Hi Red, yes it was very complicated, they removed my skull base and the surrounding area and scraped the rest off my cardroid artery and optic nerves. Dislocated my jaw and replaced tendons, padded my head back up for treatment with fat from my stomach. It had busted through two cavities . . . a craniotomy zygomatic osteotomy was performed. Apparently one in a million. Had I not had the TN pain this may not have been found in time so I have to learn to live with it as it did save my life. I guess its going to be long term . . . I feel better managed now with 12mg 3x methadone and diludid for breakthrough pain, about one a day its get really bad and I cave and take it. I also started 60mg cymbalta and stopped the ciprilex, this seems to have made a great difference and I feel I can cope like this long term now, most days :) Good news is I was born with severe back problems and have lived with back pain up until last year, I now have no more pain cause I am unable to bend down the wrong way, head first, the pain from pressure and crainial fluid is too much. I bend at the knees only now . . . and no more back pain :) I wear knee braces to help.
Tracy you've had more reconstructive skull surgery than a lot of Iraq vets who come home with head wounds. Not surprising that a doc wouldn't want to try to thread the minefield of your previous surgical scars to do an MVD. Also, however, in cases like yours there should be no argument from medical professionals about your being an appropriate subject for opioid therapy. As I recall, Cymbalta is primarily useful against moderate or low level depression, so if you find yourself with serious mood issues, don't hesitate to talk with your PCP about other alternatives.
Thanks for all the replies…I really am getting ahead of myself. I dont even know if I have any compression of the trigeminal at the brain stem. I havent even had the MRI yet - although let me tel you I will pay handsomely down here in the states so I dont have to wait 1 year in Canada. I am having a hard time accepting that I have this facial pain - a contant 24 hour day “bacon frying” headache right smack in the bridge of my nose (envision the fat continuously spattering) and a gentle throb down the side of my right nose into the roof of my mouth, plugged ears (the feeling I am breathing through a snorkel), dizzy etc… Every second of every day, without relief. For the last 6 months I have convinced myself this is NOT atn/afp, and now after spending 3 months in the states trying to get pain relief (it certianly has helped with my neck) I am starting to ACCEPT that this isnt going away, today, tomorrow, and maybe never. It is like trying to accept someone just died - it takes a long time. I just started taking oxycarbazapine and will start cymbalta again. Is there any possibility that I may ever feel normal again? Or is this it…Do people ever find relief or are they living, truly, a hell every day of their lives? My god, how can I get out of bed every day. I dont have a quality of life that really is worth living. I can see why people choose the drastic alternative - what fun is left in my life?
I've met any number of patients who have had total remission of facial pain after an MVD or RF Rhizotomy procedure.
Your "plugged ears" catch my attention somewhat. That can be a symptom of geniculate neuralgia -- same process, slightly different nerve to the one involved along your nose.
For your info, however, there IS NO SUCH THING as "atypical facial pain" in the sense that this term has sometimes been used in medical literature. The term can be regarded as equivalent to one of two assignments: (a) facial pain of unknown etiology that crosses expected distribution boundaries of the trigeminal nerve system, or (b) "be darned if I can figure this out". Sometimes the choice between these two is a coin toss.
For further info, see the "Face Pain Info" tab on our page menus.
One day at a time is all I can say… and Red, I have the ear clogged feeling as well, its sometimes not as bad, but always there, hence the hearing tests I have had in the past.??
My neurosurgeon told me from the get go that I am NOT a candidate for MVD, and that I have ATN. I am confident in his capabilities as an excellent neuro. Hard to talk to sometimes, but none the less confident in him as a doctor! Peace, Min
You have read my mind! Getting out of bed is a battle zone as well accepting this as my life is the other. i have some hope of regaining relief, but so far the reconstructive surgery has not improved anything. i need tissue to release compression and thus far it hasnt been done. there are those days that i contemplate why go on. I am hoping that i will obtain some relief from the reconstructive portion and changing my pain medicine. since you are in the healing process, with perhaps more options with pain meds, isnt there hope of improvement. Whenever i hear someone that has this horrid pain, less quality of life, i identify. if there is any way that i can help, i will be glad to.
last night, i actually got out, but was in too much air conditioning. I tried to use the computer in the evening and I had a battle with lid closure. Next think i knew i woke up with a stiffened body and apparently closed lids. There was no dreaming.. I stumbled to bed, slathered on moisturizer in my 80 degree room. I woke up still painfully tight but better. I have several dr. visits coming up and I do hope they get the message. Cervical compression has a serious effect on our system.
