I was lightly warned before I got pregnant that the Avm might show back up because of the hormonal shift (and then I had a c-section on top of it). I had convinced myself it wouldn’t come back/grow. I’m apparently very good at magical thinking. So when Dr Yakes’ office called to say there’s area that could use treatment, I was genuinely shocked. Sigh. I have to go back this June after 9 years of freedom from the 60+ embolizations over the 5 year before then.
The original AVMs were in my right abdomen through to my right torso back, and then one in neck. They’ll re-do the MRI in Colorado to see exactly where they need to work and then I’ll have the treatments the following two days. I’m dreading the embolizations and hoping it’s a one trip venture. They were hard enough when I was younger, but now I’m 41 and have a 2 year old.
Medically, I feel like I never catch a break. We were relocated to Southern California last year and it’s starting all over again trying to explain this thing to local docs who clearly don’t “get it.” If I hear one more time “Oh, like varicose veins” - I might scream. There’s been more conversations about AVMs since I was first diagnosed in the early 1980s but it’s still so rare that a lot of doctors really don’t understand it. Plus, because mine isn’t in the brain it’s especially confusing to the ones who think they know what they’re talking about.
I’m so incredibly grateful to have our son. We tried for 6 years before this miracle showed up. Just feeling kind of overwhelmed at the idea of going in again and then healing with a 2 year old needing my attention.
My spouse just got promoted so time off isn’t the easiest and since we now live in California I’m going to have to fly my mom out to watch our toddler.
I don’t know. Part of me just wants to put it off… like forever… and just deal with the jabs—- but I don’t want it to get out of control like it was when I first started treatment and then need a crazy amount more treatment trips.
My insurance says Dr Yakes is in network so it should be okay, but in 2007 I had to battle with an insurance company who said the same thing—- I really don’t want to go through that again. Ugh. It’s a lot to emotionally deal with.
Have any of you had a long break between treatments? How did going back go for you? Feel free to be honest. They were not fun when I was in active treatment, I remember that much.
Or any advancements outside of embolizations that I’ve missed over the years?
Thanks for listening.