I was born with AVMs in my tongue and inside my cheek/neck area. Both have worsened over time and rapidly accelerated throughout my 2 pregnancies. I’m 49.
Neither is pleasant but the tongue is what really concerns me, as more and more “blebs” keep appearing on my tongue. My tongue has gotten so puffy and bumpy that I’m afraid I won’t be able to eat, drink, or eventually even close my mouth. How can a person function without a tongue? Or a tongue that won’t fit in their mouth?
I’ve met with specialists at UCSF and UC Davis. Nobody wants to touch it for fear of making it worse so I am hopeless. If I think about it for too long I start to panic so I try not to look at it or talk about it. It was a big step even joining this message board.
I don’t know what I’m hoping to accomplish on here. I guess I’m just wondering if anyone has a similar situation and what they’re doing about it. I had one conversation with a woman who had a tongue AVM treated and it came back so bad that I could barely understand her, which freaked me out even more of course.