Neuro disagrees

I had a very successful MVD done almost 8 months ago. I no longer have constant pain, i don’t take pain medicine nor Tegretol anymore. I saw my neurologist last week for a follow up (last time i saw him was 4 months ago). I was telling him how great I feel and how happy I am that it all worked out. He proceeds to tell me that he really isn’t convinced that what I had was ATN and TN. (Mind you the neurosurgeon found 3 nerves being compressed by 2 arteries.) That he’s glad it worked but he isn’t sure it was the right thing to do. He’s going to keep my diagnosis as “chronic intractable migraines” and add “atypical facial pain” to it. What?! Is this complete denial on his part or just plain old stupidity? I am upset at this. I feel as though he’s not taking me seriously (or maybe he never has?). I hope this doesn’t affect my insurance somehow. I’m just flabbergasted. Even though I feel great now, I feel I should go find a more TN-literate neurologist in case issues flare up again in the future.


Wow...I'm not sure what to think,....sounds like he is taking issue that someone else fixed the problem...I am not sure where he is coming from, but my theory is, it worked..does he really need to call it TN or something else.

I think it depends on how you feel about this doctors care, if you are happy with it stay, if not, move on and go to someone with more TN experience.


My first response is find a new Neuro.
It is most important to have a supportive neurologist on this journey, you know that as well as I do. I don’t understand your current Neuro’s thinking at all…even though you’re pain free, the reality of TN is it could re-occur, hopefully not, but the possibility remains and if it does, you’ll need a supportive doctor. This Neuro despite conclusive evidence ( compression) and your current pain free state after mvd is now refuting your diagnosis? Makes no sense!
I’m mad now too. Frustrating…I don’t know how easy it is to visit potential new neuros, but if it were me, I would do it!
My neurosurgeon questioned my diagnosis the day before my mvd as he had never seen TN present like mine ( bilateral, with TN1 one side, TN2 on other side with TN1 presenting as things got worse. Also because of my lengthy remission years prior) he has performed over 700 MVDs and never seen anything like mine, BUT the next day hours after surgery and decompressing 3 separate blood vessels from my TN, he changed his tune.
Sorry for your frustration…(( hugs )) Mimi

I totally agree with you!! I had to go to several Neurologists before I saw a Neurosurgeon. My NS was shocked that so many Neuros had not picked up on the TN symptoms I had.

I am glad your surgery worked for you!! I had my MVD done in 2011.

Sounds like ego issues to me. Could you work it backwards and next time you speak to the Neurosurgeon or his office staff ask for a referral for a Neuro that he works with. You might have to mention in a non- threatening way what your regular Neuro said but it seems these guys have such fragile egos!

I'm glad I'm not crazy to be upset over this. Like you said Mimi, I just want to make sure I have a Dr on my team that understands TN (and actually believes I had it!) just in case things change. I don't want to have the pain come back and have a doctor that won't take the proper steps right away. I already did years of misdiagnosis and incorrect drug therapy.

Birdie: My NS said the same thing to me. He couldn't believe I had gone almost 10 years, over 7 neurologists and a bunch of headache clinics/centers and no one ever mentioned TN. It was always "chronic intractable migraine w/o aura".

TL: Genius! So simple but true. I'm having one of those "why-didn't-I-think-of-that?" moments. LOL I'm going to call my NS's office and ask him for a referral. Thanks!