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Patient Stories

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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Kaitlyn Boyle

Hi! I’m Kaitlyn

I was diagnosed with scoliosis at the age of 9 at a pediatrician well visit.  The doctor found that I had a lumbar curve in the high 20’s as well as a thoracic curve in the low 20’s.  I immediately began wearing a Providence brace at night.  At first it was a fight, but once I got more comfortable with it I was very compliant in wearing it to bed without too much fuss.  We visited the orthopedic doctor every four months and were continually told that “everything looked good”, so we felt confident that I was going to get through this without much worry.

Fast forward two years. I started complaining that my brace hurt and I didn’t want to wear it.  I had been wearing the same brace the whole time so we made an appointment earlier than planned to see about a new brace.  I was shocked when the doctor told me that my curve was now 41 on the top and had actually been getting worse over the last year! We decided to switch to a Boston brace so that it could better address my high curve, but I would have to wear it pretty much full time.

I wore the brace to school once and came back refusing to ever endure that again.  I said I couldn’t even go to the bathroom without help and I was NOT going to do this!  We watched videos online of girls showing how to do cute outfits and we did a ton of shopping hoping to find ways to make this acceptable to me, but I was quickly pulling away from social activities and friends and changing from the happy energetic girl that I was once was. I worried I was going to have to give up volleyball, a sport I loved, and I refused to spend the night with friends or participate in activities because I was embarrassed about my shoulder blade sticking out.  

My mom spent hours pouring over the internet and ruling out several of my options, we decided to visit Shriners in Philadelphia to talk to Dr. Cahill about VBT.  He felt I was a perfect candidate and we jumped in head first without looking back.  My thoracic curve was at 46 degrees on the day of surgery and lumbar was still in the high 20’s as it had always been.  Dr. Cahill tethered the top of my spine and left the bottom alone. Six weeks later I was back playing volleyball.

Since then, my life has been a series of amazing events that I think all would have never happened if I’d stuck fighting the brace! I won a Disney essay contest with a story I wrote about my VBT experience and won premium annual Disney passes for the family for a year.  I had an opportunity to speak in Washington DC at the FDA spinal devices meeting about my outcome and experience with VBT.

I made my club’s national volleyball team and at the national tournament, I was scouted by an agent for a major modeling agency and I have been modeling for the last four years. I also write a monthly column for a modeling magazine.

I went from 5’4 on the day or surgery to 5’11 now, five years later and my spine is almost completely straight! It has been inspired me to want to become a doctor. I have been working hard to graduate from high school a year early.  I have been admitted to the University of Central Florida for the fall, skipping my senior year in high school.  I hope to become a radiologist.

My life is so much different today than what I feared it would be five or six years ago.  I had visions of a lifelong deformity and pain.  Instead I have experienced humbling support from friends and family and unbelievable gifts of opportunity that would have never been presented to me if I had chosen a different path.  We are ever grateful for the surgeons who have the passion and vision to offer something new and better for their patients. 

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Meaghan Duggan

Hello friend, 

You have just found out that you have scoliosis.  I know what this is like; I was diagnosed with major advanced double curve idiopathic scoliosis when I was 14 years old.  My Doctor told me at my second appointment, “If your parents don’t brace you immediately, I will most likely refer you to Johns Hopkins for surgery at our next appointment.” His words were not good news for me, just like I imagine your scoliosis diagnosis is not good news to you.  

Scoliosis will test your sanity, but I promise you are about to become stronger.  I know this because scoliosis has made me stronger.  Here are some things I struggled with in my scoliosis diagnosis and what I learned in the battle:  

Scoliosis made me feel broken.  When I looked at those first x-rays, a list of things ran through my mind, but one of the first thoughts I had was this: There must be some mistake.  That picture of me is broken.  

But guess what?  

There wasn’t anything broken about me.  My back was bent, but it was not broken. Those curves became part of my life–up and down, left and right, curved and straight.  In the end? Those curves were mine.  I chose what to do with them and that meant I made the most of them. 

