I have only known I have TN for about 3 months and my neurosurgeon seems like he doesn't know much about TN, so I am being referred to a neurosurgeon next week, I am scared I am wondering what happens during a routine visit? I am also wondering if I would even quilify for any surgery, because I believe I have atypical TN. Thank you for any replies!
Did you mean your neurologist doesn’t know much about TN? So now you’re seeing a neurosurgeon?
In answer to your question, my consult with a NS involved describing my history with TN. ( I’ve had TN since 2002 so I had made bullet point notes to be able to recall everything, my brain was mush on all the meds. Lol) then I went on to describe where I am now and why I was considering MVD.
He explained the surgery to me and pulled up my MRIs, no compression was found but based on my history he was willing to do the surgery. I was able to ask questions as was my husband. Really important to bring someone with you to help remember everything, or take notes.
If you are considering having a procedure done. I would highly recommend consulting with more than one neurosurgeon. I’m of firm belief that you need an TN experienced neurosurgeon, someone who performs the procedure a lot.
In my case I chose a NS who has performed over 700 mvds, he does at least 1-2 a week. People fly from all over North America to see him. That speaks volumes.
The first NS I interviewed, was very nice, very well respected in my city, but in my opinion not as familiar with TN and MVD.
I had an MVD on my left Type 2 TN that also started to have type 1 as well. My TN was med resistant. I have bilateral TN, right side is type 1 controlled with meds.
Also try and read as much as you can here at LwTN as well as with google to get a good idea of all your options. Really important to make an informed decision rather than one made out of desperation for relief of pain.
Meds ( anticonvulsants or others) are usually the first line tried, as it can take some time to find a therapeutic dose that relieves you of pain , trial and error. Also remissions can occur as well, from weeks to months to years…
Most NS won’t consider performing a procedure if you haven’t tried at least 3 medications, but each is different.
I initially had TN for nine months after my pain was controlled for several weeks, my neuro started to wean me off my Tegretol. I ended up in an 8 year remission for my right side and ten year remission for my left.
Hope this helps, if you have any more questions feel free to message me.
Mimi
please don't have any nerve damaging procedures done without coming here first.....could mess up chances of a good MVD operation if you need one later.
your best chances of having a life of longer remissions - is to get educated on this fast
there is no cure
you must skim thru our "bible" here -- buy online "Striking Back" by Dr. Ken Casey
Keep asking/reading/learning repeat !
Good morning~
All the above advise is EXACTLY what I would say…I was diagnosed Aug 2011 and was beyond med resistant by Feb 2013. I contacted Dr Casey - HE replied to me and suggested a doc / colleague neurosurgeon that was half the distance from home(only 5 hours; Cincinnati; instead of the 11 hrs to Michigan …flying was not an option, very painful). I also consulted / interviewed another neuro to make sure…Dr Tew has performed over 5,000 MVD surgeries and is world renowned - a no brainer. ALL the staff are above superb as well as the hospital. I’m very thankful he accepted to take care of me!!
As was suggested - DO YOUR HOMEWORK and go in with your support person…we can’t be relied on to remember much with all the med side effects… Keep notes of how you feel, triggers, reliefs (if any), durations - all pertinent info.
My MRI also showed nothing - had both vein and artery compression…
Follow your instincts; if you are a praying person, I know He’ll listen!
((Smiles)).
Cris
Sorry it took so long for the reply, I have been sick with bronchitis, got that cleared up and had a really bad episode (it hurts all the time, but . I still call it an episode.) Mimi yes i did mean my neurologist, I am bad about not proof reading.
Thank you all for the advice, Cris thanks for referring me to someone, but the neurosurgeon did someone elses MVD from this group so I am really hoping she and I can discuss how it went, She recommended him so I guess it went good.
Thank y'all so much for being so nice and warming to me!!
No worries love Texas, I’m bad at proof reading too. These meds don’t help either… 
Hope you’re feeling better, bronchitis sucks!
Remember to bring a pad of paper and pen.
You go over a lot of stuff in a very quick time. It would be good to research later when you get home.
My 2c
Smash
Thank you all for the advice, this is do scary to me, sometimes I feel like I am just losing it!