Does anyone suffer from anesthesia dolorosa?

If so, how has it changed your life and what are you doing about it.

Yes, I do. I have had 2 MVD and 2 Cyberknife’s. after I had my 2nd CN in December, about 3 months later the numbness started on my lips and now it has extended throughout by whole left side of my face, inside of mouth and scalp. I didn’t think this could get any worse, but it did. My pain is worse and I have severe attacks more often. My face swells worse than before. I don’t know what to do about it. I am not getting any answers and I am so sorry you are experiencing the same. How did yours start? I was wondering also if anyone out there was like me. I need help and please if you find anything out, I would greatly appreciate if you would share it with me also. I am sorry I didn’t have any answers for you but good luck to you.

I'm so sorry for your pain. I truly think it is worse then the TN because at least with that there was a medication one can take. I had TN for 9 years. After 7, I had Gamma Knife, 2 years later I had MVD. No pain, until this happened. After 3 yrs. it is worse. My surgeon wanted me to go to a Dr. here in Ky. that does DREZ, but after I have checked into it, I think it is to risky. With the luck I have had, I just don't have that much faith in doing anything else. I have a go to pieces about once a week, the pull myself together and to on. But really we suffer in silence. No one knows what it is like. It gets harder all the time to eat. I cut everything tiny, even a hamburger. Nothing cold. I use a straw. I drool, It is also all over the left side of my head. My eye feels swollen. Especially at night. I have a hard time eating out because it has to be soft. Nothing crunchy, hard, chewy, etc. I hate this worse then the TN. There is never any relief. I also use a bite guard at night. I seem to clamp down and in the morning my gums are so sore. They stay that way. Another thing I have found is a Spearmint chap stick. I use one a week. Use it all day long. It is the only way I can stand my lips to touch. forget lipstick because I have no lips left. They seem to be swollen just enough that they are turned in. At least we can share it together. They don't comment on it because they have not answers. The trigeminal nerve is so severly damaged that there is nothing to be done at this point. I'm at a loss.

Put in search box… It also has another name that is starting to be used

Unfortunately I do. I have had 5 MVD's and 2 Balloon Compressions. I have had TN for 20 years now. Sometimes I think the AD is "firing up" more than the TN and it is hared to deal with the burning. I t has been explained to me that the AD is a result of nerve damage done to the effected side when the MVD's were being performed. I just suggested to Beekeper someting that I do when it is really "fired up". I hae a 5# and 2# rice bag with washable covers my mother has sewn for me and they are my closest companions at home. I simply lay them on my face and the weight seems to hwlp get me through the pain. Sometimes I need the 2# sometimes the 5# sometimes both at the same time. I sleep with one on everynight.

I am new to the site here so I hope its ok I am writing to you.

That is fine. What is a #2 or #5 rice bag. I guess I don't know. I too hate the burning. At least on all the drugs I kept it at bay. Of coarse the drugs made me crazy, but I kept the pain down. I have been to pain management and we tried everything. there is no drug that works, yet. Thanks for responding.

I am sorry for both of you. I am only a few months new to AD. I have been getting more depressed about it from the research I have been doing. That is what I was afraid of, this being permanent and there was nothing else I can do. I am sorry yall are going thru this but I am happy to find you and that I am not the only one! When I originally diagnosed I attacked my TN with my MVD’S. I really thought that was going to fix all my problems. I wish the best to both if you. I have had TN since '08 and I have been working full time and I have a very demanding job. I am slowing down and for the first time I am having feelings that I can’t work full time. I don’t know what to do. I really was hoping this was temporary. Please keep in touch with as I would like to continue to talk. I wish the both of you the very best and hope tomorrow is a better day. :slight_smile:

I also hope for you a better day. Quite honestly maybe working full time is better for you. I find if I stay busy it gives me something to concentrate on, then dwell on my pain. Are you in a position that you can take some time off just to see. I had had TN since 1999. Waited 9 yrs. before the Gamma Knife, then 2 more yrs. before the MVD. I will always think I waited too long, as well as the Gamma Knife damaged that nerve. But I truly don't think they know. If I had it to do over, I just don't know. I was in a very important job, and they brought in a new boss that was untolerable and I finally retired. I couldn't take the pain from TN and deal with her. That was 5 1/2 yrs. ago. I really should have worked longer, but I just couldn't. So as of Jan., I'm now on SS because I turned that ripe age of 65. With medicare things are different financially as well as living on SS. So that limits my options greatly. All we can do is try to lift one's spirits and hopes.

Wow, 9 years is a very long time. I only had TN for 3 years before I had my first MVD. I really tried aggressively to treat mine but it didn’t do any good. Did you ever have any relief from any of your procedures? I do agree about the working, that is what try to do is stay busy. I feel it is good for me. But it is getting harder and harder. At least before I had any procedures, I had high hopes but that is slowly going away. I am still young and I feel this is the time that my husband and I should be having more fun. I get so angry about it, but maybe that is good because it keeps me fighting. I hope you are having a good day and yes, we need to continue to lift each others spirits but it is nice talking to someone that really understands!!!

I’m sorry you are both suffering. I’m 42 and was diagnosed with TN when I was 25. I had my MVD on March 22nd and in more pain now than before surgery. My Neurosurgeon keeps saying it takes 6 months to a year to recover but I think it is AD. Everyday I regret having surgery:( I know that God is in control but I feel more depressed everyday:) you both are in my prayers.

Please let me clarify the 2# and 5# rice bag.... It is actually a kitchen towel filled with either 2# or 5# of rice and sewed on the ends and sides. My Mom made me covers that tie on the end of the original one so I could wash them as they can get pretty grimy with make up, tears from crying etc... They really help because you know how it feels when your face is burning and you hold your face with your hand? WEll this is weight from the bags and the texture of the towel laying on the burning area and it helps make it easier to deal with. ReneeC