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Emme Neumann

Life with Scoliosis

For an hour my mom and I sat in the car just crying until we had no more tears left. Just an ordinary day for everyone else but for me it felt like the end of the world. After a two hour appointment with a back specialist we had found out I had a bad case of scoliosis. Forty five degrees at that time but it was getting worse day by day.

 My dad decided to do research and found out that the best doctor in the nation was in San Diego. Now every four or six months my family and I fly down for the day to go to my appointments.

The first doctor we saw here in Las Vegas went straight to surgery, but we decided to look further into what else we could do. I have been dancing since I was two so when I went to the first doctor and he told me I had scoliosis and would have to get my spine fused together, I was devastated. My current doctors name is Peter Newton and has been treating me since the summer before eighth grade, now I am entering my senior year. He encouraged me to keep dancing and told me that I could continue all my normal activities unless they put me in pain. He understood how horrible it felt when I found out I had scoliosis and comforted me by telling me that I still had options to deal with it. Many people study my X-rays and look at my spine to find the best treatment for me or how they can handle it correctly. That is because at the hospital I am a case study and every time I visit; they find new problems or different fixes that include my back. Scoliosis has to do with your spine and how it curves. This spinal problem causes the spine to curve unnatural ways and because of that our body tries to compensate the unevenness. So, our rips shift and our hips become uneven. Therefore, most people with scoliosis have a rib sticking out more than another. This is also why people sometimes have one shoulder higher than another.

There are three different types of scoliosis, muscular, bone, and idiopathic. I have idiopathic scoliosis; it is a deformity of the spine and nobody knows what caused it to curve. Many people suggest that it is a metabolism deficiency, a high platelet calcium modulated protein level, a muscle disorder, or something else. This type of scoliosis can be hard to treat in some cases but there are usually only 3 things that we know to do. People with small curves can let it run its course. Others with a spine curvature less than 50º but still higher than normal can wear a brace that should stop the curve from progressing but not fix it. Lastly, if the spine gets worse while still in a brace or if you discover your scoliosis when it has already reached this point of 50º, you would have to get surgery to fix the curve. In my case, I got a brace when we first started with Dr. Newton. My spine curvature started at 48º and it went down 3º in 12 months but at my appointment in July of 2018, it jumped up to 52º.

 

In December of 2018, my family and I had to discuss the idea of surgery with my Dr. because my pain had increased tremendously. This specific surgery is called a spinal fusion because that part of your spine is no longer flexible. Dr. Newton and my family set a date for June 5th and we started preparing. I would get two rods and twenty screws that ran from T3 to T12, bolted into my spine to straighten it. This fixed the curve, but it would never return to zero degrees again. Surgery has always been a when will I get it and not an if I get it. I had my brace since October 4, 2016. So, for about 3 years I was waking up, going to school, and going to bed in my brace. Once I stopped growing my doctor told me that I no longer had to wear it during the day.

There are more than 3 million people affected with scoliosis per year and it’s horrible to think that they may have to go to a school where they don’t feel comfortable or fit in. But even though I go to a school that doesn’t judge or care about that, some people that don’t know me felt weird around me because they don’t know what I had. Sometimes people would see my brace and ask if I was ok or how I was. But when someone asks, how you are, they really don’t want an answer, they just want to be polite. I understood that not everybody wants a whole explanation of what I have and sometimes all they want is a simple reply. In the beginning I felt really uncomfortable but around the second week of my eighth-grade year, people stopped asking questions and just treated me normally. When you get diagnosed with scoliosis, you might become self-conscious in the beginning. I would try and hide my brace but after a while I started not caring and it boosted my self-esteem.

Not many people look at their lives and just think how great they have it. They take everything for granted. I thought I would lose dance for that time being and that just shocked me and I forgot about everybody else and everything else except what I could lose. People don’t understand that everyday life is taken for granted. Yes, life carries on, but some people have it way harder and struggle more than we could imagine. Some people can hide their pain away easily and you won’t even know. We are a community and there are always people here to help and talk to if you need support.

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Alyssa Edwards

How Perspective Changes a Thunderstorm

I used to be afraid of thunderstorms. The loud, unsettling noises and bright flashes terrified my three-year-old self. Then, one stormy night, my dad took me by the hand and started walking towards the door. I reluctantly followed. We sat in front of the glass door watching the lightning strike and listening to the thunder that quickly followed. I was mesmerized by what had once scared me, and surely enough, they became one of my favorite things. I genuinely looked forward to thunderstorms. Just one night changed my perspective on thunderstorms, and likewise, one experience can change your perspective on life.

I stood in front of the mirror, gazing at the body I saw standing before me. I ran my fingers along my spine as it curved from one side of my body to the other. I pushed against my ribs, judging the disproportionate points that caused one rib to stick out farther than the other. At 13 years old, the self-judgement became a habitual routine. I loathed the disorder that caused my body to look and feel so abnormal. I loathed the nights spent crying because the muscle pain in my back and hips was too intense. I loathed the countless amount of doctors’ appointments and the constant feeling of being let down by my own body. Suddenly, I was three years old again and my scoliosis seemed like the thunderstorm I was once so afraid of.

I was just ten years old when I was diagnosed with adolescent idiopathic scoliosis. At this point, my curves had just barely met the standards to be considered scoliosis and so for the next few years, my scoliosis was not monitored. Fast forward to eighth grade, my scoliosis had rapidly progressed and was diagnosed as severe.

Numerous specialists reviewed my case, but the outcome was always the same: improvements from bracing were not hopeful, and surgery would be my only option. Every time I heard those words a bit of hope was stolen from me. I wrestled with the idea of surgery for months. I was fighting a battle against my own body and I felt defeated. The storm I was facing had barely started, and I felt as though I had already succumbed to my fears. But I knew I still had a long road ahead of me and continuing on with this outlook would only strengthen the unsettling feeling of defeat. It was because of this realization that I kept pushing through, praying and hoping the storm would soon end. On June 23, 2017, Dr. Baron Lonner performed the VBT procedure, tethering my T-11 to L-3. I changed in two ways on this day: the first being I now had a 6-inch scar running down my side and five screws imbedded in my vertebral column, and the second being I had a new perspective on my life. On June 23, 2017, I opened my eyes to look for the good in bad situations.

I am still fighting my scoliosis, but I am no longer afraid of it. Similar to how the stormy night spent with my dad changed my outlook on storms, I have chosen to overlook my fears and apply a new perspective to my scoliosis. It was because of my scoliosis that I learned the key to living the fullest life I possibly could was accepting the good with the bad. My pain and fear have taught me something comfort never could. Since my surgery in June, my thoracic curve has continued to progress, and my tether has broken. Due to these unforeseen circumstances, I will undergo a thoracic fusion in the near future, along with a VBT correction in my lumbar spine. It is unknown what my future will hold, but I have grown to learn that my storm is a blessing enriched with many lessons and growth opportunities. My scoliosis has impacted my life for the better, and has led me to become the person I am today.

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