prior to that. Went to see the anesthesiologist(!!!) that put the huge needle in my face and dug it around in my cheek during which I was awake off and on,(it had hurt so badly it was like sheer terror), and he told me I had anesthesia dolorosa.Since then I have only had infusions of lidocaine, now every 2-3 mos., and I have not heard anyone else here say they have had that.He has suggested that nerve stimulator you have talked about, Burntmarshmallow. I have finally decided to try it. Initially, stimulating that area was the LAST thing I wanted to do, but after reading all this, I understand better about how it can work, and I want my life back more than I can say.I am a registered nurse who cannot work because of the pain and med effects. I love what I do and miss it so much.I am taking Lyrica, among many other things, but it is the one that has taken my ability to think well away. My memory is awful, I can't concentrate well, can't process information as quickly or as well in general,I don't have any sense of the passage of time, can't make decisions well, and am in a fog sometimes. I do take a stimulant drug to counteract these things, Vyvanse. My question to you is: does Medicare pay for the surgery and the stimulator, since it is an off-label area in which to use the device?
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