Scoliosis made me feel ugly because none of my friends had this and they couldn’t relate to my struggle.  I would compare myself to other girls, noticing how easily they were able to bend at the waist or not worry too much about what they wore.  They didn’t have to hide a brace, after all.  After a while, however, I got tired of worrying about an uneven waistline because my brace jutted out from underneath my clothes. I accepted the plastic as my armor in the battle and I quit being so self-conscious. This was a major victory (you will have them too)!    

I admit I also experienced a lot of pain.  The physical pain was extremely hard for me; it tested me.  It’s hard enough to manage the peer pressure of teenage life, the natural changes your body endures, and the desire to fit in with your friends.  When you throw a scoliosis diagnosis into the mix, and you must now suffer physical pain, it all seems so unfair.   A teenager should simply not have to go through this, but there I was with a scoliosis diagnosis and now here you are too.   

I’m sorry, it’s hard, but I know you can do it.  You will do it because you are a fighter.

The pain will come in waves.  At high tide, I suggest making the most of it–that’s what I tried to do.  I would play a game, go for a run, or hang with a friend.  Don’t sit around in your pain, live your life instead.  

If you have a bad day (and you will), promise me you will go easy on yourself.  This scoliosis stuff is hard.  Just pick yourself back up, dust yourself off, and hop back in the saddle. 

Let me leave you with this bit of news:  I’m almost finished bracing.  When I started on my brace journey, 90% of patients who have a curve as severe as mine must have a spinal fusion with a long, painful recovery.  

I defied the odds.  

With my hard work, determination, and 23 hours of plastic brace living, I went from a 90% chance of back surgery to a million in a half chance.  In other words, there is virtually no likelihood I will have to have surgery. Ever.  

Here’s the good news:  if I can do this, you can too.  

You got this! I believe in you.  Go show the world how amazing you are and show them with a scoliosis diagnosis.

 

With much hope and love,

Meaghan Duggan

 

(If you want to chat about the challenges you are experiencing, please feel free to contact me at scoliosisgirlmtd@gmail.com.  I would love to talk to you, support you, and even pray for you!)  

 

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Katie Dowell

Hello,

My name is Katie Dowell and I am running for Mrs. Texas. Representing Houston County. Which is located in Deep East Texas or like we call it “paradise in the pines”.

 I was diagnosed through a routine screening performed at school when I was 11 years old. My first surgery occurred when I was 13 years old and included the placement of metal rods and two cadaver bones in. The nine hour surgery also consisted of two blood transfusions and was an experience I will never forget. Waking up with a swollen face, blood clots on the bottom of my feet and having to learn to walk again was what I thought would be the worst of it.

However, things took a turn for the worse. After a year of fever, nausea, tremendous weight loss and several rounds of physical therapy, I was told that I had an infection in my back. At this point I was 14 years old and felt like my outlook on life completely changed. I was angry, and I felt that my quality of life had decreased. I already had one big ugly scar on my back and now I would have to be cut all over again, not to mention the chronic pain that seemed to never go away. When the infection was found I was taken  into emergency surgery to have the rods removed and to get a biopsy of the infection. I spent weeks in ICU and, quite frankly, I only remember certain things. One moment I specifically recall was when the doctor came in to tell me that I had to have yet another surgery and have what they call a “wash out”. This was traumatic news for me, and for a 14-year-old, the scariest moment of my life. At that point I felt like dying would have been easier than living through more needles and medication. My medical team eventually found an antibiotic that could kill the infection that was in my body, and I was finally on my way to being somewhat normal. I spent many more years in physical therapy and learning to deal with the chronic pain that comes with this disease. 

I am now 24 years old and married to my best friend. But to be completely honest, there were times when I never thought that I would see this day. Extreme anxiety followed me around after the traumatic experiences of multiple surgeries. There were days I did not want to live any more because of the pain, there were days I felt ugly and deformed, there were days I did not think I was good enough. Thank goodness for my faith in God and the support of my family and friends,my mental health is in a much better place and I have learned to cope with the pain.

As a contestant in the Mrs. Texas pageant, my platform is advocating for early-stage Scoliosis detection and maintaining good mental health throughout chronic illness. I hope to use this opportunity to reach young children and teens who have faced similar challenges based around medical deformities and disorders, and to show them they can overcome whatever circumstances they are facing. They are not alone. No matter the scars, brace, uneven shoulders and hips, a rib that sticks out, anxiety, chronic pain – none of that takes away from life as a normal person. Our experiences make us unique, our scars make us beautiful.

