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09-09-2008, 06:20 AM
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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) |
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09-23-2008, 05:16 PM
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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) |
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09-24-2008, 07:56 PM
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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) |
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09-25-2008, 05:30 PM
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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) |
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09-25-2008, 08:21 PM
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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) |
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10-22-2010, 11:38 PM
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#6 | ||
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10-22-2010, 11:46 PM
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Legendary
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Quote:
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
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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) |
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09-26-2008, 08:37 AM
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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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09-27-2008, 10:33 PM
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Junior Member
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doodlebug, you are not the only person who has had a hard time figuring out how to work this in. i think we are lucky in that regard. we started doing it while we were on vacation. my husband is retired (partly due to disability, of course.) i only work part time since our son is still young. so i think we have an easier time than most. even so, it is hard for us to get it in more than twice a day now that we are back and school is in session. and there are people who have written to me who don't have anyone to do it. so we need to figure out some creative solution. some day, maybe PT's will be trained in this and someone will come to your home or work and it will be covered by insurance, (OK, OK, I am seriously fantasizing here...) but until then, we're all just figuring it out. I love the dog idea. Maybe a specially trained mirror-therapy dog?
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| "Thanks for this!" says: | Burntmarshmallow (09-30-2008) |
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