I'm interested in knowing your experience.

Hello. I can't believe that some other person has said those words. Anesthesia
Delorosa. I have had AD for 5 yrs. The reason is that I have it is because I had one Microvascular Decompression in K.C. that failed and two more brain surgeries at Mayo clinic in Rochester Minn. As a last resort,they severed the trigeminal nerve. Now the left side of my face is numb but yet I have pain 24/7. This pain is not a scary pain like T.N. but gets pretty severe at times. I still see different Doctors for the various problems that A.D. has caused. My eye is numb so I still have to go to my Ophthalmologist as my eye no longer produced tears. He has put plugs in and out and finally we got it as right as he could.
My ear now has a tube in it as I get fluid laying in it occassionaly. My left nostril
is dry and I get sinus infections every few months.
My ear has also lost some hearing.
To be truthfully honest, this has been a nightmare. A very devastating event in my life that came out of the blue. If I had a choice to make between A.D. and T.N., I would absolutely choose the A.D. It has no lightening strikes in my face that made me petrified like T.N.
The A.D. pain is , at times, like the little nerves move around in a kind of burning fashion. Sometimes it is like grabbing and tightening. At first it would
hit my lip like the nerve jumped. It is really painful when the nerves behind my eye start hurting.
I take Neurontin, Lyrica, hydroxizine, Paxil, Amytriptiline. I used to be on narcotics like Methodone and Oxycontin.
If you have questions, feel free to ask.
Truely a Believer
D. bug7

I too have AD caused by surgeries and damage to the nerves.
AD can be just as painful as TN in it's own right. It doesn't have the electric shocks, but it is a constant never relenting pain. It just wears you down.

My AD pain of course encludes numbness, but along with that my eyes has excruciating pain and from just below my eye to the top of my lip it feels like hundreds of bees are stinging me, all day, every day. I also have sensations like pulling and heaviness. Like TN, certain things can "trigger" these sensations to increase. Cold and wind

hope this helps you? Nikki

Nik-Key,
You are absolutely right about the pain from AD. The worst part is knowing that it will be like that the rest of your life. I was never told that this may happen .
The left side of my face is numb and it is hard to get use to it. When I first came home from Mayo I woke up in the morning and had the feeling that the side of my face was gone. I screamed in disbelief and told my husband that I didn't think I could live like this. He held me and I screamed with tears rolling down my face. It was devastating to end up like this. I feel for you and hope very much you don't hurt anymore.
Little Angels will be looking over you. Truely a Believer,
Doodle bug7

Csabia, Would you tell me what your interest is with us describing Anesthesia Delorosa? Do you or some one you know have it? Boy Howdy, I hope not.
Truely a Believer,
D bug7

I am following this thread as well....I am considering an MVD, and cannot find decent, thorough, first person descriptions of if, just understated PHD-speak, for what sounds like a confounding and very difficult disorder.
If you don't mind, I, for one, could really benefit from what you have to say, as I try to make my own critical decision regarding surgery.
Thank you for anything you can share. It could really help.
Gratefully,
Mylastnerve

I have had ATN and TN since 07/06/06 at 6 am. I was officially diagnosed on 07/18/06 and was in so much pain from this monster pain I was desperate for a cure, an answer, anything that would help. The neurologist I first when to tried me on all the usual meds and med after med I had allergic reactions to. I was getting depressed and thought that I would never have a pain free life again. I got online and found a local Neurosurgeon that does hundreds of this procedure called a MVD. The doctor pressed to me that this was my only option. I read the risks (it did not say anything about AD) and knew that the procedure would keep me pain free for months to years. I signed up right away and my surgery was scheduled for 08/2006. I figured like you are probably now, why aren't people signing up for this potential cure?

Well, my surgery was supposed to be 4 hours long and I was to stay a few hours in ICU and 3 days in recovery. My surgery was 5 hours and I almost lost my life on that table. I was told later that my main artery wrapped several times around that 5th cranial nerve. He had to "make" a tool to get back to the end of the artery. I lost a lot of blood and was in ICU 36 hours and stayed in the hospital 7 days.

