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Sequoia Kriss

Hello, my name is Sequoia Kriss. I am 17 years old and I had Juvenile Idiopathic Scoliosis. 

 It was the summer going into my 6th grade year in elementary school. My sister, Sierra, and I were being silly and dancing to made up music in our heads. As she spun me around for a dip, the back of my shirt lifted. Sierra was confused because she saw that my back had a curve. She had me stand up, lift my shirt and bend over. She touched my back and gasped as she could see and feel my spine curve. I told her to stop worrying and continue to dance with me, but she called my parents upstairs and they examined me. The concern in their voice took me from a state of laughter to tears. I was scared that my life would change from that moment on, and it did. 

            Many doctors’ appointments and referrals later, I was finally sent to Dr. Scott David Shoemaker. His warm welcome calmed me as I walked into the doctor’s office and stood in line to get my x-rays taken. The x-rays soon showed that I have an “S” curve with 25 degrees on the top curve and 27 degrees on the bottom curve. He sent me to a specialist to get a back brace to hopefully halt the continuation of my curvature.

Another three appointments, and I was given my pink back brace that was to be worn when I went to bed every night. The first night I was excited because this would fix and change my back instantly, or so I thought. The first night was horrible and the nights afterwards were horrible too. My small 100-pound body in a hard-shelled back brace was half my size and refrained me from sleeping on my side or stomach. Every night, strapping into my brace, Velcro strips ripping off and attaching made tears fall from my face. My dad would have to help me up off the floor and would make a joke that would help me laugh and fall asleep.

Months later, we went back to Dr. Shoemaker and took more x-rays taken. I crossed my fingers for no more movement of my spine. It wasn’t the case, my back increased to pass 30 degrees on each curve. I felt devastated, the pain and humility that I went through every night was not doing anything to help me. I felt defeated. I was pushing through the pain because I assumed it was working and helping me, but it wasn’t. Dr. Shoemaker made my parents and me aware that if my back continued at the rate it was going, I would have to have surgery. He told me begin to work on my core and strength, in case I would have to get surgery. He explained that I would need to be strong and flexible for surgery.

I continued to wear my brace every night, but the days got worse as my back continued to curve. I would get painful headaches and back pain every day at school. My mom would bring me home and I would sit on the floor crying with an ice pack on my back while my friends were having fun on the playground. I would layer my clothes before I went to school to attempt to conceal the hump, I had on the bottom left of my back. I went to a personal trainer at the YMCA twice a week to increase my strength and flexibility. 

The final appointment: The x-rays showed that my back was increasing to over 60-degree curvature. Dr, Shoemaker explained that I would have to get surgery in order to stop the development of my back. If I did not, my back would continue to curve until I would be hunched over and there was a chance that my lungs would collapse. He explained that I would have surgery in the following months to come. 

It was March 31, 2015. We arrived at the hospital at 4 in the morning. I changed into a gown, socks, and a hair net. They pulled me into the operating room and the 7 doctors were all surrounding me and reassuring me that I would be okay. 8 hours later, I woke up with two titanium rods and 22 pins later and remained in the hospital for 6 days after that. I remember very little from the hospital experience. At home I lay in bed all day and eventually was able to walk down the stairs into the living room, which would be the farthest I traveled for the next 3 months. 

Three years later: After this life changing experience I had to learn how to maneuver with metal in my back. It was a painful first year because I was unable to run, and the pain moved from deep pain to uncomfortable pain occasionally. Regardless, once I entered high school, I joined the cross-country team. I ended the season placing 6th in the Junior Varsity league race and the following year I placed 6th place in the Varsity league race and 2nd in the two-mile league race during track and field. The start of running effected my back, it would hurt when I would begin my run. However, now going onto my 4th year of running, I have noticed that running has helped my back. It has kept be flexible and strong. My back, if anything, helps me run because it keeps me up straight and moving forward strong. My past year of running, my Junior year, I placed 5th in the league race and placed in the top 20 at the C.I.F San Diego sectional race in November. Alongside the happiness running gives me, I try my hardest to help others who have scoliosis. I sent advice to a young boy who was going to be having surgery. I also texted, and still text, a young girl who went through surgery and is now building up her strength to begin horse riding again. I love helping these young kids because I know how confusing, painful, and alone you can feel when you get told that you are not “normal.” 

I would love to connect with anyone who wants a friend to talk to and ask questions about scoliosis too or to have someone to support them. Please direct message me on Instagram (@sequoiarosie) to talk:) Scoliosis may sound scary, but all it has done for me is make me a stronger person.

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Kristina Pishulin

My name is Kristina and I have been dancing ballet and contemporary since I was 3 years old. I had scoliosis with a curve of 51 degrees and it was corrected to 22 with VBT surgery…my pain is eliminated, I feel confident, and most of all, I maintained my flexibility to help with the activity I can’t live without. I actually feel more balance doing my turns!! I am so so happy I got this surgery because it made my life much much better. I am now 5 months post-op and feeling better than ever and dancing with no limitations! It was the best decision of my life.

