While I’ve been diagnosed by my usual doctor, “the knife” is killing me, and frankly I’d like a more thorough review of my current state and my options. I’ve requested an appointment at the Mayo Clinic in Rochester MN. I’m lucky in that I have geographic proximity and medical coverage that makes this a possibility. Anyone have any experiece with this facility and their TN capabilities?
I just had MVD at Mayo in Rochester on the 22nd. I live within 5 hrs from there. I first went and had a consultation with a neurologist and then a neurosurgeon and then made my appointment for about 1 1/2 weeks later. I had already made the decision, after MUCH research and MUCH pain that this is the route that I wanted to take if the doctors thought it was best for me. I am 33 years old, mother of 3 young boys with much more important things to do than to waste my time on this horrible pain. I was willing to give anything a try. I am now a week out of surgery and no facial pain. Psychologically, I don’t know if we can ever get over this. My heart aches for those that have not had success. I also know that a week is nothing, and I am not out of the woods but hope is there. Recovery from this procedure is much worse than I expected but baby steps is all I can take. Mayo is a wonderful facility with a wealth of knowledgeable doctors and caring nurses. I felt very comfortable there and think it’s worth a consultation at least. Good Luck!!!
K,
Thanks for the info. I did get a consult, but not until October. I’m looking forward to meeting with them, and appreciate your insight. Thank you for posting, and here’s wishing you all the best on your recovery.
Hi K,
I was wondering if your MRI was normal? I have had two normal MRIs, Univ of WI neurosuregon recommends MVD, but I am planning on second opinion at Mayo in two weeks. I have a 18 month old and want to have more children. I must get this taken care of and was wondering if Mayo did your surgery with finds of vessel touching nerve on MRI or not.
Thank you.
K said:
I just had MVD at Mayo in Rochester on the 22nd. I live within 5 hrs from there. I first went and had a consultation with a neurologist and then a neurosurgeon and then made my appointment for about 1 1/2 weeks later. I had already made the decision, after MUCH research and MUCH pain that this is the route that I wanted to take if the doctors thought it was best for me. I am 33 years old, mother of 3 young boys with much more important things to do than to waste my time on this horrible pain. I was willing to give anything a try. I am now a week out of surgery and no facial pain. Psychologically, I don't know if we can ever get over this. My heart aches for those that have not had success. I also know that a week is nothing, and I am not out of the woods but hope is there. Recovery from this procedure is much worse than I expected but baby steps is all I can take. Mayo is a wonderful facility with a wealth of knowledgeable doctors and caring nurses. I felt very comfortable there and think it's worth a consultation at least. Good Luck!!!
msuclemay -- I'm so sorry you are dealing with this. Believe me, my prayers go out to you for a full recovery. I had multiple MRIs both in Omaha and in Mayo Clinic. All came back normal - nobody was ever able to see any sort of compression. TN is definitely a sneaky devil. It's very apparent, this procedure is an art and I needed to go someplace where the surgeons had plenty of experience in dealing with it. My neurosurgeon at Mayo couldn't give me full assurance that he would find a compression since the MRI came back fine. However, I knew that the MVD was the only option for me and I was willing to take that leap of faith for the sake of my family and my sanity. I am happy to report 3 years later, I am still pain free. I have some minor side affects from the surgery -- balance issues most likely a result of the possible disturbance to my vestibular nerve during surgery but definitely not a big deal, it's still slowly but surely still coming back. Best of luck to you and let me know if I can answer any more questions.