Hi, Laurin,

Was the UCI doctor that was recommended Mark Linskey? He's probably the best in that area and that alone should be enough to let you go outside your insurance - it's in their best interest to have the best and not have someone less experienced do less than the best job and ... well, I won't spell out the repercussions here and now, but the insurance company sure doesn't want that. They should pay for second opinions and you may be able to get Dr. Linskey's office to help you work it out with insurance. There's a member of this forum who went to him from Colorado and had a very successful MVD. I'll drop her a line and maybe she'll come on and give you some tips. Assuming it's Linskey you're talking about. You don't want just any neurosurgeon doing an MVD - the nerve root is deep inside the brain, it takes a lot of experience to get a good success rate, and it's a rare disorder so there just aren't that many out there with that kind of experience.

He's on the TNA-FPA Medical Advisory Board -

http://www.fpa-support.org/providers..._page.php?i=34

and that gives a link to his UCI info -

http://faculty.uci.edu/profile.cfm?f...%20E%20Linskey

which has contact numbers and email.

There's also Dr. John Alksne at UC San Diego -

http://www.fpa-support.org/providers..._page.php?i=39

http://neurosurgery.ucsd.edu/john-alksne-md/

who is also on the TNA-FPA Medical Advisory Board. I don't think I know anyone personally who has had an MVD with him, but I've heard good things about him at the TNA-FPA functions and met him.

Have you been in touch with TNA - The Facial Pain Association?

http://www.fpa-support.org/

They may be able to help you with this, too. Do you have the book Striking Back? It's the manual for dealing with this and will help you in your search. Research, research, research!

Best to you and your son. Let me know if there's any way I can help.

Jean