baby with AVM in TN
Hi everyone I am new here. My name is Cindy, and my youngest just had surgey 2 and a half weeks ago to remove what we thought was a cyst. I was shocked when they said the pathology reports came back and that it was AVM. My son is 10 months old.
When we first discovered this, we discovered a HUGE lump on his collar bone, I thought that it was broken and I didn't know how it happened. We then has an US where they told me that it was a cyst. After meeting with the General surgeon at Vanderbuilt Childrens hospital in Nashville, who did another ultrasound, they too said cyst. I think this is why it was such a shock to leavn it was AVM.
Now that it has been 2 and a half week, we noticed this past Saturday that this huge lump that he had is already back! Not only that, but after doing some research I read that there can be a link between his AVM and his hemangomia that he has on his face. After thinking, I realized that they both appeared about the same time.
I am now on the search to get my son the care that he needs. I want to see a vascular surgeon, but I have no idea who we should see and where to start. Vanderbuilt childrens hospital does not have a vascular surgeon. I called my pedi to get a referal two days ago. She said that she had nothing that said he has avm so she was calling his surgeon to request his pathology report before she could give me a referal. Two days later, I am still waiting. I even called the surgeons office today to request that they send it to them, and still NOTHING. I am so frustrated.
Any help on what to do? Who to call? We have Tricare insurance if that helps.
Anyone know why this would come back s fast? Is it something that can't be operated on? Oh, and when they did the US, there was no blood flowing through it at all. Not sure if there is blood flowing through the new growth, as I can't get any DR's to see me. His surgeon was on call this week, and told me on Monday that he could wait to be seen until next week. I am really upset by this surgeon, as she is also the same one that told me that he has AVM, but if he was healing ok, we didn't need to come back and see her at all!