 

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Katarina Harvey

My name is Katarina Harvey. I was about 11 years old when I first heard the word “scoliosis” and that I had been diagnosed with it.  Being a 11-year-old, I was clueless about what scoliosis was and how it was going to change my life.  Prior to being diagnosed, I remember my clothes not fitting right. My shirts would be slanted off my shoulders or my skirts just didn’t sit right on my hips. I thought to myself, that I looked like a mess. My mother would often adjust my clothing on my body, also noticing that something wasn’t quite right.  It wasn’t until I started to have sharp pains often in my chest cavity every time, I took a breath, that I had to meet with my pediatrician. It took a second visit to the pediatrician to determine that in fact that I had scoliosis and that my spinal curvature was affecting the way I was breathing. 

My curvature was being monitored quite often and was later determined that I needed to wear a back brace. I must say that my back brace was my worst enemy. I did not just wear my brace one year, but it turned into 3 years. It was three years wearing it practically 23 hours a day for 3 years. Every time I would bend over my brace would stick out and people would question my appearance, 3 years of sleeping in discomfort, 3 years of people wondering what was on my back as they felt this odd thing when they hugged me. I no longer wanted to wear this brace for a fourth year. So, I decided to take it off during one hot summer and just like that, my curvature went for the worse thus requiring spinal surgery. I was relieved to hear this news. No more brace equaled freedom! Surgery was the best thing that ever happened to me.  Of course, my parents have questions and concerns as any parent would. My surgeon was truly awesome, attentive, and empathetic.  In fact, I currently work at the same hospital as my surgeon as a pediatric nurse and have run into her a couple of times. 

The recovery was terrible to say the least, but here I am 15 years later, living a normal life. You may wonder how getting surgery may affect your life. I was able to do the things that I love after recovering. I was able to participate in sports, work out at the gym, travel internationally, and fulfill my career as pediatric nurse. Trust me when I say that I was scared and concerned when I heard I was diagnosed with scoliosis, but I was fortunate to have a supportive family and health professionals that took great care of me.  I am left with a scar on my back, but I must say that I love it. It tells my story and testimony, which in turn your scar will be yours as well. 

I would like you to know nothing in life is easy, but with resilience and a can-do attitude; obstacles living with scoliosis can be overcome.  Trust me, I am thriving!

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Izzy Marzano

Hi my name is Izzy Marzano.  I live in San Diego, CA and I’m 14 years old.  Three and a half years ago, at my annual school physical, my doctor noticed I had a curve in my spine when I bent over. She told my Mom that I may have a curve in my back and I should go to see a spine doctor.  She referred me to Rady Children’s Hospital where I met with Peter Newton, MD.  He is a Pediatric Spine Surgeon.  When I arrived the nurse had me take XRays of my back so Dr Newton could see my bones and understand what was happening.  When we went into the exam office, he sat my mom and me down and told us the images showed I had two curves in my back.  One in the upper spine or thoracic spine and one in the lower spine the thoracolumbar part of the spine.  He told me I had adolescent idiopathic scoliosis or AIS and a double curve of my spine.  As you can imagine, upon hearing this my mom and I felt a number of emotions.  We were surprised, scared, nervous . . . and had a number of questions like: How big were the curves?  Were they bad? Did I need surgery?  There was a lot running through our minds because this was all new to us.  There were a lot of unknowns.

            In continuing the conversation with Dr. Newton he described the degree of my curves as 20deg thoracic and 40deg thoracolumbar.  He shared the curves weren’t huge, but they were big enough where intervention was required because I still had a lot of growing to do.  He said I had two options.  The first was bracing my spine.  We asked what he meant by bracing?  He said I could have a customized plastic harness or girdle made.  It would start under my arms pits, go down to my hips, and wrap around my body.  It would have 3 straps to pull it tight to help prevent my spine from further curving.  He also said I would have to wear it for up to 18 hours for a day for a couple years.  The second option was fusion surgery.  He could place screws and rods in my back to help straighten my spine and fuse the bones together.  The surgery would take a few hours and I would have to spend a couple weeks at home recovering.  With either choice he told me I could still stay active and participate in sports. 

            When I heard the options, I thought avoiding surgery was the better choice, so I chose bracing.  But wearing a brace every day wasn’t something I was looking forward to.  I had questions like: How do I wear a brace at school?  How would my clothes fit? What would kids at school say if they saw it?  I had a lot of questions!  We talked about a number of things and before I know it, I had my brace.  It took some time, but I finally got used to wearing the brace.  I wore it during the day and while sleeping with a few hours off in the afternoon.  I bought some looser fitting shirts to help hide it under my clothes, but even when kids as school saw it, they were cool with it.  I just told them I had scoliosis and I had to wear the brace to help fix my spine.  It ended up not being as big a deal as I had thought.

Fast forward three years, a lot of bracing and reminders from my parents about putting my brace on, and I am a happy to share bracing worked!  I am now fully grown and my curves are now 20deg thoracic and 22deg thoracolumbar.  While my spine isn’t perfectly straight, through bracing I was able to avoid surgery.  I am sharing my story because like you, I started this journey being nervous.  But working together with Dr Newton and my parents, I was able to avoid surgery.  Today, I participate in Setting Scoliosis Straight to help kids like me to understand what being diagnosed with AIS means and how they can use bracing to help treat their curves.  I hope you found my story helpful. 

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