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Patient Stories

Stacie

It all started when I had a 25 degree curve. By the time it was close to 50 degrees, I didn’t like the way my body looked. After meeting with Dr. Shah and discussing a spinal fusion, I knew I had to have the surgery. It was the best decision I ever made! But I’m not going to lie. There was some pain involved – no pain, no gain! My family and friends got me through the pain with all their good thoughts, gifts to remind me of them, and love. It made me feel better knowing everyone was thinking of me. I even discovered how much my brother cared about me! WOW! The best thing about being in the hospital was that my Mom was there. Some of the male nurses weren’t bad either! After I went home, I couldn’t believe how quick my recovery was. I was back in the ocean by the end of August (I had the surgery in July)! When it was time for my first post-op visit, I was so excited to see all my nurses again! While I was up there I talked to one of the girls who just had the same surgery. I wanted to make her and her mom feel better. It has been 2 years since the surgery and I never looked better! Thanks Dr. Shah!

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Ryan

My name is Ryan, and I’m now sixteen years old. In June 2006 I was diagnosed with scoliosis because my pediatrician had concerns about my spine. The x-rays showed that I had a pretty big curve starting in the thoracic section of my spine. My family and I were shocked at seeing how large the curve was and how it had gotten so bad without us being aware. I then had to wear a brace that I was very upset about being in all day. I was in middle school when this was all occurring and it was very tough because I felt that everyone was now looking at me like a different person. The physical pain of the scoliosis was hard, and the emotional pain was even harder. In 2008, My Doctor, Baron Lonner, decided along with my family and me, that the curvature was so severe that I required surgery. This was a scary thought because I had never had surgery before. After the surgery I experienced a lot of pain, even though this was normal, I felt as though my back was being weighed down by a ton of bricks. Within about 2 weeks I was able move more and feel more comfortable within my body. Two years have passed and I am able to do everything I was doing before, but without the pain. If I hadn’t gotten this surgery I don’t even want to know what would have happened. Overall this has been one of the best decisions I have ever made and now I don’t have to wonder “what if?” I would love to thank Dr. Lonner for always being available and so supportive throughout this entire experience.

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Jamie

My name is Jaimie and I am currently 20 years old. I was diagnosed with scoliosis at age fourteen in the middle of eigth grade. When I first found out the news while sitting in the doctor’s office, I was devastated, heartbroken, and confused. I wasn’t even sure what scoliosis was, all I knew was that I had a severe case and surgery was necessary to prevent life-threatening complications later in life.

The first thing that came to mind was “How am I going to play soccer?” Soccer has been my life since I was four years old, and knowing I had to give it up for a year to receive surgery to straighten my spine was something I could not comprehend. But after much needed support from my family and doctors, I knew the surgery was something I had to do for myself to live a healthy life. Thinking about the surgery, I was scared with so many endless thoughts running through my head, but once I met Dr. Newton at Children’s Hospital, I realized I had one of the top doctors in the world taking care of me. Knowing I had the best, I was more calm and relaxed.

Looking back to those dreaded days before surgery, I could not be happier with my decision to follow through with the surgery. My results are phenomenal and I am more satisfied with my self-image and appearance now after the surgery than before. I am so thankful for the constant support I received from my family, friends, soccer team, and most importantly my doctors who performed such an extraordinary surgery. Support and self-determination are the two most significant aspects that pushed me through the surgery and also the recovery process. I had such a strong will to spend continuous hours in physical therapy to get back to playing soccer the second I received permission. I played soccer after six months when the normal recovery period is one year, I ran again before the usual time period, and experienced so much more because of the motivation that surrounded me. I had such a positive experience with all I encountered through the process. I am stronger now than ever before. I would not change one day from before or after the surgery because it has made me who I am today.

