Patient Stories

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!

Curvilinea

I was ten years old when I received my brace.  I wore it for twenty hours a day with the amount of time gradually decreasing until—two years, two months, and two days later—I no longer was required to wear it.  My time in my brace was incredibly difficult; I developed severe depression and anxiety, but I was attached to my brace and terrified that if I took it off, my scoliosis would worsen.  After the brace came off, I did my best to pretend the scoliosis didn’t exist.  I had obvious limitations, but my scoliosis was rarely talked about, and I shied away from it.

Four years after the brace came off, during the summer before I was beginning college, I had a routine check-up with Dr. Shah.  My curvature had increased dramatically to fifty and thirty-five degrees.  I was blown away that the bracing I had suffered through did not work, and I was shocked that I would need a spinal fusion.  We decided to wait until my first year of college was finished before performing the procedure. During that year, I was prescribed painkillers because the pain became so excruciating.

After an eight-hour procedure and five days in DuPont, Dr. Shah and the nurses sent me home.  Recovery was incredibly hard, but I eventually healed and continued my life as an art student at Tyler School of Art at Temple University.  It wasn’t until my junior year as a Fibers & Material Studies major that I finally began embracing my scoliosis by creating my first spinal sculpture.  From then until I graduated, my art centered solely on scoliosis, the spine, curves, vertebrae, and the hardware associated with a spinal fusion.  I created sculptures, digital prints, and most importantly, silkscreened repeat patterns.  For my patterned fabric, I utilized and abstracted skeletal structures, which were incorporated into patterns that emphasize the curvature of the spine as a response to decorative arts and wallpaper motifs.

My work was greatly influenced by the consequences and image of my spine’s contorted structure.  Abstracting single images that were inspired by my spine, I created a repeated pattern.  I implemented the curvature of my own spine to reflect the repetitive nature of any medical ailment and the background it creates in one’s life.  The pieces I created were the focus of my thesis show, titled “Curvilineal,” which is defined as “formed, bounded, or characterized by curved lines.”

Using scoliosis to create art became a therapeutic coping mechanism that I still employ today.  I have grown to embrace and use my curvature and my experiences growing up as a patient of scoliosis.  I still use the spine in my artwork, and I allow the shapes to form patterns for new fabric.  While the entire process of treating my scoliosis was difficult, I have no regrets about having surgery.  I find solace in my experience.  It allowed me to combine something I had to do with something I love to do.  It presented me with the chance to cope with scoliosis through art.

Surgery Can Change Your Life

When I was eight years old I was diagnosed with scoliosis which led to an orthopedic appointment at A.I DuPont Hospital. My scoliosis meant I had to wear a brace. I wore the brace at night, and sometimes when I came home from school. Not having to wear the brace twenty-four hours a day gave me a little freedom.

During the course of treatment, Dr. Shah, my surgeon, kept looking to see if the curve in my back was getting worse or better. He helped me through the process of wearing a brace. He wanted to make sure my curve would not get worse, so at my six month follow-up appointment, I had to have x-rays done again. I thought the hardest part was after the x-rays, when Dr. Shah looked at my results. I did not want to hear any bad news, and for a while I didn’t, but my life aside from going to my follow-up visits was crazy too. I attended Assumption Blessed Virgin Mary through eighth grade. I was in basketball, softball, and band. Once I reached Avon Grove High School, I stuck with band. I did not want people to know about my scoliosis. It was a struggle for me in some ways, balancing between my brace, my appointments, and all the activities going on. I did not have any restrictions, although I still worried about the brace and how it was affecting me. When my friends finally found out about my scoliosis, they were extremely supportive.

During my sophomore year in high school, Dr. Shah saw that my curve was getting worse, and he recommended spinal fusion surgery. Dr. Shah explained what it was and how the surgery would be performed. He told me that I was not the only one having the surgery; there are many others who are having it and who have already had it. He said that after the surgery and recovery, I would be able to return to my normal activities. The thought of surgery was stuck in my head for days. Through all of what he was telling me, I just kept thinking, ‘Why me? Why does this have to happen to me?’ Others have had to undergo spinal surgery, though, and one of those families helped mentor me and my family through our experience. It was hard to believe everything Dr. Shah had said, but sure enough, it was true.

