It’s good to hear from you!
My experience is completely different, so it shows that where we have these things drives how it affects us.
My AVM is a dural arteriovenous fistula, which simply means that it is in the dura mater covering of my brain – not deep – and I would say it first showed itself in about Sep 2015, when I was nearly 50. I could hear a very faint whoosh with my head on the pillow at night. By the January, it seemed louder so I started Googling to see if it was anything to worry about and all I could find was people being told “tinnitus, put up with it”, so I ignored it. By April 2016, it was definitely louder and I was spurred into more Googling. That time I found “pulsatile tinnitus” and AVMs and frightened myself with my self-diagnosis but everything fitted with how I was.
I went straight to my doctor and she referred me to an ENT man for “tinnitus” initially. He did a bunch of tests of my hearing and said, “so, Mr D. how long have you had tinnitus for?” and I said “oh, I’ve had tinnitus for years. [Like 20 years!] I’m not bothered about that. It’s the pulsatile tinnitus I’m bothered about.”
“Pulsatile tinnitus?” he confirmed.
He went to find a stethoscope and came back and plotted over my head with the stethoscope. When he reached my right transverse sinus, he just stopped and listened. I know you’ve found it, I thought, because you’re not moving. Come to think of it, I had managed to press my phone to the back of my head and record the noise before getting to see him, so I knew I wasn’t imagining the sound.
“Well, Mr D.” he said "You’re my last patient of the day, but my most interesting patient of the day. "
“I’m not sure I want to be your most interesting patient of the day” I replied.
“You have what we call an arteriovenous malformation” was his confirmation and that changed the course of life for the last few years.
I crashed emotionally and as I had to wait for scans and referrals to neurosurgery and then for an embolisation, it got louder and louder and started to affect my balance. It got very noisy, like a washing machine on pump-out all night.
Fortunately, I had an embolisation in Apr '17 and it seems to have fixed it. My head still feels weird sometimes and I’ve got pulse noises at night that I didn’t used to have but I’ve decided to ignore anything else unless I get stronger symptoms showing. The people I met on here helped me to go through the “change curve” and I try to help others as they arrive, just as disturbed by life’s strange and unwelcome turn of events.
In regard to your shyness, I understand that having a big, visible mark is a big deal. It really is, so I completely get that it is a really difficult thing to deal with. But I was a pretty shy person until the age of 40, when I decided I was old enough by then for my opinion to count for something. I decided I was old enough, senior enough and experienced enough to share my views with just about anyone. You know what? I should have thrown those self-imposed shackles off years before.
So, put out of your mind what anyone else thinks and just live your life how you want to get on with it.
I’m very, very ordinary. I don’t stand out anywhere, except when I travelled to India once, and in Antigua, where my skin & hair colour made me the obvious foreigner, so I have no real experience of standing out. But throw off the shackles if you can and as early as you can. Grow your own confidence and make of life what you want. Don’t let your view of others alter how you want to be.
Hope these thoughts help. That’s what I mean by them.
It is good to make your acquaintance!