Living With Chiari Malformation: Part VI
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Health and Wellness

Living With Chiari Malformation: Part VI

The third time's a charm.

Living With Chiari Malformation: Part VI
Britni Smith

“This surgery requires us to detach your head from your body. Because that tendon is missing, this procedure will be more dangerous than usual.” As those words came out of my doctor’s mouth, chills ran through my body from head to toe. My mom started crying behind me, and my dad said “No. Let’s go home.” Dr. Rekate reassured my parents that every patient has come out of this surgery feeling better than before. I understood that the procedure would have risks, but what I couldn’t risk was being in pain for the rest of my life. I just wanted to feel better. I was ready.

The week went by in a blur. On Tuesday, we met the two people who were staying with us in the Variety House. The first, a man whose daughter was in the hospital across the street. The second, a younger man, Tyler, whose aunt was going to have her 20th brain surgery later in the week. Then, we somehow managed to cop tickets to Jimmy Fallon’s Tonight Show monologue rehearsal on Wednesday. Thanksgiving was the next day, so Jimmy rehearsed his lines for his shows on Wednesday, Thanksgiving Day, and Black Friday. His humor was exactly what my family needed that week. He lifted our spirits and took our minds off of the dangerous surgery that would be performed in just two days.

The next morning my family and I woke up at 4 a.m. and boarded the Manhasset train for New York City. Tyler joined us as we made our way to the Macy’s Thanksgiving Day Parade. Thousands of people stood lining the road before we arrived at 6 am. We found a nice spot just a few feet away from where the parade would pass. Temperatures below freezing along with snow flurries plagued us the entire morning. My parents and I made several friends while waiting for the parade to pass us by. We even shared stories, and my surgery (which would happen in 24 hours) was brought up when someone asked what brought us to New York. Parade bystanders were not allowed to sit, but as the morning wore on a headache decided to harass me. I sat on my dad’s feet and peeked out at the different floats through the legs that were in front of me. The friends that we had made offered me their blankets, hats, and scarves. The kindness we met in the Big Apple was unreal.

I hardly got any sleep that night. My nerves overwhelmed me. A million thoughts flew through my mind. A million different things that could go wrong. But something else happened that. And the best way I’ve found to describe it is by quoting a song by Chris Tomlin: “I’ve heard the tender whisper of love in the dead of night.” In the midst of all of my worrying and fear, I felt an overwhelming peace surge into my entire being and take everything else away. All of the negativity vanished in an instant, and it was then that I knew for sure everything was going to turn out okay.

We arrived at the hospital early the morning of my third brain surgery: five thirty. Way too early for IVs and twenty questions, but I knew the system like the back of my hand. Dr. Rekate entered my room and told me that, if I accepted, I could be the very first test patient for his research study on Chiari Malformation surgeries. The study is called “Finding Biomarkers for Chiari I Malformation Utilizing Metabolomics”. Duh. Of course I accept. I mean how cool is that?

After Dr. Rekate left the room, the anesthesiologist entered and injected me with some happy juice. The next thing I remember is opening my eyes in a dark room to see my parents standing over me. To me, surgery only took a second. Everyone else had been waiting on me to exit the operating room for 10 hours. The first two hours were spent detaching and stabilizing my head in order to ensure the safety of the surgery.

The pain after this third surgery was immense. The surgical staff removed scar tissue, placed my cerebral tonsils into my skull, repositioned my head, and screwed it into place with two titanium rods and six screws. A Jackson-Pratt drain was placed in the back of my neck in order to drain the fluid from my surgical incision and keep my brain from swelling. They moved me to a room, and Tyler’s aunt was my roommate. She is an incredible woman who has a story that I’m not worthy of writing.

Several days went by. Sunday night the hospital’s fire alarm sounded. And On Tuesday, the older gentleman whose daughter was in the same hospital stopped by my room. I was sound asleep, but he asked my dad if they could pray for me. My dad tells me that chills ran through his entire body as they were praying. Early on Wednesday morning, five days after my surgery, disaster struck. My blood pressure bottomed out, which meant I couldn’t have any medicine for my pain. To make matters worse, I transported downstairs and across bumpy tile floor to get an MRI. All without pain medicine. I have never in my life been in so much agony and distress. Tears flooded from my eyes for hours and hours. As I returned to my room, I decided to sit in the chair and eat around four in the afternoon. The pain made moving almost impossible, but I slowly managed to eat a few bites.

A nurse brought me some steroids in hopes of relieving my pain. I gulped them down and took an hour nap. A miracle happened when I woke up. All of my pain disappeared completely. The pain that had been tormenting me for 12 hours was entirely gone. I made a day and night transformation in a matter of an hour. After an overall incredible series of miraculous events, Dr. Rekate released me from the hospital that night.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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