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-   -   A Nightmare (https://www.neurotalk.org/trigeminal-neuralgia/182291-nightmare.html)

Doodle bug7 01-12-2013 09:25 AM

A Nightmare
 
Anesthesia Dolorosa (AD) is one of the most dreaded complications of the treatment of trigeminal neuralgia. It occurs when the trigeminal nerve is damaged by surgery or physical trauma, resulting in numbness in the face,
I have been living with AD for ten years now.I have felt the good, the BAD and the UGLY.The left side of my face is numb but I still feel Horrific pain
Somehow, the pain from A.D. is not as scary as T.N. for me cause I thought constantly about the huge bolt of lightening that could arrive every day, every minute, every second. I became a neurotic shell of a person dehydrated and would not speak. What a life.........then my husband said "were going to Mayo clinic" and we did. Rochester Minn. was eight hours away. I had two brain surgeries and the last one was to sever the nerve. We were there for three weeks.
Thank you for listening, Doodle bug7

jjlsongbird 01-13-2013 06:30 PM

Thanks for posting that. It may help some who need to decide whether to risk surgery for fear of AD. I hope someday they find a way to help the kind of pain you have.

Fowki 01-14-2013 01:45 AM

Quote:

Originally Posted by Doodle bug7 (Post 946826)
Anesthesia Dolorosa (AD) is one of the most dreaded complications of the treatment of trigeminal neuralgia. It occurs when the trigeminal nerve is damaged by surgery or physical trauma, resulting in numbness in the face,
I have been living with AD for ten years now.I have felt the good, the BAD and the UGLY.The left side of my face is numb but I still feel Horrific pain
Somehow, the pain from A.D. is not as scary as T.N. for me cause I thought constantly about the huge bolt of lightening that could arrive every day, every minute, every second. I became a neurotic shell of a person dehydrated and would not speak. What a life.........then my husband said "were going to Mayo clinic" and we did. Rochester Minn. was eight hours away. I had two brain surgeries and the last one was to sever the nerve. We were there for three weeks.
Thank you for listening, Doodle bug7

Doodlebug ( I love that screen name, BTW ),

I have had gamma knife x2, glycerol injection, balloon compression, blah, blah, blah....it kept coming back.....until this last gamma knife.

Now it is a permanent numbness and crawly feeling, and a constant achy, burning pain that sometimes escalates into a stinging (like a teeming layer of fire ants under my skin). My tongue is numb on the one side and feels swollen and itchy, and I have almost constant canker sores from where the back teeth bite or rub on the tongue in that spot and, because of the numbness, I don't feel it happening until an ulcer has developed. I have a ring of numbness around my eye that feels like I have a hair or bug or something crawling on it, and every so often the upper eyelid droops.

I am like you, though, in that I'd take this over the constant fear of being struck in the face by lightening without warning....

Take care!!:hug:


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