I can't believe ater how many years I have possibly found others?....??
I have to clarify first. It would seem that most of the posts above me they or their children have imbedded AV malformations. Nothing evident on the skin itself. Correct?
That's me. I am 24 years old and have been receiving treatment since I was ten.
I have a tumor, AV malformation - venous hemangioma that keeps growing back inside of my left lower leg.
It started out growing in my ankle. My mother noticed the problem but by the time the doctors would listen to her and actually invesatigated it (they declared I had a pulled muscle. My mother knew better
This would have been 14 years ago and there wasn't any sort of protocol.
I have to get off but I have plenty to share and wouldn't mind email either. I'll slip back tonight hopefully...or sooner.