Patient Stories

During the same visit that I got my scoliosis diagnosis, I also learned I needed surgery. It was shocking, scary, and confusing, but my favorite quote which got me through not only my scoliosis experience but changing schools, applying to college, and fighting for the starting goalie position was: “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

Haley’s curve was at 62 degrees by the time she had surgery, but it seems as if her drive, her determination, and her commitment to being great at absolutely everything she does never let her slow down. She has always kept moving forward. Perhaps because she’s braver than she ever believed, stronger than she ever seemed, and smarter than she ever thought! This Scoliosis Star shines brightly!

On May 17th, 2010, when I was fourteen years old, I underwent a spinal fusion. My spinal fusion was performed by Dr. Peter Newton at Rady Children’s Hospital in San Diego, California. At the time of my surgery, I had a sixty degree right thoracic curve that was only going to continue to get worse. Having a surgery was scary, but the thought of living a life of disfigurement, back pain, and physical limitation was scarier. That’s why I decided to have the surgery.

After my surgery, I was given a squishy heart-shaped pillow from a girl named McKenna Keyes. McKeena had the same scoliosis surgery I had, only she had hers two years before I had mine. Before McKeena’s hospital stay, she had been given a pillow as a gift, and that pillow had brought her so much comfort that she wanted to share that with others. So McKeena began giving out heart-shaped pillows to other scoliosis patients undergoing spinal fusions. When McKeena left for college, I decided to continue her work, and I began providing pink heart-shaped pillows, information, and emotional support to teenager girls who are preparing for spinal surgery like I did.

I spent six days in the hospital, and although my surgery and recovery were probably the hardest things I have ever been through in my life, I succeeded. I made it through both experiences, and I am now stronger than ever! I wanted to share my story to remind each of you that, as you go through your scoliosis treatment, you are not alone! I want offer others heart-shaped pillows to remind them that they have nothing but love and good wishes being sent to them. A heart-shaped pillow may seem like a small thing, but mine reminded me that I was not alone and that others cared about what I was going through. My pillow gave me physical comfort and emotional support. In fact, I still sleep with my pillow today!

If you’re faced with surgery and feel afraid, know that you can do it! You can reach the end of your scoliosis journey stronger and happier than ever!

In 2010, I was thirteen years old and in the eighth grade. My life was going smoothly until I played a field hockey game one day after school. During the game, I twisted my knee, and as a result, I had to see an orthopedist. Surprisingly, the doctor was unable to find anything wrong with my knee, but he did find a problem with my back. I was referred to a specialist, and I had x-rays of my back taken at the Spine Center at Nemours A.I. DuPont Hospital for Children. During my appointment, Dr. Shah informed me that I had idiopathic scoliosis, which is an abnormal curvature of the spine that occurs with no known cause. Dr. Shah explained that I had two curves, and I could clearly see from the x-ray that my spine resembled a backwards “S.” My curves were fifty-seven and fifty-five degrees, and this meant that a spinal fusion surgery would be the best option for my future health. After finding out that I needed to have spine surgery, my everyday life suddenly came to a screeching halt.

Once my parents and I made the decision to move forward with the procedure, the next few months were filled with the impending surgery and recovery as my only focus. It seemed to be all I could think about. My uncertainty and fear consumed me, and I began to imagine all of the worst possible outcomes. Fortunately, my parents were there for me every step of the way. They reassured me again and again that I was in a very capable surgeon’s hands and that they would be there for me through every part of my hospital stay and recovery. On the morning of my surgery, I was incredibly anxious, but once I talked to Dr. Shah and the nurses, I felt I could handle what was coming.

Both my hospital stay and my recovery were really tough. The nurses at Nemours were awesome, and they did their best to keep me comfortable, but the physical therapy was especially difficult. Still, I pushed myself every day while I was in the hospital. During my recovery time at home, I became slightly frustrated. I couldn’t do most things for myself, but my parents and my grandmothers helped me with everything that I needed. I was out of school for quite a while, but my friends were really supportive. They took time out of their school days to write me cards and letters, and they brought me small gifts and snacks to get me through my long days at home. Without the love and support of my family, my friends, and my teachers, I don’t think I would have made it through my recovery. However, I had tons of support, and I made it through.

My spinal fusion helped me grow into a bigger person, mentally and physically—I gained over two inches! Despite that fact that it was a long, emotional, and painful journey, I am glad I endured all of it. Without my surgery, I wouldn’t be the healthy individual I am today, and I wouldn’t be the healthy individual I’m going to become as I grow older. I truly value and appreciate Dr. Shah’s guidance and expertise. Being a participant in a scoliosis research study helps me feel connected to the Spine Center at A.I. DuPont, and it has motivated me to do more to help others who have scoliosis. As part of my senior project, I organized a fundraiser in my town to benefit the Setting Scoliosis Straight Foundation, and it was a great success. The fundraiser was my way of giving back to those who helped me through my scoliosis journey and helping future scoliosis patients.

