Re:AVM's of the extremities
We too are headed to Boston in January. My daughter has a likely VM on the ball of her left foot. It was diagnosed as fatty tissue when she was born, but has grown as she has. (She is a very large 2-1/2 year old at 39" and 37 lbs.) She also has an AVM on her spine, but they won't know where until they do the angiogram. Apparently it is very unusual to have 2 malformations so far apart, so we are concerned there are more. While the AVM doesn't seem to cause her pain, the VM on her foot is torture. Her foot is curled up because she walks on the side, so she has pain both from the VM itself and from walking improperly. She is very, very active but clumsy. It doesn't stop her from jumping up and down (on the side of her foot) but causes her to fall a lot. We are hoping to have it all treated at one time and will then be headed to PT to correct the gait.
I feel for the young woman who has had so many embolizations! That makes me nervous about my own daughter. Have you tried Dr. Alejandro Berenstein at Beth Israel in NYC? He's a jerk but seems to be very talented. (Costly too -- not on network. They expected $350 immediately when we walked into their office but didn't warn us about it ahead of time.) Not good with kids, but hopefully he's better with adults.
To the mom in Calgary, I would send a packet of info to Dr. Patricia Burrows at Children's Hospital in Boston. (Letters to docs, MRI reports, etc.). She is an amazing woman, extremely sympathetic and very, very prompt in replying to correspondence. (She calls you directly --doesn't have her secretary do it.) We've been to Chicago, Wilmington, DE, and NYC so far, and Dr. Burrows has the most expertise by far.
My heart goes out to all of you!!!