A good friend of mine in Greece has a son who was diagnosed a few years back with an AVM in the Tongue and was treated with glue to close the majority of the offending veins. Now, about 7 years later, it appears that there is re-growth and possible need for additional treatment. He would like to get a second opinion from a USA based Doctor or Medical facility prior to undergoing additional procedures. I have spent a few days going over the posts on the AVM site and have seen a number of individual Doctors and facilities mentioned, but no specific discussion about which may have the most sucessful expierence. A few years back I had a rare brain tumor and was able to find a number of discussions about various Doctors and facilities and was hopeful that this type of list or discussion blog might be available for a facial/tongue AVM. This information was extremely valuable to me and it seems it would be a normal item for a rare medical problem like facial AVM where most Doctors and Facilities would not be familiar with how to proceed. I soon found out in my situation that if the Doctor did not have a fair number of paitents who were sucessfully treated, the outcome statistics became very poor. I would appreciate any help that this group could provide in my search to help out my friends son.
Hi Billy Joe, Not sure that list of DR/hospitals exists anywhere on this site.
One thing you can do to account for folks that have posted but might not see your post here, is to go to the upper right of the discussion page, and under SEARCH, type in tongue.
There are 17 pages of messages that contain the word tongue. Lots of reading I know, but it might give you some hints on where people have gone.
If you find a post where the person talks about treatment, but doesn’t say where they were treated, you can click on their name, then read their profile, and it might say. Or post a comment on something they have written. If they have “follow the thread” selected, then they will get an email saying you have responded to their post. That might trigger more info.
Hope this helps.