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Piper

My name is Piper, I am 14 and I was diagnosed with scoliosis. I didn’t know what that was until I was in 6th grade when I found out that I needed surgery for my severe scoliosis. I wasn’t scared because I knew that it would correct my spine but I was nervous about what would happen after the surgery. When I had scoliosis I had many problems. When I got home from school, I would have back pains and I wouldn’t be able to sit up for long. Also, when I wore shirts, you could see my back sticking out and it was very embarrassing because it didn’t look normal. Luckily I was able to get surgery to fix my spine. After my surgery in 2008, I remember a lot of pain in my back and not being able to move that much or it would hurt. After a few days at the hospital, I would have to get up and walk around so I could get my back used to movement and so I wouldn’t stiffen up. After the 5th day I finally went home and started to do more mobile activities. Now that it has been 2 years after my surgery, I feel wonderful and am able to do all the activities I love to do. I would like to thank Dr. Shah and everyone at DuPont Children’s Hospital for my successful surgery and helping me all week after my surgery. I am glad I got the operation because now I am happier with my life and appearance.

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Karen Alvarez


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Chad Biro


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Valerie Chapman

MY JOURNEY WITH SEVERE SCOLIOSIS

I was thirteen when I was diagnosed with severe scoliosis. Wearing a brace wasn’t even an option for me.  The only thing I could do was have surgery, and I’ll never forget what it felt like when I discovered that this would be the only way to fix my condition.

I had been complaining about my back pain for a few months, but it wasn’t until my grandma was rubbing my back that we noticed an incredible hump around my lower back.  I’ve always been long and lanky, but my body had never been something that I was self-conscious about.  Now, I had a hump in my back, and I’d noticed that my waist was no longer symmetrical.  We were clueless.  We had no idea what was wrong with me. I was terrified, and I was worried.  I felt like I had some unknown disease, but I also had this feeling of hope.  I knew that whatever it was, I would be okay.

The s-shaped curve became apparent in less than six months, a rare case never seen by my pediatrician before; that is until I came into the doctor’s office the following day to find out what was wrong with me.  I didn’t know what to expect.  My pediatrician referred me to an orthopedic surgeon, a little miracle worker named Dr. Shufflebarger at Miami Children’s Hospital.

On April 2nd, 2013, one week after spring break, I had spinal fusion surgery.  I spent seven days in the hospital and missed a month of my last year of middle school in order to recover.  Recovery was the hardest part of my journey with scoliosis.  Being forced to leave all of my responsibilities behind drove me crazy!  I went from always being productive to feeling helpless and being homeschooled from my bed.  The recovery process didn’t allow me to go on rollercoasters for a year, so I missed out on memories with my graduating class when they went on their trip to a theme park, but I returned to school in May and delivered the class speech at my 8th grade graduation as previously planned.  This was the first time after surgery that I realized that even though I had sacrificed being my usual active self, it was all going to be worth it.  I would be healthy again, and for that I felt blessed.

Just one and a half months after my surgery, I flew to New York City to attend my brother’s graduation.  New York is my favorite place in the entire world, and when I stepped foot in the concrete jungle, I had completely forgotten that I had been lying in a hospital bed just weeks prior.  I was already climbing flights of stairs in the Subway, walking through Central Park, and experiencing life to the fullest again. I’ve always known that New York was a magical city, but this was when I truly realized it.  I still felt pain, but nowhere near the pain I had felt prior to the surgery. I know that the recovery process is different for everyone, and it’s hard, but if I could do it, then so can you!

It’s been over two years since my surgery.  As of now, I’ve ridden tons of rollercoasters and been to New York City several more times.  I’ve begun learning how to code, was elected Vice President of my high school class, became a part of my school’s badminton and bowling teams, and participated in all other “normal” teenage things.  I’m even the founder & CEO of my own business!  This surgery has made me more confident than ever! I’ve learned to embrace all of my imperfections, because they’re a part of who I am.  Scoliosis is part of who I am, but I won’t let it define me.  Don’t let scoliosis stop you from following your dreams.  I didn’t.  At just sixteen years old, I’m currently signed with two famous modeling agencies in New York & Miami.  I had dreamt of becoming a model since I was eight years old.  Who knew being long and lanky would come in handy?  I have a nine inch scar along the middle of my back, and honestly, I think it’s pretty cool!  It sets me apart from everyone else.

If there’s one thing I’ve learned about working in the fashion industry, it’s that being unique gets you far.  Makeup can cover up these imperfections, but if makeup didn’t exist, I’d still be proud to walk the runways with my scar totally exposed.  Beauty isn’t about looking perfect. It’s about being confident.  Believe it or not, my epic journey with scoliosis gave me an incredible sense of pride.  To help others feel the same sense of pride, I also created a fashion and lifestyle blog where I write about my personal experiences in the industry and the obstacles I’ve had to overcome.