My situation was one of those rare ones as yours and somehow it doesnt make me feel warm and cozy. I pray they find a means to rectify some of this suffering. Wishing you better days.
Min Czeschin said:
My neurosurgeon told me from the get go that I am NOT a candidate for MVD, and that I have ATN. I am confident in his capabilities as an excellent neuro. Hard to talk to sometimes, but none the less confident in him as a doctor! Peace, Min
You have read my mind! Getting out of bed is a battle zone as well accepting this as my life is the other. i have some hope of regaining relief, but so far the reconstructive surgery has not improved anything. i need tissue to release compression and thus far it hasnt been done. there are those days that i contemplate why go on. I am hoping that i will obtain some relief from the reconstructive portion and changing my pain medicine. since you are in the healing process, with perhaps more options with pain meds, isnt there hope of improvement. Whenever i hear someone that has this horrid pain, less quality of life, i identify. if there is any way that i can help, i will be glad to.
last night, i actually got out, but was in too much air conditioning. I tried to use the computer in the evening and I had a battle with lid closure. Next think i knew i woke up with a stiffened body and apparently closed lids. There was no dreaming.. I stumbled to bed, slathered on moisturizer in my 80 degree room. I woke up still painfully tight but better. I have several dr. visits coming up and I do hope they get the message. Cervical compression has a serious effect on our system.
My situation was one of those rare ones as yours and somehow it doesnt make me feel warm and cozy. I pray they find a means to rectify some of this suffering. Wishing you better days.
Min Czeschin said:
My neurosurgeon told me from the get go that I am NOT a candidate for MVD, and that I have ATN. I am confident in his capabilities as an excellent neuro. Hard to talk to sometimes, but none the less confident in him as a doctor! Peace, Min
I have ATN and have had MRI which showed compression of the nerve.. My neuro, one of the best in Australia, said he did not recommend the surgery as it works in pure Type 2 ATN cases .. no type 1 symptoms.. only around 5% of the time... and he said he was being generous. He would do the surgery only when im at my wits end he said.
If you have type 1 symptoms as well then MVD is a very good choice for surgery and much more likely to give you a positive outcome.
Kara, one of our members, just had an MVD and she is pain free. She had type 1 and 2 symptoms. You should talk to her if you have any questions ... http://www.livingwithtn.org/profile/KaraKolmar ... she is so happy to be pain free !!! and we are all so happy for her
There is an article in the TN Association Knowledge Base reporting a series of MVD outcomes for a mixed population of TN and ATN patients (just over a hundred in all, a third of them ATN). The surgical team made every effort to avoid extensive manipulation of the nerve while isolating it from blood vessels. The reported outcomes for ATN patients were positive in ab out 70% of the cases (if I'm recalling correctly). There is a link to that article in our "Face Pain Info" Tab on the menu bar above.
I am contemplating surgery as well. Dr. Babu at NYU and Dr. Casey in Detroit seem to be the guys doing the most with ATN and MVD these days in my research. Hope we can both find some relief!
i have to order my events, but what is babu up to. I was a New Yorker, so I know of him. someone complained of his arrogrance.Brown said I was not an MVD candidate but there is reconstuctive surgery in the future. i am not a brown fan.
My neurosurgeon told me from the get go that I am NOT a candidate for MVD, and that I have ATN. I am confident in his capabilities as an excellent neuro. Hard to talk to sometimes, but none the less confident in him as a doctor! Peace, Min
A true MVD locates a vessel impacting the trigeminal ganglion goes in a puts a teflon wrapper or other protective coating to protect the nerve from being scraped. I think if you have this issue you have a high chance of being helped by an MVD. However, if like for my wife, you doctor cannot find a vessel in an MRI but opts to do the surgery anyway, and then during surgery cannot find a vessel so they just score the ganglion then your odds of success are much lower. In this latter case, I would say that is NOT an MVD even though it may show up as an MVD on your records for insurance reasons.