I am meeting with my neurosurgeon who did my Chairi "pruning" 5 years ago to grill him about how many MVDs he's done and can I talk to a former patient of his. Got any specific questions I should ask other than the number he's done, how many recently, complications he's had, how many successful outcomes and how long they've been pain free...
Do you guys think that given those who've had recurring pain after MVD that there might be another reason for TN and those of you who've had no pain might simply have had a remission that you would have had anyway without surgery?
Its a good idea to ask how many a year the neurosurgeon has done. The surgeon that did my MVD, only does this anymore and does hundreds a year, so its really important to know that.
As for talking to a patient, that cannot be done due to the Privacy Act, this is a law that prohibits any patient info being given out without written approval, I work for an insurance company and cannot discuss any of my claims or I could lose my job and license, so the doctor will not be able to provide you with that info. What you can ask is what are his percentages, such as how many have lasted 5 years, 10 years, etc. Ask him how often he has to re-do an mvd, if that number is high, i would shy away.
I just had my mvd 3 weeks ago, i still have the type2 tooth pain, but it has gotten better than it was the week after surgery, i was told it can take months for the nerves to calm down after surgery and for the pain to totally go away, but I would say other than that my surgery was a success and I would do it again, I am off all the drugs now and am slowly putting my life back in order.
I would also get a second opinion if that is possible, just to see what someone else would suggest
I served as a reference for my Chiari surgery, but only after I signed a form and verbally said I would talk to this patient. I felt bad that I told her it was a breeze and she had a CSF leak and developed meningitis and was in the hospital for 3 months, I was out in 48 hours...bummer. Thanks for the questions, I've met my deductible and have great and expensive insurance (HIRSP here in Wisconsin, the state high risk pool) so I will go to Milwaukee or Marshfield (Mayo Clinic site) and get another opinion.
I spent three weeks in Wisconsin for work, it was the nicest place and the people were so friendly...I became I huge Packers fan, lol.
Check out the list on the doctors tab on this site, if you are near the Mayo etc, there may be someone that is recommended for this. Its worth traveleing for a good doctor, I live in Delaware and had my surgery in NY,
I also dont like to ever say it was a breeze, lol...it can burn you, I had a ton of complications in my surgery, but it was because I am allergic to everything on earth.
Hi Mollycule, I would also ask about what happens if he/she goes in and finds no compression? What will they do? For me it was comforting to know that my NS wouldn’t “mess” around with things and would just close me right back up.
I’m currently getting a second opinion just to compare, also waiting for other test results that could affect my desicions.
Good luck to you, (( hugs)) Mimi
hi there, i have often wondered that myself. i had a successful MVD for 1 1/2 years and is now starting to come back but its not the same so far. i had it in all of the divisions before MVD and so far its mostly in just a few places. i had it so bad before the surgery i had to write and not talk and i was on 1400 mg of tegretol. after MVD i got off meds and could manage without them. so now that the pain is returning, but not in all the ares i wondered about that myself. but then is it possible for all of the people who do have a pain free period after MVD for it to be coincidental that they would have a remission right after surgery? who knows. i dont think we will ever have all the answers to this strange dis-order. i guess that is why its so hard to treat. jacqueline