I recently had a consultation at Mayo Clinic in Rochester, MN. I was fortunate to meet with a neurologist that has been working with TN for 20 yrs and has seen everything. It is truly scary what treatment some people are receiving out there. He counseled me on how to take my oxcarbazepine different (150 mg 4 times per day rather than 300 mg twice per day), so that it is more therapeutic. Also, he states this is a progressive disease and that at some point the med will no longer work therefore, he sent me for a consult with a neurosurgeon. I will see him in a month and a half to discuss possible MVD and other options. Wondering if anyone else has gone to Mayo?
I saw an ENT at Mayo for ear pain with dizziness 4 years ago. The face pain was just starting. Was told it was stress and anxiety as my husband had passed recently. Feel like I wasted several years suffering needlessly. Once you are given that kind of diagnoses, it is very hard to shake off your records. I am looking for a neurosurgeon but would be reluctant going back. Thinking about University of Colorado in Denver. I have to travel either way
I have had extreme stress and anxiety for the past several years and am afraid doctors have put it in my record. When asked if I have anxiety I always tell the dr. "no". It is frustrating to have pain dismissed as stress. Do you know if I ask for my complete file if it will have all of the dr. notes included or do we get an abridged version? Fortunately, my neuro is treating me for my TN (although not proactively) but I have gone thru 4 P/C's in as many years.
missy said:
I saw an ENT at Mayo for ear pain with dizziness 4 years ago. The face pain was just starting. Was told it was stress and anxiety as my husband had passed recently. Feel like I wasted several years suffering needlessly. Once you are given that kind of diagnoses, it is very hard to shake off your records. I am looking for a neurosurgeon but would be reluctant going back. Thinking about University of Colorado in Denver. I have to travel either way
Who are you seeing at Mayo. That will be my next choice if Sioux Falls can't treat me. I would ask for copies of your complete file. Then you can edit out as you see fit. I tell Drs that the only stress I am under right now is pain. I am upfront when asked including that I see a therapist monthly or PRN. That seems to satisfy them.
Dr Cutrer is the neurologist and Dr Link is the neurosurgeon.
I have.
I saw Dr. Ivan Garza in Neurology. He is awesome.
I LOVE Dr. Garza. He is very knowledgeable about meds. He still works with me on my migraines.
Dr. Bruce Pollack is the only doctor I know of who specializes in MVD at the Mayo. He is very smart, and a personable enough man. He works with a nurse, Kathy, who basically helps with all areas of his practice.
I had an MVD with Dr. Pollack. It was a total failure. I may have actually been made worse. Then he suggested Gamma Knife. Again, no success at all.
In the meantime, I was diagnosed with TN on the other side of my face. Dr. Pollack said that we could only treat one side at a time.
His solution for me was to cut the nerve! OMG! Drastic!
I actually felt as if he had NO time for me because I didn't fit into his list of accomplishments.
I know that Dr. P is very experienced with MVD's. He is a nice enough guy. If you live in Minnesota, or close to Mayo, it makes sense to talk with him. He WILL suggest MVD. He does the injections, but I know that he is a big believer in MVD.
Just know this -- if you are one of the people who don't have success with an MVD, there are lots of other options, and lots of other doctors out there for you!
Good luck!
Not sure people are actually reading what I wrote on here as their responses don’t correlate. Positive the Dr I saw was, as I stated, Dr Cutrer. Who stated to never let anyone cut the nerve! The neurosurgeon is not Dr Pollack! I think I know as I just got home from there!
Missy - if you decide to come to Denver - Dr Breeze at Anchutz (University of Colorado Denver) is a wonderful surgeon. He did my MVD in March and although it was only partially successful I would strongly reccomend him. He is caring, listens, and is in the top of his field. For those who believe that Dr Casey is the best - Dr Breeze worked with Dr Ken Casey years ago when Dr Casey was at Fitsimons Hospital in Aurora. Dr Breeze was as depressed as I was when the MVD didn't work. He has worked with me finding meds that may work and has worked closely with my neurologist in follow up treatment.