Hi Everyone,

I'm writing in hopes that maybe some of you maybe be able to help lead me in the right direction - or tell me if I'm doing something wrong. I now have Anesthesia Delorosa and I don't have a clue what to do, all I can tell from what I'm reading is that this is the worst thing that could have happened.

I started with my first TN symptoms in 2006 and my first mvd surgery at Duke in 8/2007. Everything was fine and my husband I moved to Tampa, FL in 11/08. In early March I started getting little shocks at the trigger point on my chin when it was touched or wind blew on it. In early April I woke up on morning with full on TN symptoms back at full force just as they'd been before the first surgery. I was admitted to St. Joseph's for one day for a CT, MRI and MRA and saw a neurologist for all of about 10 minutes. He basically told me that the teflon sponge and shifted and was going to need mvd surgery again and that they did not have a surgeon at that hospital that could do it. I left there and made an appointment with Dr. Van Loveren the Head of Nuerology at USF Tampa General Hospital and one of the most prominent neurosurgeons in the country. So of course, I had nothing to worry about. I listed to them when they went down the list of side effects and that they might have to sever the nerve and of course.....the very rare chance of anesthesia delorosa. I was fixed the first time and returned to normal life, and I was in great hands, so I didn't pay it any attention.

The anesthesia delorosa started 4 days after surgery and it's constant. Every hour, every minute, every second of every day. When I went in to have my staples removed the surgeons assistant prescribed 400mg of neurontin a day. It's been 3 weeks and that hasn't done a thing. In the past week I started uping the dose as my neurologist has advised me in the past and I'm up to 1,000 mg a day - still nothing. I've tried capcazien topical cream - nothing. Yesterday my husband and I did a mirror therapy that we read about from a member here, still too early to tell on that. I find if I take Ambien when I go to be at night, when I wake up in the morning the pain is a little lower and I make it a little longer into the day until it goes up from a 5 and then to an 8 or 9.

This is all very new to me. I'm trying to read up as much as I can, but I could really use some help. Where do I go next. Back to a neurologist? Is it better to find someone who deals more in pain management? What can I do to just get through the day right now?

Your help would be GREATLY appreciated.

Sorry you are here for such an ugly pain as a.d. But I wanna welcome you to Neuro GandBarrieand say there are many many great caring supportive understanding folks here...in all the forums.

I have A.D. and I found my pain management doctor helped me a zillion times more then any of the different neuros I seen.
I got No help from the many meds and was first in U.S.A. to have a neuro stimulator also called a P.E.N.S. implanted for my pain. having the implant also involved a neuro but it was my pain doctor who came up with idea and went to great lengths ,never gave up on me. Today I am ALIVE thanks to him and have part of my life back am able to knock the ugly pain monster down to a bearable level when it gets wicked.
I am in Daytona Florida .If you wanna talk ,have questions or anything you can think of that I can do to help let me know...can post here or message me by clicking on my name and sending a message. I know others will come along and you will find you are not alone and you will find great info and support here. This site is filled with the greatest people I know!
Sending low pain wishes and blessings to you GandBarrie. Hope to hear from you soon again welcome to Neuro Talk
PEACE
BMW

P.S. wanted to add..do you know what your triggers are? Like moving air or cold? try to avoid them . I wear a bandanna when it is breezy, I sleep in recline chair so I dont roll on that side of face drink with straw etc.... stuff like that to help not wake up the pain monster. hot and or warm baths help me allot too. hope this helps you

It makes me so sad that you are dealing with A.D. I have been trying to cope with my A.D. and as you said, every minute, every day. My pain seems to go up in the evening although it is with me 24/7. I had a failed microvascular
decompression in K.C. the first time followed by two balloon compressions.
Nothing helped me. Out of sheer desperation, we went to Mayo clinic in Minnesota. I was there for three weeks. By that time I weighted ninety eight pounds. I wouldn't eat or talk. I was dehydrated and very weak. The T.N.
wore me down to a shell, as it intended to do. Three days from when we arrived
I had surgery to partially cut the nerve. It was done and it threw me into a spin of torcherous pain and I wanted to die. I was sent to the pain unit where one nurse has only two patients to take care of. The Doctor told my husband that I would need to go back in surgery where they severed the nerve. I am numb on one side but always feel the nerves moving around. The pain can shoot up anywhere, any place. I tried the pain management Docs. One got me addicted to Oxycontin and the other one got me addicted to methodone. My family Doc. now handles my meds with no narchotics.
I found a great Doctor in Kansas city that used to work at Mayo. Dr. Lemons
is a psychologist that works with those who are dealing with cronic pain.
It is actually a self hypnosis for relaxation. It isn't narchotics, it isn't pain blocks that don't work, it is within yourself. I'm not saying that it is some magic trick but it can teach you how to cope with the pain a little easier.
Believe me, I have been where you are from A---Z. Blessings, Doodle bug