I was born with my port wine stain. About 2 years ago I developed a lump under it, and was told it was a lipoma. Went to a general surgeon to have it removed, he refused and wanted and MRI. At that point I found out I had an AVM. I have had it embolized 3 time with black onyx, but it kept growing back.
At this point I have had 2 ethanol embolization with Dr. Yakes. It definitely has not been easy, but I find great strength in my kids. The amount of pain I live with daily is unreal. I never imagined it would develop into something else. I have always been asked about abuse and people saying that I have a red bloch on my back, then having to explain that it’s a port wine stain and I was born with it.