Sarah (and Becky) did a ton of research on subvalvular web, pulling scientific research, finding the medical billing codes for the procedures, and then doing a search within her systems. I'd read that this is a condition often found and corrected at birth or in infancy, and Sarah collaborated this info. I'll contact her main lead, Steve Neish at Texas Children's Hospital in Houston tomorrow. A second person recommended is Chuck Fraser.
According to Sarah, it's not completely unusual for adults to be treated by pediatric experts...., when the condition is primarily a childhood condition. After all, the pediatric surgeons end up being the folks with the best/most experience.
Sarah's research indicates Cleveland Clinic does more of these procedures than anywhere else. I want to go through some of the stuff she forwarded me to see if I can cull out a name or two.
I spoke for a few minutes with Aunt Denise too, and contacted Dr. Hallman's office at Texas Heart Institute based upon her suggestion. Hallman's office says he IS able to handle subvalvular webs, but didn't have any specific stats on how many he's handled in the past year. (Denise had found 22 cases between 1999 and 2003.) I've asked the appointments person to please dig a bit deeper and phone me back with more info.Barbara (Dad's friend, not my mom) has two daughter-in-laws who work in cardiology so she has forwarded our call for help to them and they are checking in their circles to see if they can give a recommendation.
Jeff (Keith's manager) continues to work on this project with us, and sent us paperwork today to complete for getting into Cleveland Clinic. I have the paperwork on the side for the moment since my cursory review indicated we need to have the ECHO (not yet done) and the rest of the medical history from here submitted as part of the packet. My gut is that this is the place we need to be, but with it 18 hours from home I want to make sure we get our act together before trotting off to see them.
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