 

“Scars show us where we have been, they do not dictate where we are going.”

                                                                        ― David Rossi

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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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Emily Painter

The summer of 2016, I had just graduated from elementary school and was about to start grade nine at a new school with new people. Growing up I had always gone to a separate Catholic school and I was now moving to a public school. I was excited but nervous to start this new chapter as any other 14-year-old is. One night my back was sore so I asked my mom to rub it, I bent over a chair and I heard her gasp, asking what was wrong with my mom kept asking me to straighten my back out and I kept responding that I was. Instantly my mom started freaking out saying she was bringing me to Sick Kids the next day. As I’ve grown up in and out of hospitals, I immediately declined to tell her I just wouldn’t go, and she was overreacting. As we kept arguing about it, we settled on visiting the local hospital the next day to get an x-ray. We got up and went and I was sent for my first of three x-rays that day. After the first one, I remember sitting in the room while being so angry at my mom for bringing me there, I was convinced she was overreacting, and nothing was wrong. The doctor came in within 15 minutes of the scan saying they needed to take some more photos and run over the images. Me being confused I followed the doctor where we proceed to have two other scans done. Now, I was nervous. I knew something had to be wrong if they were asking me to have multiple scans done. 20 minutes later we were called out by the doctor to review the x-rays. Staring back at me as my throat ran dry and my eyes started to well up, I saw the x-rays reflect the curve of my spine, the reason behind my reaction was the doctor saying that the only option I had was surgery. I was in disbelief.

            The thought of having another major surgery scared me so much. When I was eight months old when I endured surgery for neuroblastoma, childhood cancer. Although I don’t remember the event, the idea of having to be followed by another clinic was terrifying. Despite this, I never shed a tear in front of that doctor. Instead, she referred us to Sick Kids for a follow up as that’s where I see all my other specialists. The moment I step outside the hospital though, I broke down in tears. I was not having surgery and I was not having this whole situation. I spent the next 72 hours on and off crying as the news broke to my family that I was going to need major surgery. Anytime someone mentioned it I would instantly begin to cry. I wanted to run away from the situation instead of dealing with it. Eventually, my follow up appointment at Sick Kids came. This is where they told me that since seeing the doctor in my hometown that my back had already gotten worse. I don’t quite remember where my back was at this point, I believe around 55 and 62 degrees with a 32-degree sacral rotation. At this point, they also mentioned that it had gone past the point where it would continue to get worse until I would eventually become crippled. Even knowing this information, I was still dead set on not having surgery. I just couldn’t wrap my mind around the idea.

This follow up appointment is when the doctor had mentioned a brace saying, ‘It won’t fix it, but it should stop it from progressing, if it corrects it then that’s just icing on the cake’. I was set on it and we booked my appointment to get casted for a brace that same day, A few hours later I was getting casted for my brace, honestly one of the weirdest experiences I’ve ever had. They lay you down on a hospital bed and cover you in paper Mache essentially. I remember it being hot but other than that it was just weird. We left the hospital and were told to come back 6 weeks later for another x-ray and to get the brace. To be honest, I was so excited, and relieved, to not be having the surgery, (little did I know that a year later I would). 6 weeks flew by and I was about a month into high school. School was okay, I had friends, but I did find it hard to try and ‘fit in’. Don’t get me wrong though I look back at my grade nine self and cringe ha-ha. The time had finally come to get the brace, I was x-rayed again and there were no changes to my back. I got the brace and they gave me the whole rundown on how often to be wearing it. It’s a four-week process of working yourself up from sleeping with it to wearing it 22-23 hours a day. Life went on and I got used to it, I had a couple of difficult experiences with people knocking on it or awkward times where people would hug me and their face just changed to confused, which I found funny. It just became a part of me, but as much as I was gung-ho about it in the beginning, I slowly started to hate it. It was sore, itchy, hot and uncomfortable. I was become over it, to say the least. By this point, I was in the final stretch of my grade nine years meaning I was almost a year into having the brace. It was getting old fast and with summer approaching I was becoming even less motivated.

