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I'm a firm believer in whatever doesn't kill you simply makes you stronger. I'm only 18 years old, yet I've struggled through an experience that few have ever had to face.
In June of 2008, I was diagnosed with a severe case of Chiari Malformation. My brain was literally too big for my head; it was descending into my spinal canal. This caused a syrinx and a buildup of spinal fluid along my back, which resulted in major headaches and dizziness. I would get pain in my head whenever I stood up, sat down, laughed, coughed, sneezed' basically every time I moved. Although it was something I was born with, it was never diagnosed because I never told anyone about my symptoms. Since I was never the type of person to complain, I just kept struggling through the constant headaches and periodic dizziness.
When I turned 18, the dizziness became unbearably worse. It wasn't long before I became dizzy with every activity I did. With no more options left, I was forced to do the one thing I hate more than anything in the world' I had to complain. I talked to my parents about what was going on and they suggested I see a doctor.
After a visit with the doctor and a few MRI's later, I was informed I had a serious brain malformation and would need immediate surgery. The neurosurgeon I spoke with at Dartmouth-Hitchcock Center in New Hampshire informed me that a Chiari Malformation is considered severe if it's just 5mm into the spinal canal. She then told me that mine was 27.1mm. It turns out if I had ever received a fairly significant hit on the back of the head I would have been paralyzed, or I would have died. Considering I've been doing martial arts for twelve years and was on the wrestling team in high school, I find myself to be a very lucky person.
After the trip to Dartmouth-Hitchcock, my family and I traveled to Boston Children's Hospital for a second opinion. After the neurosurgeon, Dr. Michael Scott, ran a few tests, he discovered that the left side of my body was slowly deteriorating and gradually becoming paralyzed. If I didn't act soon my condition would soon become much worse. Since the effects of the paralysis were irreversible even after the surgery, the longer I waited, the worse I would be in the future. Because my family and I felt more comfortable with Dr. Scott, we decided to have the surgery at Boston Children's Hospital. He would be the one to change my life forever.
The anticipation of the surgery never left my mind. It was a rough two weeks leading up to the major event. I tried to distract myself, but my efforts were to no avail. It also didn't help that Dr. Scott told me there was a chance I could be paralyzed after the operation. However, these two weeks would be nothing compared to the pain I would go through immediately following the surgery.
Before I knew it, the day of the surgery had arrived. It seemed like it was no time at all before I was in the surgery prep room. As I was counting down the last few minutes before the operation, two clowns with a ukulele seemed to appear out of nowhere' I'm not joking. My first thought was that I was already under anesthesia and I was hallucinating; however, I was still fully awake. It turned out that since it was a children's hospital, they hired clowns to distract the kids from their surgery. My second thought was' aren't children afraid of clowns? As the clowns started singing a song for me, a third thought popped into my head: 'Wow... Can I have the surgery now so I don't have to listen to these stupid clowns anymore?'
As the clowns finished their song and made their exit, the doctors entered the room. That's when the reality of the situation really sank in. I remember at that point I became so nervous I suddenly became very cold and started shaking uncontrollably. The doctors needed to drown me with blankets and restrain me in order to calm my body down. After I stopped shaking, they attempted to put the IV in. The plan was to give me the anesthesia then so I wouldn't have to remember going into the operating room. However, because I was so nervous and cold, they couldn't find a vein for the IV. I was forced to go into the operating room fully awake.
As the doctors wheeled me away, I said a last goodbye to my family and was escorted into the operating room. On the way there, I remember clenching the sides of the bed as hard as I could, hoping to relieve some of my nerves' but it only seemed to make them worse. When they wheeled me through the door of the operating room, I tried desperately to keep my eyes closed. I tried my hardest to fight the temptation to open them and examine the room where they would be cutting my head open. Unfortunately, I couldn't resist the temptation. My eyes opened and I saw all the equipment they would be using. Although I didn't know it yet, the following moments in this room would scar me for the rest of my life.
