Conquer Chiari Britni's Newsletter

My Journey

In three weeks, an ambulance was called four times, and my surgeon refused to see me. My mother found the Chiari Institute in Great Neck, New York. She sent my MRIs to them, and we received a call the very next day: “Mrs. Smith, I don’t want to alarm you, but Britni’s condition is critical. It is important that we schedule an appointment as soon as possible.” The caller continued, “Due to the distance, I’m sure that you want us to schedule the consultation and surgery for the same week.” My mother burst into tears. She knew that something was still wrong with me. Even though countless people, including doctors had told us that I was faking it, or that it was all in my head. She knew that the pain was real. No one else could understand it.

Mom told me the news and mixed emotions flooded my mind. Shock—because someone finally knew how to help me. Joy—because I realized that all those people were wrong. It wasn’t just in my head. After years of people telling you something, even if you know they’re wrong, you still start to believe it. Anxiety—The Chiari Institute said that I was in critical condition. I had to have a third brain and neck surgery.

The "Zipperhead" Chiari Awareness ribbon

The next available appointment was at the end of November, a month and a half down the road. My incredible community pulled together and raised a breathtaking $15,000 that went toward surgery expenses. I will never be able to express just how thankful I am for their compassion and gracious contributions. My parents and I boarded a plane for New York the Sunday before Thanksgiving. A taxi drove us from JFK International Airport to The Variety House which sat directly across from North Shore University Hospital where my surgery would take place later in the week. A taxi took the three of us to the Chiari Institute on Monday morning, and that’s when we realized how serious my condition actually was.

Dr. Harold Rekate, a man closely resembling Albert Einstein, walked into the room and instantly stood in disbelief: “You’re Britni Smith?” I sat on the patient bed, legs dangling, small grin on my face. “Yes sir,” I replied. It had been a decent morning pain-wise. The neurosurgeon left the room and reentered a few minutes later. He began to shoot out a series of questions regarding my symptoms and lifestyle. I answered all of them accordingly, and Dr. Rekate’s face grew more puzzled with every answer. Frustrated, he walked out of the room again. When he returned he asked again, “You are Britni Smith from Berryville, Arkansas?” “Yes sir,” I affirmed nervously. “Okay,” he began, “I just have to show you all why I am so confused right now. Follow me.”

He led us to the film room, where he pulled up the MRI that we had sent them in September along with an MRI of a “Chiari-less” person. “The reason that I’m so concerned is that due to the findings of your MRI,” Dr. Rekate started, “you should not be sitting upright, laughing, and holding a conversation with me. I expected to see a young woman in a great deal of pain, sitting in a wheelchair.”

Dad told him “She’s one of the toughest kids I know,” and Dr. Rekate answered, “Yes. She has to be. I’ve never seen anything like it.” He began to explain the MRI and all of its technicalities. He asked me how many times had I been told to “sit up straight or quit slouching”. I immediately looked at dad because I had heard those exact words from him and Brock my entire life. My MRI showed that my head was positioned at a downward angle, so naturally, I looked at the ground. This positioning aided in cutting off the spinal fluid to my brain. The MRI also showed that my cerebral tonsils had dropped back down into my neck. Dr. Rekate let my family and I know that both surgeries in Little Rock were complete failures. He went on to say that the result of the first surgery would actually make their procedure more difficult.

Dr. Rekate let us know that the tendon that Little Rock removed served as a stabilizer. It helped a single ligament hold my head and neck on my shoulders. “This surgery will require 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 previous 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.

My scar 2 weeks post-surgery

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.

Macy's Thanksgiving Day Parade, New York City, NY, November 2014

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.

Dr. Harold Rekate, Chiari Institute, Great Neck, NY

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. False alarm, luckily. 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.

An MRI of my skull fused to my cervical spine with titanium rods and screws

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 had to be transported downstairs and across the 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 around four in the afternoon, I decided to sit in the chair and eat. 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 the very next day.

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