Here's my update. My DR refused to give me a referal. She said that the GS at Vandy was it. There was nothing else. I called my insurance company and told them I want a second opinion from a vascular surgeon. They said that since he was refered to a general surgeon they can't give me a second opinion appt unless it is to another general surgeon, and that I need a referal from my DR to see a vascular surgeon (can't find one near me at all that will see babies anyway).
I went back to my appt on Friday to meet with the GS who was over an hour late to my appt! She was stuck in traffic aparantly. I understand things happen but we were stuck in a hot room with 2 kids. Had they told us that she was stuck in traffic we would have left to eat and come back. I just wish they would have said hey she is stuck in traffic. I then felt rushed when I saw her because I knew not only were we waiting so were others.
Anyway, she said that it has not come back, but it is healing stuff under there that is causing the mass? Her nurse told us that AVM is her specitality and that she travels around the world dealing with AVM. I am not sure what to even think about that. I told her that I want an MRI she said OK. I am waiting on my phone call for that appt. She doesn't think the spot on his face is a hemangomia but a bug bite. UMMMMMM he has had it since July! Not a bug bite. She said she could refer him to dermatology to have that looked at ? I don't understand ( I mean I get that, but not that it is a bug bite). Anyway, I will deal with that later. My concern with it is that there is a link between H's and AVm meaning that there could be more in his body.
I did find out that there is a childrens hospital in Ohio that studies AVM, and they have it as part of their general surgery dept from what I have read. So, if he has more, I will be calling my insurance and telling them I want a second opion there if the MRI shows more.
Does anyone else have any suggestions? I know this part of the site is slow, but I would love to hear stories from anyone.