            It was a sunny day, so close to summer vacation maybe around May. I was having a discussion with my uncles’ girlfriend (Hi Amy!) and she told me about a model named Emm Arruda who had scoliosis, endured the surgery and was on the rise with a modeling career. Something just clicked. I had always wanted to model from a young age and I always thought if I had the surgery, I wouldn’t be able to ever do it. At my next appointment, it was like night and day. I was asking about the surgery when I could have it, what the recovery looked like, all the questions you could think of. I remember joking about it with the nurse. That week I was in my guidance counselor’s office trying to align my credits and ensure I wouldn’t fall behind as I was going to be out of school for at least a month. I came home that day and told my parents school was all sorted out and that I was ready to do this. They were both so shocked that I just took all this on and started organizing it on my own. The next few appointments consisted of discussing surgery and picking a surgeon along with multiple x-rays. Finally, I was put on a list and told I would get a call when a spot opened (this is because I requested to be put on a cancelation list so I could have the surgery ASAP). I got the call in November of 2017 that my surgery would take place on February 20th, 2018. My pre-op would be on the 11th.

            I was so excited oddly enough. By this time, I had transferred to the school, I currently attended and had sorted out all my second-semester classes to accommodate for my surgery. I even enrolled in online math so I could stay on track. The next few months went as normal. My final x-ray before surgery my final curves were at 78,88 and 32-degree sacral rotation. The 11th rolled around and we did all the pre-op work, which was some blood tests, pre-op photos and meeting with the anesthesiologists. I was so ready to endure this. I just wanted to have it over with so I could move on with my life. When the day finally rolled around, I don’t remember being nervous at all. I was just excited to have it finished. Although I didn’t sleep well the night before. That morning I showed up at the hospital with my surgery was scheduled for 8:30. I won’t go into detail over my hospital stay as I have two videos on my YouTube channel which shows and explains in detail how everything went. So, if you want to see that finish this then go check those out ;). To sum it up though, my surgery ran fast taking only 8 hours from start to finish. I spent 5 days in the hospital and then went home. I took a total of 3 weeks off school but continued to stay home and do homework like that until my exams rolled around.

Following the surgery, I had a week post-op appointment along with a 1 month, 3 months 6 month and year appointments. Just recently I went for my 1.5-year appointment where we reviewed everything again. The surgery reduced my scoliosis from two curves of 78 and 88 to one minor 12-degree curve and eliminated my sacral rotation. In short, the doctors killed it and it couldn’t have gone better. I have one final appointment at 2 years before they release me from the clinic, and I’m all done with follow-up appointments. I honestly can’t believe as I sit here, I’m 1 year and 10 months post-op. The time has flown by, I’m now in 12th grade applying to school for pre-med getting ready to start the rest of my life. I even managed to finesse getting signed by a modeling agency! (Shoutout Tyg, Cathy, Allison, and Sharon the most amazing bookers a girl could ask for Xx). I’ve also gotten the chance to interact with the one and only Emm who is an absolute doll and hopefully one day I’ll get to thank her in person for the inspiration she’s given me. This whole journey has taught me so much about myself and others. I’m so thankful that I made those YouTube videos as its’ given me the chance to share my story to over 70+ thousand people and allowed me to interact with hundreds more.

To everyone who’s been with me on this journey, at any point even if it was just a DM, thank you for being a part of my journey. To conclude, I’ll leave you with this, the day I thought my life was over (dramatic I know) turned out to be the start of the most amazing journey I’ve ever been on. I’ve interacted and inspired more people than I ever thought possible. Scoliosis truly changed my life for the better. So, when life gives you lemons, you take those lemons, you make lemonade, and walk with your head a bit higher because you can handle anything life throws at you. If you’ve made it this far thanks for reading my journey. If you want more in-depth of the actual surgery and pre/post-op check out my YouTube, my searching Emily Renee. Also feel free to message me on Instagram @/emilyrpainter about any inquiries, scoliosis related or not. Thank you to my parents for being my #1 supporters, I love you guys. All the love Xx.

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