HAS ANYONE HAD THIS PLEASE??!! AFTER TRATMENT THAT BURNS TN NERVE ?? tHANKS
Yes under groups…there is one there!
I cannot find REPLY ??? THANKS GIGI
Yes I am stuffing from AD I have all the classic symptoms. Presently I am managing on Tegrital and Baclafin. I have tough days and better days. My MVD was in 2013. Three Docs have stated its TN and will not use AD as a working diagnosis
THANKS ! IS YOUR FACE NUMB ??
yes, and twitching ...
Im sorry, was sure there was a group…
Use search here
And type it in…learn what you can!
Also search. AD. also
There is a group on here, but I can't seem to get any answer from anyone. I've had AD for over 4 yrs. Terrible. Worse then the TN before MVD. At least on meds I could manage. This never stops except when asleep. I do know how you feel. We suffer in silence. I cry every night about it.
Edster said:
yes, and twitching ...
I CAN’T GET ANY ANSWERS EITHER! I RECENTLY WANT TO KNOW IF ANYONE HAD THE NERVE BURNT AND HAVE BEEN AT A SOLUTION FOR MONTHS.
Look for a Dr to help. Might as well stand on the streetcorner, waving a sign!!! At least that way I may get a couple coins thrown my way.
I had a balloon compression done, I wasn't aware that it permanently causes damage, or I wouldn't of consented (at my age, I should of had an MVD, I am 37). Almost 6 months later I have similar, parts of my face and mouth are still numb and I get "creepy crawly" feelings down the 2nd branch of the nerve. Also sometimes it has a burning feeling. I had none of these before the compression.
I was left with AD after a balloon compression procedure. The areas affected are my left ear and left cheek. Nothing helps.
I as well suffer with AD. Have found no answers. I'm so tired of all this. I do okay for a while then have a breakdown in private last night. Hubby in the other room watching basketball.(which is more important then listening to me with my pain). After all these years it is just taking a tole and wearing me out. TN started in 1999. I think I waited way to long to have the MVD> Gamma knife before that in 2008. MVD in 2010.
I feel if I had done the MVD sooner I wouldn't have the AD. The nerve is way to damaged. But as you all know we will try anything before invasive surgery. So we pay the price.
I'm just worn out with all of this. When does it end? I'm 67 and healthy except for this monster that lies within me. I have a good chance of living another 20 yr. But with this? I know it won't kill me, but please just someone give us some relief.
That is the problem, there is never any relief. If just for a while. What would it feel like to be normal again. I do wonder. I go thru my daily functions, then wonder how I did it. Do you do that? I'm just plain tired of putting up a front. Like nothing is wrong when everything is wrong. Do you feel that way?
OMG !!!! DITTO to all you said !!!! I am 66 and My spouse just watches the "game" whichever one is on ! DO you a tumor also ? I feel for you, at age age we should be "living " !! I have 5 grown children and 18 grands to live for- but too sick to ! I would LOVE to talk to you AT YOUR CONVENIENCE ?! I have breakdowns weekly, while my husband either watches TV or plays on his computer !!! Hang in there- THANKS A MILLION for your reply !
It seems doctors are very slack at telling us that destructive procedures can cause all this :( I cannot sue in our country. My surgeon consented me for an MVD, changed his mind, told me a balloon compression was the way to go, that it would numb the nerve and cause the pain to go away. By the time I got to the anaesthetics room I said well don't I sign a new consent form and they went no we just crossed MVD out and wrote balloon compression!!!! (I am a nurse, I know this is not legal!). If he had told me it will cause permanent side effects I would not have said yes. I am still deciding whether to make a formal complaint over it. I don't know if they were this slack because they thought I knew it all being a nurse or if they do this to the general public - no excuse for either really.
If you get the creepy crawly sensations like I do, try a prescription of nortriptyline which is used for AD. I am on 30mg at night at the moment and it calms it down enough so I can go to sleep.
That is so WRONG ! So sorry !!! I do not trust many Doctors any more !
poisonivy said:
It seems doctors are very slack at telling us that destructive procedures can cause all this :( I cannot sue in our country. My surgeon consented me for an MVD, changed his mind, told me a balloon compression was the way to go, that it would numb the nerve and cause the pain to go away. By the time I got to the anaesthetics room I said well don't I sign a new consent form and they went no we just crossed MVD out and wrote balloon compression!!!! (I am a nurse, I know this is not legal!). If he had told me it will cause permanent side effects I would not have said yes. I am still deciding whether to make a formal complaint over it. I don't know if they were this slack because they thought I knew it all being a nurse or if they do this to the general public - no excuse for either really.
THANKS I will try that ! I take Gabapentin and Hydrocodone . Do take anything else ?
poisonivy said:
If you get the creepy crawly sensations like I do, try a prescription of nortriptyline which is used for AD. I am on 30mg at night at the moment and it calms it down enough so I can go to sleep.
I Had nerve burnt- WRONG part by Dr. ! Now I am totally numb on rt side of my face, tongue ,gums etc. ! AND the pain is worse ! Now I have AD.
Carey Larsen said:
I CAN'T GET ANY ANSWERS EITHER! I RECENTLY WANT TO KNOW IF ANYONE HAD THE NERVE BURNT AND HAVE BEEN AT A SOLUTION FOR MONTHS.