After dry heaving to the side by breathing in some putrid gas they strapped over my mouth, my body soon went into a paralyzed state. I couldn't move or even open my eyes. However, I was still fully conscious; I could still hear and comprehend everything going on around me. I assumed this was normal and that I would be going to sleep in no time' but that time never seemed to come. Seconds turned to minutes, and I was still awake. The next few words I heard would trouble me still, even years later. A female doctor, who by the sound of her voice, appeared to be on the other side of the room, yelled, 'Is he out yet?' A male doctor, who seemed to be standing right next to me, after a brief pause replied 'Yup.' As my body lied there motionless and paralyzed, I tried desperately to move or do something to get their attention and show them that I was not 'out' yet. But no matter how hard I tried, I couldn't talk or move. I could feel the doctors moving my body onto something else; whether it was the operating table or another stretcher, I don't know. While I was on this new location, I could still hear people moving around. The thought of me having to go through the entire operation fully aware of what was happening' is a thought that still haunts me today. Thankfully though, I was able to fall asleep before the doctors proceeded any further. Although this nightmare seemed to subside for the moment, it continued the second I woke up.
It turns out the surgery didn't go as well as they had hoped; there were some complications during the procedure. Because my malformation was so bad, the left tonsil of my cerebellum was swollen. Dr. Scott said this was the first time he had seen this problem in 38 years. Another problem was that my vertebrate was unexpectedly fused to my skull. A third problem was that I lost more blood than I was supposed to while they were operating on me. These three problems made the recovery time much more painful.
My memories of waking up are very faint. I woke up in a room with many unfamiliar faces in it. That's the only thing my brain could comprehend at the time; I was in too much pain to register anything else. I also kept drifting in and out of consciousness, either due to the medication, pain, or both. It turns out I was in the Intensive Care Unit of Boston Children's Hospital due to the critical condition I was in.
Eventually I woke up and found myself in another room. Because I was more aware of my surroundings this time, I was able to figure out that this was the place where I would be staying for the next five days. This newfound awareness, however, came with a price. Since I was more aware of my surroundings, I was more aware of the pain I was in. I was also aware of another thing' my lip was five times the size it should be. It was touching my nose! It turns out that during the surgery, my lip had been squished against a tube and had become extremely swollen. This swollenness caused me to have trouble breathing. This constant choking made my pain even worse. Every time I would fall asleep, I would suddenly wake up because I stopped breathing.
I don't remember much of what happened next. All I remember is that I needed a CAT scan because of my breathing difficulties. My next memory is of a few people placing me down on this contraption. And while they were doing this, I felt the sharpest and worst pain I had ever felt in my entire life. It felt like someone was holding a blowtorch on the back of my neck. A few weeks after the surgery, my mother told me that during the CAT scan, the people who were placing me down let go of my head, which they weren't supposed to do. It was at that point that I let out what my mom referred to as, 'a blood curdling scream.'
The following memories I have after the CAT scan are of me trying to fall asleep. I never knew sleep could be so painful. During the operation, the surgeon put screws on the left and right sides of my head to hold it in place. Because of this, there wasn't a comfortable position for me to sleep in. I felt intense pain on the back of my head and neck due to the incision, and on the right and left sides of my head due to the screws. My only option was to struggle through the pain. I remember sleeping on my left side, trying my hardest not to move a muscle for fear of an onset of even more pain.
Because I was on so much medication, my system was backed up and I wasn't able to go to the bathroom, which brought on intense nausea. I remember sometimes waking up and dry heaving, which caused me to have even more of a headache. Then the headache would encourage the nausea, and it was just a vicious cycle from there. However, two laxatives, a suppository, plus another unfortunate event that I won't go into detail about, and five days later, I finally made a breakthrough and was able to go to the bathroom. This was a major step forward in the recovery process.
I would definitely not consider myself a weak person. I've been doing martial arts for twelve years, and I'm in good physical shape. In high school, I was known as a really strong guy who could take a lot of pain. But during the five days I spent in the hospital, I was screaming and crying for what seemed like an eternity. I remember during one of the days, I overheard the doctors telling my parents how this surgery is the most painful operation anyone could have.
I can't even begin to describe all of the effects the surgery has had on my life. After struggling through an 18 year long headache, I finally know what it feels like to live normally. Because of this, I have a newfound appreciation for myself as well as the world around me. It feels as though I'm beginning a new life' and I couldn't be happier.
Lake Elsinore, CA