Venous angioma

While trying to help make the best decisions, I always read up on the terms used by my doctors wen they describe any diagnosis. Ill talk to ppl in my family that are in healthcare and read reputable sites…
My newest information has me going in circles, it feels like. The Dr we saw last week said my type of avm is actually a venous angioma. These are not removed and I cannot find literature on symptomatic venous angiomas… I was dealing with all of my symptoms over a year before going to the Dr, and it has been a year this week since diagnosis. How can I have all the signs of an avm, and not have one? I am so frustrated.
I used to be an outgoing and loving mother and wife. I struggle on a daily basis with just being able to maintain the kids until Zack gets home, and have at least one person to help me with them when I can’t function. Until this week. I have let everyone know what Dr said and now no one is willing to help, not that there were folks beating down my door to help, lol, but I had two ppl completely ignore me on the phone when I told them its inoperable and we r going to try to manage symptoms. One just started to talk about boyfriend stuff. I listened for maybe ten min, then just had to get off the phone…
I am just really bummed, I was hesitant to tell many ppl and once I did, its like ok, they didn’t care anyway, why bother? Sure, I can send my money and scans to some amazing Dr, for what? Them to say angiomas aren’t removed, its just a waste. And I don’t think I can handle another doctor telling me the pains aren’t from it, its just in my head. I’m so irritated …

To my understanding, venous angiomas are untreatable & often associated with either an AVM or CM (Cavernous Malformation). http://www.ncbi.nlm.nih.gov/pubmed/21340702
As frustrating & exhausting as it is, perhaps it would be worth a 2nd, 3rd opinion with experts mentioned throughout the site, just for your peace-of-mind?
Take care & hang in there.

Thanks Patti,
I am contemplating how to go about the next opinion, probably spetzelr just because he is most knowledgeable. I am so thankful for your support :slight_smile: have a good day!