Looking back now, I think I had the ultimate scoliosis experience, but when I was first diagnosed with scoliosis, during the summer before sixth grade, I had no idea what would be in store for me over the next eight years. I wore a brace sixteen hours a day for three years, and in those three years, wearing my brace produced positive results, so it was decided that I no longer had to wear it.

After four years of not wearing my brace, I began to see changes in the way my body looked. During my senior year of high school, I had a check-up. My doctor told me that my curves had dramatically increased from thirty-two and thirty-four degrees to fifty-two and fifty-one degrees. I even had a small eleven degree curve in my neck. All of this added together meant only one thing: spinal fusion surgery was necessary.

Even though I needed to have the surgery, the thought of a surgery was absolutely terrifying. My parents and I decided to postpone the surgery until after I finished my first year of college, but as I went through my first year of college, I became extremely self-conscious of the way my body looked. On top of my self-consciousness, the pain I felt in my ribs and hips was becoming unbearable. Although the idea of spinal fusion frightened me, I began to realize that it was the only way to change my life for the better.

My surgery lasted eight hours. When it was done, I had two rods and twenty-four screws in my spine, and I finally had a spine with minimal curves. Even more exciting than all of my new hardware and straightened spine, was that I grew two inches in the process!

At first, the recovery process was extremely difficult, both physically and emotionally. However, with the help of the amazing nurses at Nemours/Alfred I. DuPont Hospital for Children and my wonderful doctor, Dr. Shah, I was on my feet in no time! Once I got home from the hospital, my parents pushed me to be active and perform small tasks around the house to rebuild my strength. I did this every day, and it worked. I am so happy that my parents drove me to get up and keep moving, because it really did speed up my recovery. It only took six weeks before I was able to go back to work as a camp counselor, where I spent my days chasing after eight year olds, and after seven months, I was able to snowboard again as if I didn’t even have two titanium rods in my back! To mark my one year post-op anniversary, I ran a ten-mile race with my dad by my side. Later that day, my family and I celebrated with an awesome cake that had pictures of my x-rays and scar on it!

I am so grateful for everyone who helped me throughout my journey with scoliosis. I can’t thank Dr. Shah enough for everything he has done for me! Having spinal fusion surgery was definitely the best decision I have ever made. Looking back on my long journey, I can honestly say that I wouldn’t change a single thing. I am proud to have conquered scoliosis, and I am proud every time I look at my scar because I am reminded of everything that I have overcome to get to where I am today. This scar on my back is mine, and I earned it!

My journey started in 2007 at my very first appointment at Nemours/A.I. duPont Hospital for Children with Dr. Peter Gabos. I was thirteen years old and was told I had scoliosis. I could not even say that word out loud; it just felt weird. But, looking back, I had no idea my world would be changed and turned upside down in one of the most positive ways imaginable.

My spine was measuring two curves, both in the thirties. Over a two-year span of monitoring, starting from that day in 2007, my spine curved into the surgical range of over fifty degrees. Bracing was never an option due to my skeletal maturity and degree of curvature. So on June 28, 2010, I had spinal fusion surgery for my scoliosis. My two curves measured fifty-three and thirty-five degrees that day and after a five-hour surgery, I came out with two rods, eighteen screws, and a very straight spine.

I spent five days in the hospital learning how to adjust to a new life of having stainless steel rods and screws in my spine. It was absolutely one of the hardest things I ever went through. If it were not for the amazing team at duPont and the best surgeon ever, Dr. Gabos, visiting me twice a day every day, I would not have been able to get through it. I am fused from T4 to T12.

To make this story even better, I had the once in a lifetime opportunity to shadow Dr. Gabos for five months this past summer during an internship for college. I got to see firsthand how the same surgery I had was performed, and I was able to meet a lot of amazing patients who, like me, are going through their own scoliosis journey.

Scoliosis was the best thing that happened to me. Sounds crazy, right? I had the best surgeon anyone could have ever asked for, a straight spine, and a beautiful scar I am so proud to show off. Dr. Gabos forever changed my life, and I am truly indebted to him for that!

I really feel like the luckiest girl in the world after everything I went through because it shaped me into who I am now! Today, I am almost six years post-op, and I feel absolutely amazing!

The biggest piece of advice I could give anyone reading my story is TRUST. Trust your doctor and your support system, and know that everything will work out the way it is meant to be! It is not easy, but you will come out of it all a much stronger person than you already are. Believe me!