I have so many more goals that I’m working hard to accomplish every single day.  I never stopped believing in my dreams, not even when the doctor diagnosed me with severe scoliosis.  As a result of my abrupt scoliosis, my pediatrician now gives scoliosis check-ups every three months instead of every six months.  It feels pretty great knowing that my case now prevents other kids from going through this little bump in the road.

I feel so blessed to have had such an incredible support system throughout this entire process.  Having family and friends by my side played a huge role during my recovery.  I’m so thankful for my doctor, nurses, and the caring staff at Miami Children’s Hospital for giving me another chance to feel confident with my body.  I truly believe that the most important thing you can do during times like these is value yourself, believe in your worth, and know that one day all your dreams can become a reality.  Don’t be scared to face scoliosis, and don’t be scared to follow your dreams.  You can get through this!  No medical condition, such as scoliosis, should ever stop you from achieving greatness!

When my grandma first found the hump in my back, I knew that, in the end, I would be okay.  In reality, I was better than okay.  I was able to overcome more obstacles than most teens my age.  The journey is part of who I am now, and I am proud of that person.  Not many people know that I went through this, but it’s something I’m proudly sharing with you because I know that you can get through it too!

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Tara Vasi

I was diagnosed with scoliosis in 6th grade during a routine annual check in the locker room during gym class. I didn’t know what was going on at the time or what the gym teacher was looking for, but when she tapped me on the shoulder and told me to come with her, I knew something was wrong. There were a few other girls that got tapped on the shoulder too, but we were taken to different rooms, and I never saw them again.

My parents took immediate action. My mom made an appointment to get an x-ray at Children’s Hospital in Boston. I still didn’t really understand what the visits up to Boston meant. We usually only went up there for special events, to eat clam chowder at Fanuel Hall, or that time we flew to Disney Land.

I didn’t understand why the doctor put a plastic photo with a squiggly line on the lit up board, or the constant need to wear that itchy backwards dress and bend forward to touch my toes. What I did understand was that while we were in Boston for these doctor visits, we always went to the Cheesecake Factory and at that age, I would pretty much do anything for a slice of cheesecake.

I stopped being excited about the post cheesecake slice when I was introduced to the brace. They told me the brace would fix my spine, or at least stop the curve from getting worse, while I finished my growth spurt. Even as this symbol of straightened hope, I quickly learned to hate the brace more then anything in the world. It was tight, hot and uncomfortable. I even started to not like cheesecake.
I was supposed to wear it as much as possible, to school, to bed, etc. I resisted full throttle and this caused friction between my parents and me, even more so then the typical adolescent/parent fights about makeup, clothes, bedtimes, and extra curricular activities. It even caused more friction between my parents.

They wanted me to wear it to school! I pleaded with them to not make me wear it to school. Did they not remember the opening scenes of Forest Gump?

I wore it to school one day. One day. A kid knocked into me. He literally knocked. I was so embarrassed about having to walk around like a zombie is a corset. I began to ditch it at the bus stop behind the “Welcome to Pine Ridge Estates” sign before getting on the bus to school and then putting it back one before I walked home from school.

I had no one to talk to about my dilemma. I felt like I was forced to lie to my parents.  Didn’t they know how painful the brace was? How painful middle school was? Did they think I was just being a whiney brat and making it all up? I needed someone to help them understand what I was really going in my body, heart, and mind.

I wonder if the brace would have corrected my curve slightly, had I actually listened to the doctors, and my parents, and wore the brace for the recommended amount of time each day. I wonder if I had had someone to talk to, a confidant, or someone who had been through it before, if I would have resisted the brace less.

I didn’t want to have a crooked back, but I was a kid and this ‘curved back thing’ didn’t feel like something a kid should have to go through. I didn’t think about the long term. I just wanted to be accepted. To be cool. To ride my bike and play soccer. No one else seemed to need a brace. It felt like I was the only one going through adolescence with a spine issues.

