Our 14 yr old daughter was born w a port wine stain on her mid thigh… first called a birthmark, then hemangioma, then a cavernous vascular malformation… 5 laser surgeries were done 6 weeks apart. Around 12 it started to grow rapidly… had more mri’s and a echocardiogram/ultrasound of the lesion. Was diagnosed as a high flow AVM by an interventional radiologist. Sent all tests to Bostons Childrens Hospital… A Harvard Teaching Hospital. They have a team from many different areas (ie cardiology, radiology, etc) evaluate… they believe it is a Glomuvenous malformation. That’s a new one to me. They were able to read results and see mri’s but i don’t think they got the echo of the lesion. Just wondering what you all think…
BritsMom,
Never heard of them, but quite a lot of info on the internet about them. From what I’ve read, would be genetic. I’m not sure if there is a direct gene test for confirming.
Some interesting articles I found…
The following one may not be relevant, as is multiple, disseminated (i.e. spread like seed) but contains a treatment…
Hope you get more answers!
Very best wishes,
Richard
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