I was DX with TN about 1 year ago. I have been doing OK on meds but my neurologist is pushing me for surgery. He said that eventually the medicine will not work. I am VERY nervous about this. I haven't read very many positive outcomes to the surgery but thought I would ask you guys since you are all experiencing this first had too. Its not really the surgery part I am worried about. I am an Operating Room nusre and although I haven't seen this type of surgery, I have seen lots of crainiotomies. I know what to expect preop and during surgery, its the after that I am concerned about. I dont want to go through all of this a still have pain. Another concerning factor is choice of surgeon. The surgeon he wants to send me to is very young, both age and lenght of practice. I knew this guy when he was learning to tie suture! If any of you have had the surgery, what is your opinion of your surgeon? My neurologist says the surgeon is good, having just finished his residency but I am concerened about the low numbers he has done. Having worked with him as a resident, I think he is probably good. I'm jsut so confused (nurses make the worst patients!) and I am tired of hurting. This decision will take me awhile, it took me about 3 years to seek treatment in the first place. I don't mean to ramble, I just need so advise. Thanks for listening!
Ohhhhhh Nooooo -- you want somebody who has done hundreds or thousands of them!!!!!!
I flew from Missouri to Michigan ---- we drove home
Dr. Casey tours the planet showing other docs this, is at the head of the TN board, I would not have used anybody else. I am at 1% pain in the two years.
Most people who come here do NOT get this kind of result -- they leave here and go back to life --- there is a variable of from
didn't work at all, made them worse, still on meds and some pain.... here is these most stories.
It will come back to me within 10 years and need another MVD/ Casey will have retired by then..... if so... I will go to Baltimore / John Hopkins Dr. Lim.
I did many many months of looking at surgeons --- my neuro told me to leave the state and find somebody -- and he was right!
Dr. Casey will look at your case mail and email to you and give you a date ---
If your doc. has a problem with you wanting an EXPERIENCED TN surgeon -- than you need to get out of there!
I wouldn't try and be nice about it, or worry if you hurt his feelings.
Don't worry that his buddy won't get to open your cranium!
I recently had a tiny stroke - I know this is choppy - some better days than others.
I hope this helps -- probably good new graduate????? --- NOT EVEN!
BEST is BEST!
It’s really hard to be a health care provider & patient at same time… me also I know how the surgery is invasive… It’s hard to decide !
The first 3-5years of MVD IS the best time in new research…
Find all the facts you can get…l.l
This is a great site!
The more you read, and learn about the facts,
the better could be your outcome.
I agree with KC. I traveled from Georgia to NY for my MVD. My surgeon is Dr. Jeffrey Brown, another TN expert. I had MVD on my right side in January of this year,mand while it helped with the shocks, the burning boring pain remained. ( I have bilateral ATN). In July , I went back to Dr. brown and he concluded I did not have any new compressions,but since I have had undiagnosed ATN pain for close to ten years, the nerve was too damaged to have benefitted from the surgery. Research seems to show that any time the nerve has been exposed to trauma for longer than 8 years, the success rate of MVD relieving pain is less. So it seems that has been the case with me.
I know the thought of cranial surgery can be intimidating, but this is one that seems to be best done sooner than later, and always by an EXPERT.
Best of luck to you!
To answer your first question unfortunately this is a progressive disease and very typically medications become less and less effective over time. The odds of your MVD surgery being successful and giving you relief are very high. The amount of relief and length of relief can vary. I had my surgery 30 years ago and have been absolutely pain free for 30 yrs. My Dr was a Dr Kenning out of Temple who learned the procedure in Pittsburgh under Dr Janetta, who invented the surgery. I inially went to a surgeon at University of Pa who laid out all the odds but did not make me feel very confident. Dr Kenning, without an MRI, diagnosed exactly what my problem was based on my description of my pain. He said to me "dont worry I will take good care of you" and at that moment I knew I had the right guy. Absolutely 100% find a surgeon with extensive experience at doing MVD surgery. The difference between a positive outcome and a negative one very likely is the quality and experience of the surgeon. Wish you the best of luck
I agree with all the others! I wouldn’t let anyone that hasn’t done thousands of these touch me, tooo risky. I also work in healthcare, too. KC told me about Dr Casey in Michigan, that’s who I had do my MVD, he also trained with Dr Janetta and he wrote the book “Striking Back.” Do your research and if you decide to do it, you will know who is right for you. Good luck with your decision!!
An experience surgeon is a no brainer. ( : Good Luck!
get the surgery. im very happy i did (mvd). i did have complications and it took 2 more trips to the icu and and getting cut open again.so i lost the month or august with extra recovery time...but my face does not hurt!!! im back at work, and while weak getting stronger everyday!
Yes, I am soooo glad I had the MDV surgery. How nice to be pain free! However, please get an experience surgeon and look carefully into his qualifications.
I am a week out from my MVD surgery today. I am physically better then I thought I would be at this point. Find a Dr. you are comfortable with and has experience.. My TN started 2 years ago. at this stage of recovery I am thinking I should have done the surgery sooner. I had two Dr's J. Lee and A.Marchado at the Cleveland Clinic. Lee is teaching Marchado the procedure. Both are listed as resources under the Doctor's tab. I would recommend them and the CC to anyone. My TN pain is reduced in frequency by 50%, and i am still on the drug levels I was taking prior, put i do notice a change in the pattern. Good Luck in your decision
John