All, don’t know if this has been posted anywhere else on the site, but I just stumbled across it (in pondering who I’ll see next as my neurologist isn’t well-versed in MAV and is ready to kick me to the curb). It’s a list of docs in the US, who, I’m guessing would be fairly experienced with MAV. (It’s got several “top docs” that’ve been mentioned here, and then some who I haven’t seen before.) Maybe it’ll be helpful for others who are still looking for a good doc in their area:
(And, no, I haven’t read anything else on this guy’s site, so I don’t know who this Dr. Robb is. Just like his list… )
You can add Ravi Samy, MD to the list. He practices out of University of Cincinnati. Love this guy and is totally on the ball! Gave me the answers I had been searching for and is wonderful to work with. He even answered questions from his ipad when I emailed him. Very thorough and kind.
Funny you just posted this, I called Dr. Fife last week as a recommendation on this board. He is no longer taking new patients.
I asked if there was anyone else like him that is familiar with mav. I mentioned Dr Robb as he is listed on this site as well.
She said, stay away from there, dont go there you will be sorry. I said “really” as I was shocked and couldn’t think of anything else.
She just told me it would be a bad move. Dont know, word of mouth, but something to consider. Kayera.
Don’t know from Robb, but I’m quite content with John Carey at Johns Hopkins. He’s not a neurologist, though, just an otolaryngologist. I’ve no idea whether he’s a wonderful mensch and I have a sense that he doesn’t answer patients’ questions outside of appointments . . . but did the job. He did coordinate with my neurologist perfectly well.