I know of at the least 3 people that have A.D.
I being one of them Mine came from an auto accident . Doodlebugs sadly hers came from failed surgery ... well surgeries more then one if i recall. and I believe Nikki was hit with A.D. from sucessfull brain surgery not positive but I think so.
You are not alone . I can not have any surgeries any more and I have a neuro stimulator implanted for my pain. as NO MEDS helpped with pain.and like you no doctors or neuros wants anything to do with me . Kinda stinks when they do their work and things turn out diffrent they toss ya to the curb like trash then when ya try to make things better ..find a diffrent doc and fill them in on your medical history... they act like you have cooties or something ( cant get to rude here) they are afraid to do any work on you. or in my case they cant because it will leave more permante dammage. but i have to truthfully and honestly say that geting my neuro stimulator has given back part of my life. It dose not take away all my pain but it takes the ugly edge off it. I have been reading the Neuro stimulator is being used to treat A.D. so maybe you could inquire about that as a possible option for you. And if i can help do not hesitate to private message me or post here. I wil be more then glad to help with ANYTHING!!
I am so sorry you have to live with this horrible monster pain eveyrday. But you are not alone not in the least not one bit. I will see if i can round up the others I mentioned so they can reply also. but first my pain pal I need to give ya lots of

Low pain wishes Kewl
PEACE
BMW

Hi Kewlbutterfly, Love the name
Take my hand, you are no longer alone

BMW had it half right, I had the MVD and 2 gamma knives, (I have bilateral TN- so gamma on each side) ALL the surgeries failed and left me with AD too.
I have the same sensations you do, but the other thing I have is this sensation that hundreds of bees are stinging me from the upper lip to the bottom eye lid. Like you say, it is a 24/7 unrelenting pain.

I am sorry your neurosurgeon didn't care enough to help you through this. It is a risk factor, I was told before the surgery. But, well -when you are in enough pain, you will try just about anything. I thought the slim chance of getting AD was worth the risk. Even knowing what I do now, and suffering with the AD on top of the TN, I would still do it all over again..... I HAD to try!

So many have found relief with the MVD , I am truly sorry you were not among them. I am glad you have found a neurologist who is helping you.
A good supportive doctor is key. I am so sorry for your pain, but again, know that you are not alone Anything I can do to help, just let me know~Nikki

Nikiki~
Thanks about the name. It is really a good feeling to know that you are not the only one out there with this horrible pain. Although, I would never wish it on anyone, not even my worst enemy. I know that this happened for a reason but I know I would not have the surgery if I had known what my outcome would have been. Yet, if I did not know the outcome and being in the state of mind that I was at before the MVD procedure especially if there was a chance for everything to be back to normal, I would have done it because I was so desperate to stop the pain. I am sorry to hear that you suffer from this as well.

Is there anything that you have found to help stop the relenting pain? My Neurologist has me on Dilantin 300mg, Nortriptyline 200mg, OxyContin 10mg every 12 hours, Zoloft 100mg and Ambien 10mg to help me sleep. As of Yesterday he changed my OxyContin, due to there no longer a generic being made, to Methadone 5-10mg a day. I am really having a rough day! I think it is from me stopping the Oxy. Anyways, I hope it will get better. I am trying to stay strong for my 3 children.

Keep in touch,
Rachel

I am taking Dilaudid 8mg 1-2 every 4-6; 2 ambien; and I have a pain pump that has Dilaudid in it apparently set to maximum with balcofen in it (muscle relaxer). At one pt. I was taking 240mg Oxycontin then I had MVD; did a 6 days in rehab (per my psychiatrist); walked out of there with NORCO; within a month I was back to 40mg Oxy 3x per day. I understand that oxycontin is best taken every 8 hrs. based on the bell curve. It starts wearing off after 8.
Ask ur doc about it. He may agree and I know it will likely make u feel lots better. God Bless;

I understand your pain, and your frustration. I ended up with ON and AD trying to find a cure for TN. Now, I have all 3. I did everything that was asked of me, and yet, I ended up in worse pain. It was hard to comes to terms with.

My husband use to say, Doctors only practice medicine... then when he was angry he would say, and I am sick of them practicing on you! It is so hard on those who love us isn't it? *sigh

Are you going to a pain clinic? I have always found more compassion there. It is vital to have a doctor you can talk with openly and honestly with about your pain, and how it is effecting your life. They are out there. I have two wonderful doctors who have helped me over the past 11 years.

WOW, that just hit me, typing that out... 11 years! Back in year one, I remember thinking I couldn't survive the day..... amazing what one can adjust to.

Keep talking ((Julz)) we understand Nikki

Thank u Nikki. I'm so sorry you have to suffer too. Tell me what r u doing for pain? And yes, read below about my pain doc.
I can't begin to tell u that it's ashame I am not the only one except that I feel this doc knew I would end up with AD. I am not the first. His comments that "O, my wife has it" makes u think he knows... he can cure me. Then later, after surgery you hear him talking to one of his India interns and say, "o, my x has that, why do you think she got the house?"

This doctor has a reputation for this as I was told by another Neurosurgeon. If only my husband would have taken 5-6 other Neurosurgeon's opinion; but no, he looked until he could find someone to do an MVD thinking it would help me. I came home; went to detox off Oxycontin and that's when my life was changed by the pain of AD. Now over a year later, I have problems with anger.

My brother in law just had surgery at a VA hospital and they took the wrong kidney and sliced his spleen and had to remove it. He has the kidney with two tumors in it. And, to make things worse, they have an immunity to prosecution.

We pay $30,000 for both of us to have health insurance and my pain doc says
with 7mg/day of Dilaudad per interthecal pain pump and 1.5 of miracaine (this is again a new med they are trying) that this is the best they can do. I have no more options. Nada, Bupkiss, nothing more anyone can do. I welcome any suggestions b/c i have a very large family who loves me. Please help me.

Thank you for all your support! I did ask my doctor about the neurostimulator and he said that nobody that he knows does the implant of this in the Northwest. It is a great thought though. I really am glad I am not alone!

As with you, the docs are all afraid to do anything else to help with the pain except for changing meds as needed. I have come to grip with reality and realize I am in this for the long haul. My work is a big help for therapy since I am too busy to think of the pain, which is awesome until I leave work and then when I get home from work the pain hits me hard. I am glad that I can still keep up with my three children and keep active in daily chores but there are times it just doesn't help and you need that extra support! Thank you!

I just replied to Nik-key yesterday and noted that I had a med change from OxyContin to Methadone, three days ago. Well, last night at around 2:30am I woke up to this terrible itching all over. I guess there is another thing to add to the Allergy list!!! This sucks, I am so sensitive to all the meds and end up with horrible reactions. I called the doc and now am waiting around the house til he calls back I hope it is soon! I can't stand the itching.

I hate this AD it really really bad and of course today it is 102 degrees F outside. Too hot for me! I am too young for all this (28) LOL! Hope your day goes well and at least somewhat painfree!

~Rachel

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.

My mother has TN and has had two cyber knife surgeries (kind of the same as gamma). She went to the Mayo Clinic and they suggested a stimulator, but this kind had only been done 15 times with 5 successes. Went to another neuro who partially severed the nerve. Now has AD on her face and especially in her eye. Did your eye give you much trouble. Has needle and pulling pains. Doctors are finally talking about using a stimulator. Can you tell me where you got yours and who did it. Also can you let me know a little more about the types of sensations you had with your AD?

Hi kaemansmom
I sent you an email did you get it???