Living With Chiari Malformation: Part V
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Health and Wellness

Living With Chiari Malformation: Part V

Would a trip to New York be the answer?

Living With Chiari Malformation: Part V
Britni Smith

In three weeks, an ambulance was called four times. 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 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 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 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.

To Be Continued...

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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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