I have a possible small aneurysm.
I am a writer, I write, and I found myself posting long emotional diatribes on social media, particularly Instagram. X is now on Instagram. Her friends are on Instagram, all my theatre kids whom I love like family, and I realized that I could be terrifying them and making them sad. So I cut most of my latest Instagram post, which is the second one below. The whole story will be coming out through the blog slowly, but for now, feelings.
Instagram / Facebook post: I have never felt mixed emotions like this. Vindication. Relief. Terror. Concern for my family. Worry I won’t be able to advocate well enough for myself. Elation that many of my symptoms might be “fixed.” Horrified that fix might be brain surgery. Anger at the ER director who discharged me without pain relief 5 days before this was discovered. Disgust at my neurologist who tried to dismiss the idea of an MRI and made his receptionist give me the result. Astonished that something concrete and physical showed up as a result of a disease without proof. Anxious for Wednesday.
A dear friend who has been managing her husband’s disabling chronic illness for years (we are each other’s sounding board, venting partners, and rely on each other for support) wisely suggested that I go to get my own copy of the MRI report which I did on Friday. It was… a bit more concrete than I expected. (More on this in a future entry). I think I have this memorized: “tip of basilar artery somewhat bulbous.” At the end, at the summary: [Blah Blah angiography type test] recommended to rule out possible small aneurysm.”
The Basilar artery. That middle one. There is a type of Migraine called Basilar Migraine that is extremely rare. The friend I mentioned above, Stacey, found a scholarly article written by one of the top headache doctors in the world that was both helpful and not. The patient in question did not have the left sided numbness and tingling I do, but she did have a lot of autonomic symptoms (stuff in the face) that I have had for years. My right eye has been droopy since August (called ptosis). Around the time I started having severe menstrual migraine, after Zo was born, I developed a new symptom of my nose “flaring” and getting very red before, after, and during some migraines. But that is odd since it started so long ago. My MRI in 2014 was clear. Even odder, so was the CT I had at the ER in August after my second stroke-like migraine which I was calling hemiplegic, but now I’m not so sure…
Last night I went with my family to see our high school’s theatre program pilot the musical Newsies. These are my people and this is my world. As a three year board member of our local youth theatre group (not connected with the high school except that the Drama teacher co-founded the organization and many of “our” kids do both high school drama club and our productions). It was so healing and cathartic and beautiful to see so many people I love, exchange so many smiles and hugs, and watch kids I’ve grown to love rock that stage.
I could tell by looking into people’s eyes whether they’d seen the my Facebook post or not [using humor, saying my Bulbous Basilar Artery and I had decided to go “Facebook Official” with our relationship and the future of that union would be determined Wednesday – “it’s complicated.”]. Concern, sympathy, a little surprise. Because I looked good, felt good, and answered “Great, how are you?” I had a fantastic time, stayed a while and gathered with all our kids and production staff in the hallway and took pictures.
Instagram / Facebook post: Then I came home. I wasn’t going to look on the Internet you guys. But REALLY? I mean of course I did. Besides some validating things about my symptoms – as in, this is definitely what I have – there were scary things too. 3:30 am, everyone asleep, and I read: Basilar aneurysm more likely to rupture (11% vs .07%) and more likely to be fatal if it does. Only the “balloon” type, though, not the more just enlarged looking type. What does “bulbous” sound like to you? To me it sounded like sudden tears (either meaning) of terror. My head was hurting, everyone was asleep, and I read the “seek medical help immediately” symptoms. I’ve had 2 of them constantly since August, 2 more variably. Well I drove myself to the ER, clutching my MRI report, and stood shaking and sobbing at the front desk. They were so nice. The nurses were so nice. But then I was met once again by a surly new (to me) doctor. Again, I received Tylenol for pain. Again, I was treated like shit by the man standing there skeptically with his arms crossed. It wasn’t rupturing right then so he didn’t care. I did get sedated though. Which meant when I got home I slept like a rock for 8 hours. The house filled with the girls’ best friends today, I managed. I cried. I noticed many instances of aphasia and decided it was nerves. How does it feel to have an aneurysm in between the 1st and 2nd tests? Like you’re a grenade with a loose pin. And everything matters.