Hi there Bellas,
I was shocked to hear a neurologist dismissing a AVM like that! He should have at least had it checked out more thoroughly to see how big, is it ready to rupture, etc. not tell you it’s no big deal. It can be at some point…tests can help you figure out how long until it does become a problem. Your son is young and will bounce back faster than an older person like me.
Just like Michael I had my DAVM for over 5 decades and didn’t know it (found by sheer luck during a test for another problem). Migraines yes, occasional bouts of vertigo for no reason, my arms going tingly numb from the elbows down. My DAVM was in the right occipital about 2 inches behind my ear. MRI didn’t find it, CT didn’t either…CT-Angio found it. Hadn’t bled yet but about to so I know from reading in here that I was VERY lucky it was found when it was. My neurosurgeon hadn’t seen an AVM in 19 years, but knew exactly how to treat it (he has over 25 years experience) and did an excellent job removing it (only took 3 hours). Researching what I could about DAVMs helped me a lot knowing the options and the risks, took a lot of the fear away for me and my mom so we’re like you. Knowledge can be powerful.
I wish your son all the good luck in the world getting this taken care of and that his tremors go away with the AVM. Please keep up posted, we care.