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!

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.

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

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

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?

I got AD a year and a half after the GK, the DR told me there was nothing he could do. I just try to hang on day by day. metal1

I must admit, I am a little confused. I seem to keep running across people who get AD from GK. They were trying to treat my husband's AD with GK. And they told us there were absolutely no side effects. Maybe it depends on where the GK is? As far as we were told, he was the only person with AD who had had GK to ablate the sphenopalentine nerve bundle. All the rest (about 16 or 17 as of last January) had had it for atypical facial pain. It did not work, but it also didn't seem to have any side effects--for him.

I was always lead to believe and most everything I have researched about A.D. This includes my neuros and pain doctors over the last 9 years... that once you have A.D. any surgery is pretty much out of the question such as gamma or m.v.d. I see more often that people get A.D. from those types surgeries failing or from complications from those surgeries . I myself am in a corner as my leads have slipped with my neuro stim and I am told no one should work on me ..I meen no one should attempt to adjust my leads as it will make more permant dammage ,make things worse. It is hard to even find a neuro that will see me a second time once they find out I have a neuro stim and the leads have slipped. even doc who put it in says he wont go in and fix as more dammage will be done and things will be way worse then they are now. so I am stuck .
Which is a big issue with those of us who have A.D. and why mirror therapy looks so dang wonderful and gives hope when there doesnt seem to be any.
I am curious why a doctor told you and or your hub that gamma would help a.d.?????? I am actuly kinda of suprised to say the least to hear a doctor would say any surgery like gamma would help A.D. ????

Taylor check your message box here ...top right directly under your name

Hi, Same thing, cuties, give it time, what time to figure out how to survive?
My insurance company says I can't take fentanyl cause it is an off label use.
Can we petition the drug company to take the word cancer out or add brain injuries in? I'm so upset today... I can't cope anymore. I lost all my friends.
My family is mad at me; my husband of 27 years resents me or maybe it is himself, because the first 6 years the neurosurgeons were telling me not to get the surgery and then my husband found one who would.
I am so sorry for all of you in here that share this disease. This should be a disease they do on people who molest children -- now wouldn't that make criminals think thrice? AW, I don't mean to come in on my first time and be balling like a baby cause I realize finally I get it, no one wants me, loves me, but u know they do, they just can't cope either. I say we write our congressmen; write to Obama, these doctors take an oath that they will do no harm. What I understood is that if there are a-typical symptoms MVD is not recommended. I just had a pain pump put in, for what? so I could have another scar? I'm venting and please I don't want anyone to hurt. But I hope it is safe to vent. At least no one in here will scream at me b/c I'm crying or in pain. The new pain doctor I am seeing, well his PA called me an addict a few weeks ago. What? It still bothers me. The doctor said he would see me and not she. When I called in for a refill of my pain meds. Instead of 1-2 every 4-6 she gave me 1 every 8 hours. why? I'll have problems getting a refill with my insurance company this month at least. She just graduated this past May. She put Clonodine in my pump and I went from 130 lbs. to 190. in a month or six weeks. My husband had to take me to Kohls to get pants bigger and bigger. Now I read that it is a topical. Has this happened to any of you? Tegretol worked for me when I had TN, I only lost short term memory and most of my expensive jewelry what hotel I was staying in what room, it was horrible. ok, this is the end of my own little pity party. I'm sorry if I offended anyone, but I would be happy to hear from anyone. I know I am not alone and tho it is little comfort, it is when I am not so pitful as I am today. I got this when I was 40; lost my underwater dive career in film and photography, my friends and some family and now my 76 year old mother is complaining of the same symptoms. Drs. told me I was too young to have it. Now my research tells me infants can get it. So drs. don't know everything. But it would be nice if they would treat us better.