After my surgery, I was in the hospital recovering for five days. I had a severe amount of pain which would not go away. After the hospital, I also had to recuperate at home for two weeks. When the pain from the surgery ends, you have to learn how to do some activities over again. For example, stretching, walking, and even just sitting up all have to be relearned, but it was all worth it because now I am back and doing all the things I love. My spinal surgery made me become stronger and more confident.

I have been to A.I for so many appointments and two operations. Spinal fusion surgery has shaped me into the person I am today. Dr. Shah has influenced me to become a music therapist, and when I go to the hospital now, I see kids that I want to help. My hospital experience has helped me realize that not all kids are as fortunate as I am, which makes me want to help even more. Also, with all the experiences I went through at A.I, I want to give back. Being a music therapy major will allow me, after graduation, to help soothe kids’ stress and pain while they’re in the hospital. I want to continue playing music for myself and others. Sure, I may have rods and screws in my back, but that does not disable me or stop me from achieving what I want to become. I have been accepted to West Chester University’s music program, where I will major in Music Therapy, which is a joint program offered through West Chester and Immaculata University. Scoliosis can change your life for better or for worse. It made mine better.

One of the most common questions spinal fusion patients are asked is how their surgery has changed or affected their lives. In 2007, Amanda had her scoliosis corrective surgery at the age of thirteen. Amanda’s spinal fusion left her with two twenty inch rods and eighteen screws in her back. Though her surgery was extensive, and her recovery was difficult, Amanda used this time to learn more about herself. It was during her recovery that Amanda discovered her love of baking. As Amanda said, “Baking helped me to ease my mind from the pain and focus on the positive.”

Amanda’s newfound passion for baking not only helped her make it through her recovery, it also shaped the entire trajectory of her life. Currently, Amanda is attending the Culinary Institute of America in Hyde Park, New York, where she is pursuing a Bachelor of Arts degree in Baking and Pastry Arts, and she has also helped spawn a very successful family business called Kupcakes & Co.

In case you were wondering how Amanda’s physical recovery following her spinal surgery has progressed, now would be a great time to let you know that Amanda plays competitive club volleyball, she water skis, and she snowboards. Since her surgery, Amanda has also completed three half marathons and three triathlons. In other words, Amanda is doing great!

Hi. My name is Ali, and I was diagnosed with scoliosis when I was thirteen. My scoliosis was detected during a routine check at school, and my mother quickly made an appointment with an orthopedic doctor who I would spend a lot of time with over the next four years. At my first appointment, my main curve was only about twenty degrees, and though it wasn’t much to worry about, the doctor wanted me to come back every few months to make sure my curve wasn’t increasing. A year after my diagnosis, my curve had increased to thirty-one degrees. It was time for the dreaded brace.

From ages fourteen to seventeen, I had to wear a brace for twenty-two hours every day. I was made fun of daily at school, and it got so bad that I would cry every day before going to school and beg my mom to please just let me have one day where I could feel “normal.” I would try to take my brace off and hide it, but my mother always knew, and so I wore it day and night. My brace was painful too. My ribs stuck out a lot in the front, and for two and a half years, I had a big bruise across them. I can still feel the pain when I think about wearing my brace, and it makes me cringe! No matter how much padding was put in, it was never comfortable. At age seventeen, I finally got to take the brace off for good! My curve stayed at thirty-one degrees. My doctor promised that I would never need surgery, and that I would be fine. Then, the back pain began. The pain was so severe that when I would lie down at night, I wouldn’t be able to breathe for a few minutes. It increased day by day, hour by hour. I hurt when I was sitting, standing, sleeping, and working. I was always in pain. I lived like this until I was twenty-one. After four years of constant pain, I decided I needed to get help.

