Hi @dablues, I can imagine that you are confused about what is going on. Clearly you need to find some answers. Let's see how the community can help you know what questions to ask and which specialist to see. I'm tagging @avmcbellar@gingerw@baxtersmom@astaingegerdm and @cherelle in this discussion. I'm sure others will jump in too.
I have a few questions to consider:
Has internal bleeding from AVM been ruled out? Is your tiredness a new or worsening symptom? Has the foamy urine changed in the 5 days since the CT scan, i.e., gotten less or more?