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AVM Survivors Network

Back to embolizations after 9 years- venting

#1

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.

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#2

@Erin_H
I am so sorry that you have to yet another embolism!
These just suck! Varicose veins omg!
I am in Northern Cal up by Stanford and my embolisms are done at Stanford by Dr Marks.
He did my first in Jan of 2012 it kicked my butt I got another stroke ( small thank goodness) he wanted to go back in 2 months later but I needed to go back to work to save my job so I had insurance for my roller coaster of health issues .
So in 2015 when I was having new symptoms and I was fearful Dr Marks was going to retire I went back in.
Somehow my body had sealed some of my DAVF on its own and the rest couldn’t be safely touched without risk of paralyzing parts of my face or body I really can’t recall
I am glad you have your mom coming out.
I know my AVM originally had grown pretty quickly and I was anxious to get it tended to before I really understood what I was in for.
As for the insurance as the hospital for the preapproval code that hey got so you have that ahead of time .
I was super constipated After my last angiogram, so just get your home prep for everything you think you will need if you don’t feel good. I.e. ginger ale, chicken soup crackers lip balm , etc.
gel ice backs
Also remember with this opiate crisis they may prescribe pain pills after. But you are in California and Indica and CBD gummies have been life savers for sleep and pain for me.
Let us know how it goes
Hugs
Angela