It has been a little over a month since my initial diagnosis. So far Gabapentin is working well for me but as I read other's posts I realize this could be temporary. I really like my doctor but would also like to get a second opinion. I am wondering if there are centers of specialty for TN? If so where are they? I don't mind traveling to see someone who may participate in TN research and be more of a expert in the area. Any help is greatly appreciated.
There is a tab in the upper right corner for doctors to locate on in your area. In my experience, Gabapentin was the first medication I was given and it worked for me. Over time, I have had to increase the dose but it is still a very low dose by comparison. I also thought I should seek out a different doctor and try a different medication and the one he put me on was a nightmare (for me) and I went back to what works for me. The only side effect has been recent weight gain...I will gladly take that over the side effects from the Topomax!
The doctors tab above … I believe some in Gainsville! Get the best. This is progressive and meds get less effective as time goes by… Be proactive!
Hi,
I live in Fl, and my local Neuro was fine for prescriptions, there were a few options that I was considering for a MVD consult. Gainesville, Duke University, and Dr Ken Casey in MI. I went with Dr Casey, and I am thrilled. He is an amazing person, Dr., and TN warrior.
TN is definitely a progressive problem, getting to someone who has an extensive history of facial pain will get you the best outcome.
Best of luck to you, I hope that everything works in your favor! Feel free to send a msg.
Tiffanie
Yes, you did say you would travel! How about a couple days in Michigan????
My hubby said we might as well go to the best!
Dr. Ken Casey is where I had my MVD - Flew from MO. to Trenton Michigan.
He is the longest practicing GURU of MVD on the planet..... and hasn't retired yet!
If you don't want to go that far - you can get ahold of him to see who you would see in Gainsville. He is on the board of Facial Pain Assoc.
I spent 2 nights in the hospital - then we drove home.
The small hospital can set you up in an apartment for the same price as a motel !!!
He will see all your records by email and from your local area....I didn't meet him till the day before surgery.
But I watched a video of him
And read THE book---his book --- Striking Back---- the bible of TN
I had TN bad for 1 year - jumped on the surgery table - came home and slept for 3 weeks --- now no pain for 2 years.
you can email me at ■■■■■■■■■■■■■■■■■■■■
Hello! I just had MVD done two weeks ago at Johns Hopkins by Dr. Lim and I would highly recommend the hospital and doctor. Prior to surgery I was on gabapentin and amitriptyline. My neurologist had to increase my prescriptions more than once because my body quickly became immune to them and the pain would over power them. They helped but I knew it would never work for the long haul. Best of luck, I hope you can get some answers somewhere!
Thanks for the suggestions. I am looking into going to see Dr. Casey. Especially now that MI will be warmer.