Hello to everyone and anyone in here.
I want to apologize for not participating in discussions (although I am reading them). My feeling is I don't yet have a lot of wisdom to offer, though I am appreciating the wisdom being shared. Lots of times, when reading comments, I just want to say, YES! or Why didn't I think of that?
So, I haven't had surgery. I think because my bleed (half my lifetime ago, 32 years) or my AVM is in a place that isn't operable. That's what I recall being said. Also, I didn't have health insurance. I did for a few years, but I was busy hiding my condition from my employer so I wouldn't lose my job. And now, once again, I don't have any health insurance.
So I haven't been to a neurosurgeon in eons. I do have a general doctor and an epilepsy doctor. But no neurologist, no neurosurgeon. Because, I think I've been living in denial. I've been thinking I "had" an AVM, a bleed, and now it's all done. And it left behind seizures, as a result. As if the two weren't really connected. Nobody has told me otherwise, not my doctors. And family and friends also act like whatever happened is done. Probably because that's how I present it. No. big. deal.
That's how I live my life. I had a baby about 11 years after my AVM. I am planning on driving all over the country. Right now I baby sit my grandkids, which includes being alone with them for hours and driving them around. I don't really give it a second thought. But I am starting to wonder.
Is this really done, no big deal, all finished? Or am I living in denial?
What got me wondering - and a bit depressed and scared -- was the reaction of a man I had been seeing, when I told him about the AVM.
We've known each other casually probably 10 years. But just started "dating" a few months ago. And it's just dating at this point. Sunday he asked me about the medic alert necklace I wear, and I explained it was for my anti-seizure med. And - perhaps too much information - explained that the seizures were the result of an AVM bleed in 1982.
See, I thought we knew each other well enough. And he is a retired surgeon, so I figured he'd been fine with it. But he wasn't. We were talking about the AVM a little and the seizures, which I explained I haven't had one since 2006, when I'd gone off phenobarb, but now all is good. (I mean, I drive and everything). And that my seizures weren't grand mal, very mild - mostly an aura.
He got really...wierd. Which I guess is normal, when someone tells you this stuff, it is kind of heavy. He started talking about auras and religious paintings, and how he loved the work of this one artist. We were in Starbucks, and I had my iPad, he asked me to look up the artist. He jumped up and went over to another table and showed the people there the artwork. People neither of us knew. And that was the end of the discussion about my AVM or seizures or anything. It was all artwork and mysticism.
I mean. A bit of a reaction, yes? He also backed out instantly of two things we were supposed to do, one later that day, one for today. And I haven't heard from him since.
Now, this may be just me being paranoid. But - I think not. I think he freaked out a bit. He'd been talking before this about our relationship, things were moving gently but nicely along.
What's got me worried is - if a doctor is freaking out about this - if its giving him pause as to whether or not to continue our relationship - what have I been missing?
As I said, I've been living as if this is nothing anymore. But apparently, it is something. I started re-reading things about AVM's, and wonder.
Is another bleed likely? It says that the likelihood is 4% a year. Somehow I thought that if I went this long without it, it would trickle down to zero. But, other things I've read make it sound like you multiple that each year. So that, 10 years after, your chances (untreated, like me) are 40%. I'm 32 years out, so that brings me up to over 100%, at worst. At best, my chances are bad.
And of course, I have high blood pressure (on meds) and high cholesterol, some little irregular heart beats I haven't bothered to tell my doctor about and I'm...well, old.
So, what are my odds of stroking out? Should I really be alone with my grandkids, driving them around?
If my condition sends a retired surgeon into a bit of panic, and possibly makes him retreat, what should my reaction be? And when do I get my Medicare and Obamacare? Because right now, I can't afford much at all....
This is scary. I preferred life in denial.