MVD surgeon in SF bay area?

[Jeanette_A]

I'm so glad that I found this website!!!

I am 46 years old. I have had TN since 1998. I had radio frequency surgery in 1999 and was pain free for 6 years. The TN came back this time last year so I had the surgery again. It didn't work but I was able to control it very well with only 400 mg of carbamazepine per day (generic for Tegretol). In late August, I went down to 300 mg for a week then the pain broke through. Long story short, I'm now taking 1600 mg per day. The pain is still breaking through.

I am looking for a neurosurgeon in the San Francisco Bay area that has lots of experience with successful MVD's. I spoke to Dr. Hendersen at Stanford who specializes in TN. He has done 30 of these. That to me sounds like only a few. I didn't think to ask how many of them were successful.

Thanks for all of your help!

Jeanette

[NattyNat11]

Dr. Barbaro at UCSF. I am not an advocate because I think he is a snoot and he initially misdiagnosed me BUT he did save me when I had my staph infection after the initial MVD surgery. The staff at UCSF I have to say is top notch. He is EXTREMELY hard to get an appointment with. If you have any pull, use it.

I personally recommend Dr. Alksne actually at UCSD he did my inital surgery and I thought he, his staff and everyone down there was phenomenal. I know it sounds like a pain in the *** to do the surgery down South but I cannot tell you, he is the kind of Doc you wish all Doctors were like, old school, kind, patient, a thorough listener and brilliant.

http://www.neurosurgery.ucsd.edu/alksne.htm

Trust me on this one, I cannot say enough about him, he is superb. If you have any ?'s feel free to email me.

[KIMMERS]

Dr. Henderson is a great surgeon. I've heard nothing but great things about him. I had a friend that lived in Wisconsin that had a Motor Cortex Stimulator implanted by him and she flies to Stanford every year to have him do her programming. If you research him, I think you'll find him to be a very bright man.

Kim

[JeanC]

Hi, Jeanette,

Just a few thoughts -

Barbaro and Alksne are both members of the TNA's Medical Advisory Board (MAB) which has some info on them listed in the resource list of neurosurgeons (be sure to read the disclaimer at the beginning of the resource list - TNA Medical Resources (http://www.tna-support.org/newlook/medinfoonline_files/medical_resources.htm) ) -

Barbaro (http://www.tna-support.org/newlook/medinfoonline_files/Neurosurgeons/Barbaro.htm)

Alksne (http://www.tna-support.org/newlook/medinfoonline_files/Neurosurgeons/Alksne.htm)

Each has links to their sites at their respective universities (Nat has given Alksnes above). I just wanted to point out that the TNA site lists the "Face Pain Treatments provided" for each of them at the bottom of their pages and MVD is listed under Alksne's treatments provided but not under Barbaro's. (Which is not to say that he wouldn't do one, but just so you know what his specialty is.)

Also, the TNA maintains a list of "people willing to network" about various treatments including MVD. You can call them up and they will put you in touch with people who've had MVDs and may be able to connect you with people who've had them in your area so you may be able to find MVD surgeons that way. The TNA's 800 number is -

800-923-3608

And check out Daisy_G's thread Seeking guidance prior to MVD Surgery... (http://brain.hastypastry.net/forums/showthread.php?t=3196) if you haven't already - lots of advice in there about questions to ask, etc.

Hope this helps. Good luck in your search!

Jean

[NattyNat11]

No Barbaro does do them, I just think his main focus is on the Gamma Knife. He has worked under Jenetta so he obviously a person to turn to in capable hands, I just think it's a little like getting to the Pope if you don't have "ins" and I think Alksne is not only more accesible but down to earth and extremely caring.