Hi,

I was all set to have my MVD next month but after a week of being unable to eat or drink (not to mention a few trips to the ER for IVs) they decided to do a radiofrequency rhizotomy right away.

So now I have traded the pain for numbness. Well, for most of my face this is true. It is day four and my lower left lip and tip of my tongue have a strange sensation. It is not painful as much as tingly/burning, but very very mild. Is this just uncomfortable numbness that I will get used to or is this the start of anesthesia dolorosa?

When I got home from Mayo clinic, it wasn't long before the side with the MVD and two craniotomys started to teach me all about burning. We called my neurologist but were not even able to get any straight answers. No one had talked to me about A.D.
It's been about eight yrs. now and the burning turned into a hell on my face.That side "L" became totally numb BUT with a grabbing, burning, severe
pain 24/7. I take about 20 pills a day even now, with neurontin that is 3600mg.per day. The nerves move around constantly and when they get behind my eye it really hurts.
This is my truth, none of us are alike when dealing with this disease.
Bless, Doodle bug7

I haven't had a rhizotomy of the Trigmeninal nerve, but I've had them to the nerves in my facet joints on my spine. Following the procedure, it is common to experience an increase in pain which should subside in time, in my case it was as long as six weeks. I suggest that you call your doctor and ask him if what your feeling is a result of the procedure or if it indicates another problem. Please do so asap before the holidays interrupt all contact so you can get some answers.

Hi,

Thanks for your answers and sharing your experiences. I have heard that there can be uncomfortable numbness after a radiofrequency rhizotomy that lasts a few months. I am supposed to be coming off my meds but if there is a chance this is AD I really don't want to start reducing!

Great idea on calling the surgeon before the holidays! Sadly he is already gone but will be back next week.

I guess to clarify my question, would AD start mild and only in one small area and eventually get worse? Or is it a sudden onset in the entire area?

Thanks for your help!

I've had AD since 1988 as a result of the "Shingles" virus that damaged my facial nerve. I have total numbness over the entire right side of my face with the crawling sensations and sometimes the numbness becomes extremly tight ( like a vice on my face). I have tried all the meds with no sucess. It's like being tortured 24/7. Thank God that I have no pain so at least I can work. Has anyone here had any sucess with treating AD?

I can't answer the question about AD starting as a mild burning then getting worse. But I did have a radifrequency rhizotomy in 1998 and I remember I did have some burning and aching that I worried might be AD. It wasn't constant and I used a rice sock (an old sock with rice in it that I heated in the microwave) to ease the pain. And it did go away. I think we delayed decreasing my meds for awhile but I did get off them. The numbness was very uncomfortable but it does ease in time. And it was comforting after awhile because I felt protected from the TN pain.