This could be me. Please get in touch with me. I feel crazy at this point, all the doctor did was cover it up, and tell me to wait. It is a living hell that is not getting better. I need to connect with other people who have what I have. if you look at me you think I'm fine, when it is indescribable what I am feeling. And it never goes aWAY!!!!! ** Thank you, Linda **

teacher61

I am new to group. Nov 2014 Have Anes Dolor after MVD for TN. No success with blocks, constant cold/burning/problems eating. No doctor has answer. Any suggestions.
teacher 61

Welcome teacher61.

I have had two different nerve blocks - neither one helps. Sometimes I feel like gasoline has been poured on the side of my face, and lit with a match! I've even used my dog's skin cream for hot spots. The worst is the coldness when I can barely feel my lips and tongue. Had to have the heimleich maneuver several times from choking - cannot feel myself eat. I'm becoming a "not so nice" person. All I want to do is try to take something to make myself sleep, and stay away from everyone. I no longer join in conversations, or volunteer to help with anything. It is so hard to explain this situation to people because there isn't anything to "see". Also, my eye has really been giving me problems. After the surgery for TN, a nerve was accidentally moved, and I had have botox injections into my eye to bring it up into place. It looks normal, but I see normal many times. I am a senior citizen, raising a teenager all by myself on Social Security. I make too much money, (ha) to get additional financial assistance. This is the first time I've really been able to get out my feelings - sorry if I sound sorry for myself. Been living with this for three years and only getting worse.

I think that's what happened to me I was having a root canal and the song of Macy Gray came on this was about 11 years ago the dentist started dancing. I was laying there thinking what is going on. That started my nighmare. I now have anesthesia dolorosa also due to a bad surgery. That brunt my nerves beyond repair Lost my cornea that night also because they didn't patch my eye

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My wife was recently diagnosed with AD. The Neurologist says there is nothing else that can be tried but medications which don't seem to be working. I've read a lot about PNS and it seems to have helped a lot of people. Does anyone on this thread have any experience with this? Who are the best candidates? Side effects?

Thanks.