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Patient Stories

Marisa Gelbart

Hi everyone, my name is Marisa Gelbart and I’ve been a part of the Setting Scoliosis Straight team for a little over a year now. However, besides being a part of Setting Scoliosis Straight, I’ve been mentoring people of all ages that will be having a spinal fusion surgery. While I mainly work with kids, my parents usually help mentor the parents of the child who will be the patient in their upcoming procedure.

I was diagnosed when I was ten (fourth grade). My older brother Eric and I worked for around five years traveling to different surgeons, physical therapists, and specialists that would try making our scoliosis more bearable than it was before. About 3 weeks after my 15th birthday, I ended up having spinal fusion surgery done by Dr. Peter Newton and his amazing team. My last x-ray before the surgery was an all time high of 107 degrees. The surgery lasted 9.5 hours and now that it’s behind me, I’m beyond grateful that I got spinal fusion done.

My advice for future patients would be to remain calm and look for the positive in all of this. Even though the degree curve and surgery time seem daunting, that isn’t the reality that many people face for this procedure. If anything, it’s less than half of that. The point of this procedure isn’t to make you think you failed with physical therapy and the brace didn’t work, this is allowing you to have a more comfortable, and happier standpoint in your life.

The reason I enjoy giving back to others is because when I was told I was going to need surgery, I felt like I failed all the hard work I was putting in. I was always told that surgery was the absolute last resort, and not a good resort either. However, after the entire process I learned how incorrect those statements were, and I’ve been able to grow as an individual much more confident in my skin and capable to do more things than ever before. I didn’t think anyone could relate to me because of the intensity of my curve compared to others, but now that I’m on the other side of the fence, I’ve come to find that I’ve related with so many people no matter what the degree of their procedure was. Throughout the entire process, there wasn’t one person who wasn’t on my side, and my family and friends have been there the entire way, plus now I can say I’m a cyborg.

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Tania Richard

My name is Tania Richard. I am 21 years of age and live in Miami, Fl. I was diagnosed with scoliosis when I was 8 years old and have been seen by Dr. Shufflebarger ever since. Great doctor by the way. I had upper and lower back surgery about two years ago now and ever since then I have had no pain or discomfort unlike before. It has been a while now and I feel great about myself and have no complaints. Before I had scoliosis surgery my spine was shaped like an “S” and I was concerned with my body image. I was afraid to wear a bikini because of how it would look on me. Now after my back surgery I feel confident and my self-esteem went back up. I am proud and feel comfortable wearing whatever I want. It has been the best decision I have ever made. Participating in this study means a lot to me. It shows patients how a surgery can be life changing to someone to better their health.

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Veronique

On July 30th of this year, I underwent surgery for my scoliosis. This was my first surgery ever, so needless to say, I was very nervous and afraid. My surgeon, Dr. Stefan Parent, really reassured me that I would be okay. This helped me trust him with my surgery. The first two weeks after surgery were the most difficult. I hardly slept at night because of the pain and nausea caused by the pain medication. I was certain that the pain would never go away and that I would never return to my normal life, but after just three weeks, I could see a big improvement. I didn’t walk like a robot anymore, and I even returned to school. After one month, the pain was completely gone. Now, I am happy with the results of my surgery. The speed at which the body is capable of recovering amazes me! I feel better about myself, I have no more complexes about my back, and I can confirm that this surgery was worth the pain.

 

 

 

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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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