Would love to find a great doctor closer to me. hand AVM

hi there, brand new to this site. so far some of the post have been encouraging and some have really caused some depression. i have a hand AVM and it seems nowhere in georgia knows much about avms in the hand. all vascular surgeons i call refer me to a hand surgeon whom never see this kind of thing often. the hand surgeon i have seen so far wants to do a vein graft and has mention possible amputation, might be able to do some embo. he isn’t sure yet because i haven’t done the angiogram or a updated MRI. i have a MRI scheduled this monday night, but i cancelled the angiogram because i recently got in touch with DR Yakes’s office and they sugg. to hold off because if i go to there the office they will do one if i have embo with them. btw,my hand surgeon has only 1 other patient who has an avm. not very reassuring. i would love to see dr. yakes but even more would love to find somewhere closer to me that performs these surgeries all the time. does anyone out there know of a great doctor in georgia or perhaps near washington dc (my sister lives there - good reason to visit her more often.). the avm in my hand is about the size of a large strawberry and is now causing the arteries and veins in my arm to look like a body builder. (veins popping out in all kinds of directions lol. ) i’m only 86 lbs so i’m all hand. ha ha. please anybody with any help.

Hi Brooke-

Ck out this site http://birthmark.org/node/47#georgia which has a "find a doctor" link. lt doesn't look like any of the docs on here from Georgia do AVM's specifically but treat vascular malformations of somekind. They would be "better" options than anyone else, but maybe still not the best. Maybe they could refer you to someone? I didn't ck DC area but you can from the site.

Here is the thing with extremity AVM's...you aren't going to have specialists who are familiar with them in every location. Not all hospitals will have someone who has even heard of them much less treated them. And I always caution people not to let a doctor who doesn't specifically specialize in these to use you as a science experiment. I'm just not comfortable with that!

There are a few centers that can absolutely help you. I'd google for "Vascular Malformation Center" and see if anything pops up at a hospital close by. Call and see if they are familiar with those in the extremities and especially the hand. Boston Childrens, Dr. Waner, Dr. Yakes...these are all places that specialize. You may not have to go to one of them, but if you can that would be my advice. Of course, I'm a bit biased as a Yakes patient myself. But from everything I know, if you can do make it work- Waner and Yakes are the two big names and my top choices.

Hope this helps and good luck!

Shalon

hi brooke-

www.muschealth.com doc name dilantha b ellegala his good trust me lots of exp. u like him. Honest will tell u everything you need to know. i have my surgery march 1st this year look at me now back to work with no problem driving that big fire truck thoughts and prayers will be sent to you.

Hi Brooke. I did a search on here for you concerning hand avms...

http://www.avmsurvivors.org/main/search/search?q=hand+avm

You definitely need to find someone who has more than one patient with an AVM! I totally agree with Shalon...you are not a scientific experiment. Good Luck!

thanks so far, i believe i’m going to travel to john hopkins in baltimore to see a Dr. Mitchell. Does anyone have any input on her? She is on their venous malformations team. thanks for everyone’s feedback.

Sorry to hear about your AVM in the hand. I never heard of that one. My wife is lucky to live close to PHX where Dr. Nakaji of the St Joseph Hospital is one of the world authority on AVM. Lots of published books. Don’t give up but you might have to travel a way to get a good doctor.