So sorry to hear your struggles but thank you for reaching out.
Stories like yours are what make me understand the risks associated without medical treatment. But again gives me hope because here you are sharing your journey. My prayers are with you.
I’m still in the diagnostic stages, and I’ll try to keep this updated through this.
Josh
I think you’ve had the full range of experience by now! Good luck with making a choice!
In the US, it is good practice to take at least two opinions. It is worth letting you know that the major neurosurgery practices in the US offer a remote second opinion program at a relatively affordable cost of between $100-$400 so don’t feel limited by where you live.
Sometimes the answer can be that it is best left alone, so don’t feel pushed into surgery of any kind, sometimes the right answer is to leave it or leave it for now.
And I forget who said it but while we look upon an AVM as urgent as well as important, neurosurgeons are a lot cooler about these things and unless your neurosurgeon/s are of a mind once they’ve got the scans that it is urgent, consider getting a further opinion or two.
Like I say, good luck with making a choice. We all know that it is often not an easy choice to make!
Richard
My left frontal AVM was also discovered after a (minor) car accident when I was 25. Though mine ruptured 10 days later and that’s when I actually learnt about it. I had MRI and angiogram to confirm further and had surgery to remove 2 weeks after discovery.
I feel most frontal lobe AVM’s are easier to remove and my surgery and recovery had absolutely no issues. I was amazed how lucky I felt to have it removed even after a large rupture and to recover so well.
I’m 30 now and it took me a while to realise my working memory wasn’t quite the same (but still, absolutely nothing to complain about, and this is most likely due to rupture). I do also have a few minor dents on my skull now, one visible on my hair line, but everyone seems to tell me they hadn’t noticed it until I pointed it out haha. The 2 other small dents I never notice due to being behind my hair line.
Overall, I had an excellent recovery and I think it’s so helpful yours has been found before anything serious happens.
I wish you and your family all the best. You’ve got this and will be fine!