Hi there.
It has been about three weeks since my AVM diagnosis, and I am slowly starting to understand more about what is in store for me.
I have an appointment on Thursday with a vascular neuro-surgeon to discuss my options, but it sounds like I am looking at an embolization and then surgery for my AVM, which is located in my left frontal lobe.
I had an MRI done initially because I was having some really weird memory issues, and I got concerned. I mean, I will forget entire experiences, even if I am looking at a picture of myself doing something. And not stuff from childhood --- a trip to Mexico with my boyfriend in April 2011, a friend telling me she is pregnant a few months ago, a night out with my girlfriends earlier this spring. I forget what the inside of places look like, even if I have been there dozens of times. I forget details of things I have done or places I have been. It's totally weird.
The MRI showed my AVM, which is not bleeding, but seems to be causing the issues with my memory.
I am scared and confused and pissed off and frustrated... as I am sure most of you were when you were first diagnosed.
I am curious if I can get some idea of what to expect. I have a whole list of things to ask my surgeon, but waiting for that appointment has been really hard. My mom is a nurse in KC, and she is planning to come up and stay with me after my procedure, and my job is amazing and I have short-term disability I can use, but I just have SO MANY questions.
What is surgery like? What is the recovery like? I have read online that if they can get the entire AVM in one shot, then surgery can come quickly afterward, with only one hospital stay. How much ICU time? How much recovery time at home? And what gets better? Will I recover memories, or simply stop forgetting new things? What else will be limited? Driving? Speech? Mobility?
Thanks in advance for anything you are willing to share,
Stephanie