Courtney Rone has a scar. From the middle of her shoulder blades straight down to her lower back is a faint white line and daily reminder of what she’s overcome to keep doing what she loves.

At the age of 12, Courtney was diagnosed with scoliosis. “When I first learned I had scoliosis I didn’t know much about it,” she says. “I knew of course that it was a curvature of the spine, but beyond that, I had no idea of what might happen down the line.” Courtney had started with a relatively minor bend in her spine but each year it seemed to be progressing much faster than expected. The hope was that wearing a brace would slow the progression before surgery was needed. But she was told that there was a chance she could one day need surgery if bracing was not effective.

That day finally came in 2015 when Courtney was 17. Wudbhav (Woody) Sankar, MD, Courtney’s orthopedic surgeon at The Children’s Hospital of Philadelphia, told her she had reached the required level — spinal rotation of 53 degrees and 32 degrees. The brace had not worked for her, even though she’d been diligent about wearing it.

As the captain of her competitive dance team, pageant competitor, model and busy high school student, the thought of surgery was frightening. “To be honest, the first day that I was told I needed the surgery I thought, ‘this is going to change everything.’” She worried about how treatment might keep her from her dance team or continuing her dream to model. She knew she would have scars from surgery, but didn’t know exactly what to expect as a future goal.

Surgery with the promise of pursuing her dreams

Dr. Sankar recommended a posterior spinal fusion with instrumentation, in which he would correct the curve in Courtney’s back and prevent it from getting worse. Dr. Sankar took Courtney’s concerns about life after surgery seriously. “I believed in Dr. Sankar and his nurse practitioner, Sharon Farrell, completely,” says Courtney. “They took the time to understand what was important to me and what I was expecting my future to hold. They reinforced that their goal and priority was to make sure my surgery would not stand in the way of my dreams, and that I’d have the same flexibility and strength after my spine had been fixed.”

Dr. Sankar kept his promise. The evening of her surgery Courtney was sitting in a chair, the next morning she felt good enough to walk the hallways. Soon after she was at home recovering, taking walks three times a day. Within five months, she was back with her team easing into rigorous practices and ready to take on the world.

“Courtney is a great example of what can be achieved with scoliosis surgery at a place like CHOP,” says Dr. Sankar. “We perform the highest-quality procedures for young people with spinal deformities and always consider a patient’s individual lifestyle before making treatment decisions. While our priority is to safely correct and stabilize the spinal curvature, we always try to preserve the patient’s flexibility if possible. Our goal is for patients to be able to return fully to the sports and activities that they love. And when you have the commitment to physical therapy that we saw with Courtney, the end result can be absolutely incredible.”

Back in action

Getting back in the studio was powerful for Courtney. “I have been dancing since I was 4 years old,” she says. “It’s a part of who I am. Dance lets me express myself through movement, emotion and interpretation of music. It is a part of myself that I can share with everyone. My scoliosis is now just a piece of the experience. My rods and hardware, and everything I’ve been though, make me a better dancer and person, more determined to succeed, driven to do my best and show that scoliosis is not a game changer but just a part of who I am.”

About eight months after surgery, Courtney and her dance team competed in a national competition, placing sixth in Pom routine and eighth in Jazz. “As a captain, I felt determined to make sure my team knew I was ready to go and ready to compete at the highest level. Because of Dr. Sankar’s care, I was able to do the exact same routine as the rest of the team. My coach did not have to make a single change to accommodate me.”

Nine months post-surgery, Courtney was in the spotlight once more, this time as a competitor in the Miss Teen New Jersey International pageant. “My platform was: Body Image, Finding Strength in Scars,” says Courtney. “I wanted to remind people that scars are recognition of success. There is a mental and physical strength it took to get through diagnosis, pre- and post-surgical preparation and recovery. The scar shows where you have been, not where we are going, something I think is important to remember.”

And now, Courtney can add pageant winner to an already impressive resume. She won the title of Miss Teen New Jersey International 2016, and is excited by the opportunity to have an impact on so many. “I see my title as a way to encourage others who may have a bump in their road. I want to show what can be achieved with a positive attitude.”

Courtney Burns has always excelled academically. To say she is intelligent would be an understatement, but even she wasn’t able to know that scoliosis would change her life forever. After meeting Dr. Samdani, Courtney decided right then she wanted to be a doctor.

Today, Courtney’s past the point of being teased about her brace, but she’s still using one of the skills she learned while she was wearing it. Courtney has learned how to find the positive in all situations. Now, scoliosis is the silver lining that re-shaped Courtney’s future, and that’s a very good thing!