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09-08-2008, 09:27 PM | #1 | ||
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Junior Member
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Hello, Everyone,
I found this thread when I googled Anesthesia Dolorosa. My husband has had AD for the last nine years. He has tried gamma knife and had no luck. Otherwise, after trying various drugs and drug combinations he used such high doses of Neurontin that he was asleep or on stimulants all of the time. (Much bad cardiological fall out from that. Don't try it.) And he was still in pain a lot. At any rate, in July my brother-in-law sent me this article from the New Yorker about sensor syndromes and mirror therapy. At the end of it, this docotor, V.S. Ramachandran suggests a kind of mirror therapy for a woman who was suffering from numbness in her scalp due to shingles. We realized that the same therapy might work for AD, as long as it was done on the face. It involves using a non-reversed mirror and having someone else touch your face while you are watching them do it for 10-15 minutes several times a day. I know this sounds wacky, but we figured, "what the heck?" Even wackier is that it seems to have worked. My husband was pain free within 2-3 days and Neurontin-free within five weeks. We are hoping this might help others and want to spread the word. to anyone you know who is living with AD or treating it who might be open to it. Let us know if it works for you. We still can't believe it! Thanks and Blessings. |
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"Thanks for this!" says: | Nik-key (08-21-2009) |
09-09-2008, 06:20 AM | #2 | ||
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Junior Member
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Quote:
Last edited by Curious; 09-09-2008 at 07:14 AM. |
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"Thanks for this!" says: | Nik-key (08-21-2009) |
09-23-2008, 05:16 PM | #3 | |||
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Member
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Hello Taylorschott, I have a question. Did you say that your husband had a Gammaknife after he had A.D.?
My neurosurgeon never made any contact with me after the surgery where they severed the trigeminal nerve. He dismissed me from Mayo clinic after three weeks and that is the last time I had contact with him. I was never informed about A.D.possibilities. When I started having pain and burning, my husband would try to get some kind of answer, calling his office. I guess what happens after the surgery, they don't want to hear it! That was five yrs. ago and the A.D. pain is relentless, everyday, every hour, every minute, every second. What a nightmare! Truely a believer, Doodle bug7 |
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"Thanks for this!" says: | Nik-key (08-21-2009) |
09-24-2008, 07:56 PM | #4 | ||
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Junior Member
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hi doodlebug. we had a similar experience with my husband's neurosurgeon, who was horrible afterwards. the gamma knife was for the sphenopalentine nerve bundle and we found it through a pain center. as far as we know, he was the only person ever to have it for AD, at least as of last January. And it did no good whatsoever. The others who had had it successfully had atypical facial pain. if you read the Gawande article, though it makes sense as to why it would not work for AD, assuming that AD is a sensor syndrome as he calls it. Not sure if that answers your question...
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"Thanks for this!" says: | Nik-key (08-21-2009) |
09-25-2008, 05:30 PM | #5 | ||
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Junior Member
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Hi all, I'm so sorry to here about everyone's pains.
I myself had the MVD surgery back in 2004 to remove a tumor that was basicallly connected to my trigeminal nerve. The Neurosurgeon removed part of the tumor, but was unable to remove all of it due to the damage that would be caused to the nerve. Unfortunately the nerve was damaged and since the surgery I have been numb on the entire left side of my face. I also am having the electric shocks on my face and the feeling of several bees stinging my face in several locations. Can anyone tell me if this sounds like AD, I really would like to know so that I can figure out how to deal with this. I am INCREDIBLY happy to know that there is other's that I can talk to about this. If anyone has any advice for me I would truly appreciate it. Thanks and God Bless! |
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"Thanks for this!" says: | Burntmarshmallow (09-26-2008) |
09-25-2008, 08:21 PM | #6 | ||
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Junior Member
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If I had AD, I would try mirror therapy before anything else. No drugs, no surgery risk. And it controls pain better than anything else we've tried.
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"Thanks for this!" says: | Burntmarshmallow (09-26-2008) |
10-22-2010, 11:38 PM | #7 | ||
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New Member
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You mentioned in a different thread that you describe your success in your blog. Where is it located? Thank you for the bit of hope you've given me.
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10-22-2010, 11:46 PM | #8 | |||
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Legendary
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Hello painpaul and welcome to NeuroTalk.
I don't know if you noticed, but taylorschott posted about his blog back on 09-09-2008. I did look, but the last time they signed into NT was the next day. Just letting you know because they quite probably will not see your question. Hopefully you will get replies from others, however.... so I hope you soon get some answers to your concerns.
__________________
Eastern Australian Daylight Savings Time and my temperature . |
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09-26-2008, 07:59 AM | #9 | |||
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Member
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Taylorschott, I have never had anything done for my A.D. because I read that it could actually make the pain worse. I cannot imagine having worse pain than I do now. I'm going to try to get the mirror thingy going. My problem is getting my husband pinned down. He is the only one around. He works hard and when he comes home he is tired and wants to rest. I have 7 dogs.............maybe...
No, they are too busy eating and sleeping. The cat got offended when I kept complaining about his claws. Bless you and your husband, Truely a believer, Doodle bug7 |
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"Thanks for this!" says: | Burntmarshmallow (09-26-2008), tied (03-07-2018) |
09-26-2008, 08:37 AM | #10 | |||
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Grand Magnate
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I know of a member here that did mirror therapy for phantom limb pain it went very very well for her. I also watched a video of mirror therapy I would do it in a heart beat!!!!! Both of you are in my prayers!
cltmet70 yours dose sound like A.D. . I have A.D. but I also have a neuro stim implant to help controll the pain. Bless you all and many low pain prayers too. PEACE BMW |
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