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Ballroomann 02-14-2013 09:16 AM

AVM in the neck
Hi All,
I'm new to this site, and could really use some helpful information. My 18 month old had surgery on what we thought was a cyst. Pathology report says its an AVM. My question: Since he had the surgery and the mass was removed do I have to wait around for the thing to grow back or is there something or someone I could take him to who could expedite treatment?
Has anyone else had this happen? My ENT who performed the surgery assures me that he got everything out, but after reading so many posts of people having multiple surgeries I am really beginning to doubt--especially since the dr didn't even realize it was an AVM he was removing.
Oh another question: This AVM was no-flow. Is that typical for an AVM in the neck? Is it good, bad or indifferent? I feel like I am in the dark about so much and I can't effectively seek treatment for something I can't get information about! Any help, advice or personal stories would be most helpful.


tonilynn910 02-14-2013 07:32 PM

Keep watching it and also you may want to meet with an AVM specialist who knows what they are looking for. I have had an AVM for 35 years that's how old I am and have had to have a few treatments to shrink it. I saw Dr. Berenstein he is the best. He is located in NYC.


Ballroomann 02-16-2013 05:22 AM

Thank you Tonnilyn.

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