When I woke up from surgery I had a numbing feeling, but still felt the pain on my left side of my face, gums and tongue. It was weird like I went to the dentist and the Lidocaine was wearing off kind of feeling. I cried and cried but had hope in what the doctor had told me was true. I couldn't have been more wrong. The surgeon had told me that it was normal to feel this but to give it two weeks before going away, after two months visit he said give it 6 months. I will tell you to this day I have that and know now what it is called Anesthesia Dolorosa.

After all that I still had to go through lots of different meds and ended up on taking: Nortriptyline, Dilantin and a small dose of OxyContin (10mg). I am still not pain free but I am at a level of pain I can deal with. I believe that if you can keep your mind busy then it will bet better in the long run. I find that at my work I am so busy in a day that I tend to not notice the pain until I get off work, am bored or trying to go to sleep. You definitely need good support and lots of optimism as this is a long road ahead.

For me the AD pain is constant, varies with stress, cold, wind and just touching or brushing up against my face. Warmth doesn't really bother me that much. I do feel tingly prickliness all the time. It is frustrating because I know now that this will NEVER end. I have anxiety attacks at night and have to take sleep aids to get to sleep. The worse thing is that I am still having the TN shocking pains. The doctor I see believes that the nerve was only partially damaged but was enough that it will not go away.

I think people should research MVD route because of the risks of surgery, the recovery and the fact that the surgery is not a guarantee as the surgeons will tell you for ATN it is 50% and TN 85%. This is a brain surgery and that alone is scary. I could have died on that table leaving my husband and three kids ages 7 years, 4 years and 8 months. That scares me just thinking of how close it was.

If asked if I would do it again? I would have, knowing how desperate I was to get rid of the pain. However, knowing the outcome of the surgery, I would not have chosen this route. I hope that through my experience that I can help just one person and they can help someone else. Remember we are together and not alone. Good luck in whatever you decide. Sorry, so long and wordy.

Kewlbutterfly,

Thanks for posting your story. I post on another forum and it seemed that for a short time, everyone was deciding to go for an MVD. Some had good outcomes, some not. I'm not considering one, but I'm always thankful to hear everyone's story because we are all so different and the information available, I feel, doesn't always paint the most objective picture.

I'm sorry that you ended up with AD. I have a small dose of it due to repeated foot surgeries and its no fun. I can't imagine having it from failed MVD. It is one of the major reasons I won't consider an MVD.

Take care, Ellena

I just posted about my experience with TN and AD. I would suggest to anybody that has TN to not go the traditional route of the MVD. Try pain management first. My pain management doctor has told me time and again that he wished I had come to him first with my TN. Just saying.

Crandies,
You are 100% correct that pain management should be tried prior to any surgery such as Gamma Knife, Cyber Knife, SRS or MVD. I did not think that any neurosurgeon would consider you for surgery without going through the pain management med trials. For example, Oregon Health and Science University diagnosed my ATN in 2006 but would not perform the surgery even at my request until I went through a second round of pain management and even then I had to go to UCLA Medical Center 2.5 years after trying many different meds with very bad side effects. But, everyone is different and some meds work for some people and not others - just like the surgeries. In addition, doctors are learning about TN and trying combinations of drugs. I'm glad that you have had some success with your meds because all the surgeries are truly major and have significant risks. After my MVD surgery completely resoving my original pain but causing new, constant burning pain in new locations (AD or deaffrent pain), I am in pain mangement again and have been on opiates for months just to get partial relief. Finding a good pain management doctor is almost as difficult as finding a good neurologist with TN experience. TNA has gradually built a recommended list of doctors or neurologists recommended by us patients but has not published a similar pain magement doctor list that I know about. Believe me when I tell you that finding a pain management doctor really familiar with TN is difficult because I have been to several over the few years. Most don't know that there is Type 1 and Type 2 TN and either start you on Tegretol or vicoden. Here is a trivia point that three pain management doctors have discovered independently on me - Tegrotol makes me dizzy, drowsy to the point of not waking without help and causes severe migraine headache. On the other hand, Lyrica worked for the shock-like pains but not the constant pain. Reading on this forum shows that every individual seems to respond differently to the meds and we have to keep trying to find what works for us.
I tried to say that I agree with you that pain management should be the first approach before surgery of any kind and that the great majority of doctors (especially family doctors) will initiate pain management before discussing or referring you to a neurosurgeon.Thanks for reminding everyone that pain management is the first line of defense for TN pain because new comers need this guidance.
Ron