I had a MRI the end of February and my neurologist’s nurse called to tell me they found an artery very close to the nerve and wanted to refer me to Mayo clinic in Rochester. After 3 weeks I received a letter saying they had to decline me because they were too busy since they were currently short staffed.
Well I was very disappointed but after some more research on the internet, I would like to talk to the University of Minnesota. Their neurology department sounds promising because the head doctor specializes in TN and sits on the TNA board. I plan to call on Monday so I can find out how difficult it would be to get me in there and to find out about insurance. I will also call my doctor to refer me there – I don’t think that will be a problem.
Has anyone had any experience with University of Minnesota? I have TN2 and would love to try MVD or something besides medication to fix it or at least try to fix it. I’m not sure if they would try it since my symptoms are a bit unique. I think I have both TN2 and GPN.
I don't know why it won't let me post this correctly - 3rd time a charm!
Knowing what I know now -- did a year long research on MVDs and providers
I would not go thru mayo or university - too much waiting and red tape
I picked Dr. Ken Casey --- also on TNA board - wrote a TN book - learned under inventor of MVD - done thousands of them - lectured and taught mvd for decades--has taken on cases that nobody else would.
Email him / his office - he will email you back personally --- tell him your story - to the point - what pain, where pain, when pain
He emailed me some pain scale tests (I live in MO - he is in Trenton Michigan)
Consulted with my neurologist here that the med side effects took my life away
within 8 weeks got my MVD-- I had to schedule flight there and make arrangements for us to drive back, etc.
1 night in small hospital ICU --1 night in regular room -- then we stayed in a rental apt. that is thru the hospital 1 night before MVD and 1 nite after discharge. 2 bedroom, kitchen, etc.... $90 per nite and about 20 min. from hospital. Everybody at that medical center just loves him! Great sense of humor - and great skill.
Thanks KC Dancer. I don't know if they will do MVD since I have MVD. Also my meds are sort of working but some of the side effects I experience are poor memory, very tired and i have issues spelling. It makes it difficult to function at work sometimes too. I thnk I might have GPN too so I guess I'm not positive I would be a good candidate but I'd rather have MVD than one of the destructive surgeries if possible. Do you think Dr. Casey would respond if my MRI shows the artery close (not sure if they could actually see a compression) and I have TN2?
You are lucky of they can see an artery even close! Most of us never have anything show on MRI or mrv. They usually find the culprit once they get in there. It sounds like live up north somewhere. I urge you to google Dr. Kim at Mischer Neuroscience Institute in the Medical Center in Houston. He did not do my surgery, but he is the he’s of the institute and only specializes in face pain. I had both of my mvd surgeries done by another Dr in the group, Dr. Zubay, because he was in their Woodlands office which is where I live. If I continue to have any problems Dr. Kim is my next stop as I feel he is really on the cutting edge of what is being do e to treat face pain. Anyway, he has some free webinars up that are interesting and informative if nothing else. I wish you the best of luck!
Thanks Heather. I'll keep that in mind. I've reviewed the doctors on the doctor page here which is quite helpful but it's nice to hear personal stories and some of the doctors listed there are no longer with those facilities. Thanks again!
KC Dancer I have emailed Dr Casey so I'll let you know if /when I hear from him.
Dr. Casey doesn't do MRIs - you can only sometimes find a compression on MRI -- But if you have an MRI to show him I'm sure he'll want to see it. Please post here or message me when you hear from him -- and if it is a few days -- he could be traveling/lecturing--- sometimes answers from his mobile device! He has done more than one MVD on some people I know.
Kimberly he already answered me - WOW that was fast. He's asking me for letters from my doctors and I need to fill out some pain sheets and some that explain my history. He does want to see the MRI so the clinic is already sending all of this to him. I haven't contacted my GP yet but will need to tomorrow so he can also send something. He saw me before I was on any meds and my neurologist did not. I don't do alot of complaining to my neurologist....hopefully that won't hurt me now. I mention the memory issues, the travel issues I have because of the vibrations but that's about it. I always tell her I'm afraid to switch meds since it took me 6 months to get used to this one. I honestly have to say these meds are working fairly well for my pain for at least 2 - 3 weeks, then they don't for a week or two then they work again for 2-3. Right now happens to be a good time for me. Then it's always hard to fill out the pain sheets. I still have some but it's not near as bad as the bad times are.
I'll let you know when I hear more. I'm not looking forward to driving there but flights are SOOO expensive. It is 1200 miles for us - we live near Bismarck, ND. There isn't a single neurologist in the state that has experience with TN that I can find. At least I should get some answers from Dr. Casey about what is going on with me, whether he does MVD or not!
I wonder if the lack of experienced neurologists in your state is due to a lack of cases of TN to treat or what the reasoning is. I know its a less densely populated state, but it seems like SOMEONE should have some experience with TN. Sounds like a huge opening for any neurologists who have experience in face pain disorders who want to move to ND.
Kimberly he already answered me - WOW that was fast. He's asking me for letters from my doctors and I need to fill out some pain sheets and some that explain my history. He does want to see the MRI so the clinic is already sending all of this to him. I haven't contacted my GP yet but will need to tomorrow so he can also send something. He saw me before I was on any meds and my neurologist did not. I don't do alot of complaining to my neurologist....hopefully that won't hurt me now. I mention the memory issues, the travel issues I have because of the vibrations but that's about it. I always tell her I'm afraid to switch meds since it took me 6 months to get used to this one. I honestly have to say these meds are working fairly well for my pain for at least 2 - 3 weeks, then they don't for a week or two then they work again for 2-3. Right now happens to be a good time for me. Then it's always hard to fill out the pain sheets. I still have some but it's not near as bad as the bad times are.
I'll let you know when I hear more. I'm not looking forward to driving there but flights are SOOO expensive. It is 1200 miles for us - we live near Bismarck, ND. There isn't a single neurologist in the state that has experience with TN that I can find. At least I should get some answers from Dr. Casey about what is going on with me, whether he does MVD or not!
Thanks!
I'm glad you are going to get some answers -- if you have to - copy pain scale a couple times and put one named "weekly" or "daily" or "when I drive" "when trying to sleep"
whatever the differences are in your symptoms -- those pain scales are kinda limiting
Then bullet point your memory issues and how they affect your work, family life, relationships, driving - whatever they affect in life--- I feel so fortunate to have my IQ back
My MVD was done based on the side effects of the meds --- I was in remission and not even hurting when I did it -- but I know TN is forever- and it gets worse over time - just goes out of remission --- some have had more than one MVD
Would love to hear how your story unfolds! There also were no neurosurgeons here that my neurologist would let work on him!
I'm glad you are going to get some answers -- if you have to - copy pain scale a couple times and put one named "weekly" or "daily" or "when I drive" "when trying to sleep"
whatever the differences are in your symptoms -- those pain scales are kinda limiting
Then bullet point your memory issues and how they affect your work, family life, relationships, driving - whatever they affect in life--- I feel so fortunate to have my IQ back
My MVD was done based on the side effects of the meds --- I was in remission and not even hurting when I did it -- but I know TN is forever- and it gets worse over time - just goes out of remission --- some have had more than one MVD
Would love to hear how your story unfolds! There also were no neurosurgeons here that my neurologist would let work on him!