We went to a physical therapist for alternatives to the brace. She gave me a list of exercises to do every day, including Cat/Cow, spinal flexion and extension, seated side stretches, or lateral extension. I usually did my exercises while watching reruns of Seinfeld with my Dad.

The results of doing the exercises were amazing. I slept better and had less back pain during day-to-day life. The brace didn’t work for me, but this did. It was like a miracle.

Since then I have devoted myself to yoga. The practice helps with my body’s compensation act for the curve that exists, resulting in less pain and better posture. Choosing yoga also creates inner awareness, empowerment, and acceptance that has improved my overall quality of life. I love sharing the gift of yoga with others and hope that by giving back to the community, I can give young girls everywhere hope that you can still lead an awesome, fulfilling and happy life with a curved spine.

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Robert Savich

Detroit Marathon 26.2 Mile

I have scoliosis that started in middle school and grew to an 85% curvature by the end of high school.  I had a total of four major back surgeries, fusions—with rods and all.  The last surgery removed all of my hardware, as the initial fusions held.

It was difficult to stay very positive in those days, but I always did.  I was always a popular guy.  I never showed any weakness, and people didn’t ask about my scoliosis.   Still, it was always on my mind.

My back is still twisted, but I stay confident, and I don’t complain when it gets uncomfortable.  In fact, I never did.  Even after surgery I would not take much of the pain medicine, as I didn’t want to get addicted to it.

My experience with scoliosis has definitely made me stronger.  I am now thirty years old.  In the past year, I got married to my amazing wife, Kristina, and we are now the proud parents to a healthy boy named Marko.  He reminds me of myself when I look at him.  We are both healthy!

I am currently training to run the Detroit Free Press International Marathon on October 18th of 2015. That’s right!  You read correctly…26.2 miles!

When I run, I will be running for those who struggle with scoliosis and for my son Marko!  I had a very severe case of scoliosis, but I knocked it out, and you can too if you stay strong!

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Rachel Johnson

When I was fourteen years old, I was blindsided by a diagnosis of scoliosis. I was suddenly faced with the reality of having a severe curve in my spine that could only be corrected by spinal fusion surgery. I had been a passionate dancer since I was three years old, and I had no idea what my diagnosis meant for my future. What would my dancing look like after surgery? No one could tell me for certain, and that’s what scared me the most.

Following my diagnosis, my family and I began the process of searching for a surgeon. After appointments with a few doctors, we went to Nemours duPont Hospital for Children in Wilmington, Delaware and met with Dr. Suken Shah. As soon as we started talking, I knew he was the right doctor for me. After meeting Dr. Shah, everything went into fast motion. Before I knew it, the date of the surgery was set, and it was constantly looming in my thoughts. The day seemed to approach at an exponentially rapid speed, and by the time it arrived, I was absolutely terrified.

On July 6, 2011, I had spinal fusion surgery. Despite all my fears, the five-hour procedure went perfectly. Looking back, I couldn’t have asked for a better surgeon. During my five days in the hospital, I set my mind on recovery. I knew the worst was over, and all I had to do now was work towards getting my body back into shape.

The five-month recovery process was undeniably one of the hardest things I have ever undergone in my life, but it has completely shaped me into the person I am today. Slowly but surely, I got my body back to where it had been pre-surgery. The road was long and the journey was hard, but I now dance at a level that I never thought would be possible with two pounds of hardware in my back.

This entire experience has strengthened more than just my spine. I have learned so much about myself and discovered a confidence I never knew I had. This entire experience was an inspiration to me, so I decided to do my senior graduation project on my surgery. I made a video featuring myself, two of the girls I have mentored, and my surgeon, in which we all discuss scoliosis and how far it is possible to come after surgery. This video continues to make me smile every time I watch it.

Still, the most rewarding part of this entire experience came at my one-month post-op appointment. Dr. Shah asked me to mentor a girl from Bermuda who was about to have the same surgery I’d just had. One thing led to another, and I have now had the opportunity of mentoring several girls facing spinal fusion surgery. It has been incredible to be able to impact these girls’ lives so directly.

If someone had told me three years ago how much this surgery would change my life for the better, I never would have believed it. It is now clear, however, that it has been the best thing to ever happen to me, and I would not trade a second of this experience for any other.

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