IT HAPPENED TO ME: My Brain Was Too Big For My Skull

My brain was too big for my skull and it was pressing down on my spinal cord, causing severe neurological issues.

Mar 7, 2014 at 11:00am | Leave a comment

“Arnold Chiari.” 
 
“Pardon me?” I had to ask. Because that’s what doctors do. They speak gibberish.
 
“Arnold Chiari,” he repeated. “It’s a malformation of the brain.” Oh, clearly, I thought.
 
He then proceeded to “explain,” using words such as “cerebellar tonsils,” “foramen magnum,” and the phrase I remember most, “hydrocephalus as a result of an obstruction in the cerebrospinal fluid outflow.” Trust me, I only remember because I wrote it down.
 
Surgery would have to be scheduled, he said. Brain surgery, that is. There’s really no way to phrase that so it doesn’t sound daunting. Trust me, I tried.
 
The neurologist concluded the visit with this friendly reminder, “Don’t do anything dangerous like riding a bike. If you fall off and the impact is too sudden it could shift your brain stem and block your airflow. You’d be dead within a minute.”
 
Let me rewind a bit. In 2010 I was on a four-month long trip in Europe -- UK, France, Italy, Turkey and Greece. My hair started falling out by the handful in Scotland, my knees were so bad I could barely walk in Turkey, and by the time we got to Greece, the hammering gnomes inside my head made every day a living hell. Time to go home? I’d say so.
 
I spent the next four months going from doctor to specialist and from medication to natural remedies.
 
“Cluster migraines,” one doctor diagnosed and put me on Topomax, an anti seizure medication. One week, eight pounds, and several violent mood swings later I said, "I’ll take the pain, thank you."
 
“What color is your pain?” One naturalist asked me.
 
“Black, like your eye is about to be,” I wanted to respond.
 
So, I finally went to a neurosurgeon who took one look at my chart and immediately ordered yet another MRI with contrast injection. The results were in and I could claim my prize. And that brings us back to the bike riding comment.
 
He finally put it in layman’s terms for me. My brain was too big for my skull and it was pressing down on my spinal cord, causing severe neurological issues -- including but not limited to headaches, tinnitus, impaired coordination, chronic fatigue, muscle weakness, rapid heartbeat, extreme thirst and chronic hiccups.
 
On top of this, the poor surgeon had my little collagen problem to deal with. You see, if he did the normal brain surgery and left it at that, my brain would eventually fall down and crush my spinal cord. So he had to fabricate a duroplast hammock for my brain to rest in. I can’t count the number of times I got the, “At least now you’ll be relaxed!” joke. 
 
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The day of the surgery finally arrived. The hallways were dim, the ceilings were low, and my chart was in a binder instead of on a computer. The first thing I got after I was admitted was a neon bracelet with bold letters saying, “Allergic to opiates.” This was a rather imperative bracelet for the nurses, because if any opiates enter my body I go into anaphylactic shock, i.e., blockage of airway, can’t breathe, death. 
 
The next step was a blood sample. The nurse didn’t quite know what she was doing and my arm was soon sitting in a pool of blood. It’s fine, I kept thinking internally. And then she opened a few of those tiny antiseptic squares and tried to start mopping up the ever-growing pile of blood with three of those. And that’s when my mom went a little crazy. After that incident, the anesthesiologist came in to explain the next step. 
 
“I’m going to put you out. You’ll have to be on your stomach for the operation and we need your head secure. So we’re going to drill six screws into your skull to keep you stable. If you feel any blood there after you wake up, that’s what it’ll be from.”
 
Now, I don’t know about you, but that doesn’t seem like necessary information! I’m going to be asleep. I don’t want you to tell me that I’m going to be Frankenstein’s next model, thank you very much. Honestly, at that point I was more terrified of the skull screws than the fact that a scalpel would soon be making its home in my brain. 
 
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After many sweet goodbyes with my family, they wheeled me off.
 
“Count backward from ten,” the anesthesiologist said. I only got to seven. The next thing I remembered, as you might imagine, was waking up in excruciating pain. I was muddled, confused, and overly emotional -- thank you morphine. After two days, I was finally coherent. And I use that word in the loosest sense.
 
They moved me to another room, my mom went to get flowers, and my grandparents were visiting. I was in a lot of pain and a nurse kept coming in and saying, “If you’d just let me give you some Codeine, it’ll really help.” I told her about five times, “No, I’m allergic to opiates.” The next time she asked I just held up my wrist so she could see the bracelet. We didn’t get along so well, her and I.
 
Clearly, she didn’t believe my charts, my wrist, or me. Because when my dad was busy talking to my grandparents, she came in and injected a syringe into my IV saying, “I’m just going to give you some Benadryl.” Of course, five seconds later I was gasping for air. I don’t remember much after that, but from what I’m told by the spectators, it wasn’t pretty. They injected me with real Benadryl, pumped in an inhaler into my gaping mouth, and waited to see if they’d need to give me an epinephrine pen. When my dad asked to see the syringe she injected me with, she said she had, “already thrown it away.” Convenient. 
 
Well, after five days I finally got to go home. And the best part? That surgery was the catalyst for my long time crush to realize how he felt about me. He stayed with me during my recovery and took care of me once I was home. We started dating only a month later -– and now? We’ve been married for almost three years and have a nine-month-old daughter, which would have been impossible before the surgery. I’m healed and happy and couldn’t ask for more.

It is possible for a horror to be turned into a blessing, for strength to come from weakness. I know this is cliché, and though it may not seem like it, there really is always a silver lining. You may not see it at the time; you may be doped up on morphine like I was, but in time it will reveal itself. And you’ll be better for the trial, the waiting, and the fear.