That time I saw swirls…

One of my favorite parts of reading any book, is always trying to guess what will happen next. Will the two best friends realize they are soulmates? Will they find out who the murderer is? Will she confess her secret to her husband? I can’t help but assume I know the answer with the turn of every page. It is almost a compulsion in my real life to gather as much information as possible to try to guess the next outcome. I am notorious for constantly having 50 questions to any given scenario. Being nosy isn’t a real major in college, but journalism was as close as I could get.

Last year, the day before baby girl’s first birthday party, I had my first ocular migraine. I was working when suddenly I saw swirls when I would look at anything. Having recently turned 33, I had assumed my vision was catching up with my age. The swirls, later named auras, would increase until my vision was completely warped and my peripheral vision became blurry. Within minutes the back of my head began to throb. I placed my hand under my hair and consciously looked for blood because the pain was so intense. I began to panic and within the hour went to the emergency room. After running bloodwork and completing a head CT scan, I was diagnosed with an ocular migraine. It seemed odd to me to suddenly start having migraines at 33, but it happens and it is not unusual or life threatening. A positive outcome that I did not see coming. I chalked it up to stress and interrupted sleep and moved on.

Nine months later while working again, the same vision changes began to occur. I knew this time that the vision would return and the only option was to wait. Just as the first time, the vision returned to normal after an hour and the pain began to overtake the left side of my head. With my eyes closed, it felt as though my head was swelling from the pain.  The next day my head was sore and I had vertigo. For days after my head felt fuzzy, which was different from the first episode. It was recommended that I see a neurologist just to cover all my bases. I thought for sure I had all the information to determine the outcome. The neurologist recommended an MRI, but optimistically assured me it sounded like textbook migraines and could easily be treated. A positive outcome just as I thought.  

Have you had a brain MRI? It sucks. There isn’t a more eloquent way to say it. They wrap your head in a cage a ’la Hannibal Lecter and although they offer ear plugs, it hardly drowns out the banging in your ears. If you have ever had your head stuck in a bucket while lying in a coffin at a construction site, you have more or less had a brain MRI. I followed through and left my MRI patting myself on the back and returning to my regular life.

When my phone rang several days later, I recognized the number as my neurologist. I thought what wonderful customer service they have just to call patients to let them know they are fine. I cheerily answered and the nurse on the line informed me that I in fact have a cyst in my brain and Chiari malformation, a condition in which your brain tissue extends into your spinal canal. Isn’t it fun learning things you didn’t know existed can go wrong with your body? Who doesn’t love a twist in the story? Did you see it coming? I did not. Bonus twist, Chiara malformation is congenital, meaning I’ve had it since birth. Another twist! I now have to have follow up MRIs to ensure that it is benign. Where’s my bucket and how far to the site?

I spent the next hours gathering information. I would need it to ease my mind that so often races with various versions of any event.  I researched. I emailed my neurologist. I emailed my PCP. I reached out to friends in the medical field. We are always scared of the unknown. Sometimes it can be beneficial and the reward from completing something that formerly scared you can be tremendous and often life changing.

So now we wait a few months. And we repeat and see what my twisty cyster (Grey’s anyone?) looks like and go from there. I’m not trying to guess what will happen next, but I’m ready to see. My little wake up call was unexpected and not quite happily received, but there may be a great twist waiting. Keep turning the pages because quitting the in the middle of a book just isn’t an option.