I am considering having an MVD at some point and wonder where you find good surgeons to perform this operation. Of course I would like a surgeon very experienced with this difficult operation. I live in Washington state so some where around here or on the west coast would be good but I do not even know how to start looking. Thanks for any advice. Mary
I would also ask on the website http://www.fpa-support.org/
I found mine by asking here and there - I knew there were many good surgeons in florida, east coast, mayo in MN
but I chose to fly from Missouri to Michigan to get one of the best
not the most fun airplane ticket I ever bought - but Dr. Ken Casey worked under the originator of MVD
he has done thousands???? LOL -- probably too many to count. There is a nice place they rent out to patients and their families near by for $90 per night - 2 bedroom is what we had
1 Night ICU - 1 night in hospital
I did nothing but research for many months, watched a couple of educational videos with this doctor in it, and finally made my decision.
he is also on the board of many TN things and educates extensively --- #2 reason - all set up by email - with him and me - no nurse, no middle man except to make date and time -- how many neurosurgeons do that?
Met him day before surgery and even though I wasn't any less scared - I was sure I made the right decision for me at the time.
Keep posting!
Thank you, Ke, that is very helpful. I am just at the beginning stage of this but I want to look for the future. I did find references to a team in Seattle but do not know their experience level yet. I would also like the best. Asking questions here and reading what others say is a great aid and I appreciate your response! Mary
My neurologist referred me to one who i checked out and i did some research on him and others in my area. I did not want to travel far because of pets and also my insurance company / STD was a PIA and was pushing me to act and giving me deadlines that did not make sense. I watched the video's and spent a few months before i decided to go MVD and picked a surgeon.
I am having mine done at Tampa General and my surgeon is affiliated with USF which is a teaching hospital and he does on avg 60 a year and has been doing them for years. Hope this helps
Thank you, that is helpful. Did you have another surgery first, like the Gamma Knife? Do you think it is better to avoid the other surgeries and just go to the MVD? I would certainly like to hear how the MVD works for you. When are you scheduled?
Hi I have had no other surgeries as they all cut or damage the nerve and why I went with the MVD. I am scheduled for surgery on 4/20 and will let u know it works for me.
Yes, I have read that MVD has over a 90% success rate which sounds very good. It also looks like you found a very good surgeon to do this. Thanks and I will look forward to hearing more. Mary
Best success rates are as follows:
TN1
Within first 1-3 years of diagnosis -- was first 7 years
No previous nerve damaging procedures
Have you read the book "Striking Back"? Kind of outdated - but 80% of it still applies
Also there is a link on here favorite doctors --- I think it should be divided into favorite doctors, fav. surgeons!
Also - I use topical lidocaine for breakthru pain --- and have seen a reiki practitioner -- thought it was a massuse -- but no pain for 3 weeks - and holistic!
Had my mvd last october --- you can message me here if you like and I will give you my email
Kimberly
Hi Kimberly I have not read Striking Back but will look for it. Also topical lidocaine sounds good too. I would love to do reiki as I have heard a lot of favorable things about it over the years. Thank you for all the infomation! Yes, I would like to hear more about your progress with the surgery. Mary
Kc Dancer Kc said:
Best success rates are as follows:
TN1
Within first 1-3 years of diagnosis -- was first 7 years
No previous nerve damaging procedures
Have you read the book "Striking Back"? Kind of outdated - but 80% of it still applies
Also there is a link on here favorite doctors --- I think it should be divided into favorite doctors, fav. surgeons!
Also - I use topical lidocaine for breakthru pain --- and have seen a reiki practitioner -- thought it was a massuse -- but no pain for 3 weeks - and holistic!
Had my mvd last october --- you can message me here if you like and I will give you my email
Kimberly
I had no TN pain for 11 weeks
now it comes and goes - but only one twentieth of what it was
have to wait the proverbial "year post op" - to let the nerve settle
If I only had to live with this amount - I could do it -- but do not wish to even put up with this much for the next 30 years of my life if I don't have to ----
Would consider 2nd MVD -- but only because I had to go back on a low dose of Trileptal which takes the edge of my smarts!
Hi Kimsberly, When you say you have some TN pain that comes and goes, could you describe it more? Does it come on its own or when you do something, like eating, talking, brushing teeth etc. Also, what does it feel like, electric shock, sharp pain, or just dull achey pain. I wonder about all this as I am trying to judge my pain and if I should continue with meds and increase them when the pain gets worse, as I am told it will, or think about surgery while I am still not too old to do it. Also, what insurance plan did you have for the MVD and did it take care of the expense? Thanks, it really helps to hear another's experience. Mary