Sometimes finding an online community that one fits into isn't easy. I've been on parenting boards, homeschooling boards, but the one I feel most at home at is the AVM Survivors network. An AVM is Arteriovenous Malformation. My AVM is on the right side of my face & neck. I've had it referred to an AVM,VM and VVM (venous vascular malformation). Before finding this group, I had never met or talked to another person with a facial malformation similar to mind. Most of this group have brain AVMs, completely different than mine, but there are a few of us with facial VMs. To speak with someone who knows EXACTLY what it's like. To discuss past treatments, future options, to vent frustrations, fears.
There is a new treatment that my Interventional Neuroradiologist wants me to have. It's Interlesional Bleomycin. A minute amount of a cancer drug is injected, causing the veins to collapse. (the easy explaination) After a number of treatments, my AVM will be gone. Day surgery. No complications to speak of. So, you might ask, what am I waiting for?
Well...this may be hard to believe...I know what I look like now. I'm fine with it, it never bothers me. How am I going to look after? What if something does go wrong. Last time I was treated, I had Bells Palsy for a few weeks. What do I tell the kids: Mommy didn't like how she looked? I teach my kids that it doesn't matter what a person looks like, it's how they act, what they do. So, is this hypocritical? On the flip side, I think I should get it done, so they don't get asked 100x "what's wrong with your Mom's face?"
Sometimes it would be nice to just blend in with the crowd. Unless you look unique, you don't honestly know what it's like when people come up to you and remember you from a brief meeting, simply because you look different. For example: I had E in the ER a few months ago. During Christmas shopping, a woman approached me and asked how E made out. E wasn't with me at the time. Would this woman have recognized me if my facial malformation wasn't there? Probably not.
It is part of the ME. It's made me who I am.
This decision is not an easy one, not from a medical point of view, but from a personal one. As a child, my condition was managed by my parents. I must now (and should have 10+yrs ago) take ownership of my AVM.
3 comments:
I'm glad you found a place to share your feelings about it all with others who know where you're coming from.
I never even think of your AVM when I think about you...so when I came to this posting to see what online community you'd discovered, I was surprised to find it was for people with AVM's.
I can understand why your juggling all those feelings. It certainly gives you a lot to think about.
Though knowing how good a mother you are...I know you'll find a way to express to the kids how having it done if you chose to is not about changing simply to be "pretty" or "prettier".
You are a beautiful person, inside AND out, and with your AVM gone, you'd be even more beautiful by societies physical standards.
I had thought that at your age, and still with it, that there was a medical reason beyond personal choice that you had not done something about it. How risky is it? What are the odds of Bells Palsy again? temporary or permenant?
The current treatment choice has only been available since 2003. Now that the kids are getting older, I'm considering the options, the side effects, etc. My Dr. reassures me that my Bells Palsy episode was rare, but hey, it was rare when it happened the first time, why couldn't it happen again? It's still the same part of my face, the same areas that are being treated. It would be a temporary, though.
Thanks for your kind words. I usually forget it's there, until some stranger (ok, the freezer delivery guy this morning) asks about it.
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