AVM growing despite embolization and Propanalol

My daughters AVM that is on her neck and chest has now grown into her ear. It's touching her ear bones. It's also disfiguring her face. Help

Hi Jennifer. I will post again tomorrow. I have a short layover tonight. I know of some other members in the same similar situation. I will be praying for your daughter!

I'm so sorry. My son's doctor is Dr. James Suen in Little Rock, Arkansas. He is one of the best at halting head and neck AVMs. His email is ■■■■■■■■■■■■■■■■■■■
Send him pictures and your daughter's story, and he will email you an opinion. You can send him scans when you have gathered them.

Thank you, I will contact Dr. Suen. Any advice is appreciated.

we have contradicting recommendations, our interventional radiologist said removal was best practice and optimal, but the plastic surgeon working with her said he disagreed and suggested to only do embo and wait. my son bleeds a lot and we do not want to be passive. we are getting a third opinion in Little Rock with Dr. Suen's partner before we move forward. I'll come back with our feedback on my son's avm, perhaps we can all learn from each other... BEST OF LUCK!!! -Ana

My daughter also bleeds alot and had to have a tranfusion. The only thing that has worked to date is embo's they have done 5 different veins. They took my daughter off propanolol after a yer becasue it did not work. They sugeested Lysteda, but we refused. We are going to do laser, plastic surgery is not even in the picture yet - not safe. We were given dr. Waner in New York and Dr. Belein in Germany for the laser- but are being told that insurance does not cover this procedure - we are seeing Dr. Waner July 23--- hope can definitley learn from everybody.