I would like to try and go to the Mayo Clinic in Minnesota. My neurologist does not think it will help.
Do any of you have experiences going over to one of the Mayo clinics?
I went to Mayo in AZ about 6 years ago, but was still undiagnosed at the time after having gone to over 10 different docs and neurologists. After an $8000 MRI at Mayo, that my insurance didn’t cover, I finally had a diagnosis of ATN! Well worth the cost! At the time, their protocol was Tegretol and said they very rarely do MVD’s. So, going there was helpful for me personally to get diagnosed, but if you’re willing to travel, I’d go to someone who has more of a focus on TN. I fly from CO to Pittsburgh to see Dr. Sekula. He trained with Jannetta.
I had Micro Vascular Decompression on the left side at the Mayo Clinic in Phoenix AZ in 2007. I was not totally satisfied with their work and had to have Cranialplasty to repair a very sloppy closure. But the MVD did help. Some TN pain has come back, but not as bad as before surgery. It is more easly controlled with less drugs. I also had Gamma Knife surgery on the right side, at Barrow Neurological Center in Phoenix in 2009, Again some of the pain has returned, but not as bad. This is a progressive condition. The pain is going to get worse-not better as the years go on. I have been fighting Bilateral TN for well over 15 yrs. I am 67. If I had a choice, I would have the surgeries again. They did help and almost gave me a fresh start in controlling this monster called TN. I don't know why your DR. does not want you to have another opinion, that seems strange. Best of luck to you, I hope you get an appointment with Mayo or one of the many more Neurological Centers around the country as good or much better as Mayo, because they concentrate on the brain only. Remember to do your own study and be your own advocate. Be well informed when you talk to your Drs. It is your health --not theirs.
I took my son there. He has both TN1 & ATN. They were worthless for us. If you are traveling, I would go see one of the neurosurgeons who are totally focused on TN like Dr. Casey, Dr. Linskey, or any of the other neurosurgeons who are totally focused on TN. My son just had a consult with Dr. Linskey & according to his fMRI does have large veins compressing his nerve on rt side which Mayo Clinic totally missed.