The first doctor I went to didn’t even look at the x-rays I’d taken for him. He checked my reflexes, and then he told me to get spinal injections. I didn’t feel that spinal injections would help. My body had gone from being slightly distorted to obviously leaning to the left. People could notice, and I was becoming very self-conscious about my body. I decided to do more research and look into top scoliosis doctors in the United States. During my search, I came across a doctor that really stuck out to me: Dr. Baron Lonner. Dr. Lonner sounded like such an amazing doctor! Not only does he perform spinal surgery in the United States, but he has also traveled to other countries to help scoliosis patients who don’t have access to proper care or who have their spinal surgeries performed in terrible conditions. One story that stuck out to me was when Dr. Lonner traveled to Ghana and performed eighteen surgeries in four days! I was amazing! I figured if this doctor could operate in terrible conditions and still have an amazing success rate, then this doctor would be exactly who I wanted to take a look at my spine and make a final decision on my scoliosis treatment. I needed to see him! I made the three hour trip to New York City, and my mom met me there to go to my appointment with me. We were called into the office before I could even finish my paperwork. Dr. Lonner’s staff was so friendly, so well organized, and each person in the office had a role to play in making sure everything ran smoothly. When Dr. Lonner came in, he was very kind to me. He looked at my x-rays, took measurements, and ran tests. My curve had increased from thirty-one to forty-four degrees, and I needed surgery. Luckily, Dr. Lonner spent nearly two hours with me, and he told me about the surgery. I think my mom and I both must have looked like basket cases. I had sweat dripping off of me because I was so nervous, but Dr. Lonner made me feel so much better when he said these words, which I will remember for the rest of my life. He said, “When I’m doing your surgery, I think of you ask my little sister.” It brings chills to my (now bionic) spine when I think about what he said! I just knew that he and his team were going to take care of me. So, my surgery was scheduled for December 5th, only twenty-one days after my first appointment.

On December 4th, I met my mom in New York City because I had to arrive for my surgery at 6:00 the next morning. My mom got a hotel room for us, and we spent the day before my surgery having a ton of fun. We went to Times Square, Rockefeller Center, and Central Park. We went out and had our very first drink together. We took pictures with Abercrombie and Fitch models and with a gigantic Christmas tree. We went shopping for chocolate at Godiva, and we pet the horses in Central Park. It was really the best day ever! The night before my surgery, I showered and wiped myself down with the antiseptic wipes I was given by the hospital. I got more and more nervous as time went on, but eventually fell asleep. We woke up at 4:30, hailed a cab and went to NYU Hospital for Joint Disease. After checking in, I was taken to a room where I was told to put all my belongings in a bag and then put on a blue robe and compression stockings. More blood work was done, and then we waited for Dr. Lonner to arrive. My mom kept trying to cheer me up by blowing up rubber gloves and making jokes, but I was too nervous to think of anything. While we were waiting, a lot of nurses and doctors began arriving, and I remember saying to my mom that I hoped they weren’t all there for me, but they were. At least fifteen people must have come over, one by one, to introduce themselves, and then I was brought into what I think was the operating room. A few more doctors introduced themselves to me and promised that they would take care of me. I was given a shot of something that I was told would help calm me down, and as the anesthesiologists were talking to me, I fell asleep.

I woke up in a new room. It seemed like only five minutes had passed, but really over five hours had gone by. A nurse was explaining to me how to press the PCA button to release morphine every five minutes, but I was so groggy that she had to keep reminding me to press my button. I had so many instruments and things connected to me. There were tubes up my nose, tubes coming out of my back (and pretty much everywhere else), and there were things squeezing my arms and legs. I don’t remember much from the first few days after my surgery, but I do remember seeing my mom and her friend Judy visiting me in the recovery room. I remember being moved from the recovery room to the ICU, and that was not fun at all. I remember my mom staying with me from 4:30 in the morning until 10:00 at night every day, and I remember feeling so grateful that she could be there with me! I remember having bad muscle spasms that the nurses could see through my gown. I remember being in a great deal of pain, but my blood pressure dropped to lower than 70/20, so I had to have my pain pump taken away and three blood transfusions. I was screaming in pain so much that I would stop breathing, and that was the scariest thing I can remember.

The rest of my recovery went much better. I was a day late getting on my feet, but once I got up and started moving, I started to feel better. I do remember the first painful steps. I didn’t even think I could sit up, but once I did, I walked a few steps and then sat in a chair. My mom started crying, and she told me how amazing it was to see me sitting up straight for the first time ever. On the fourth day I walked with a walker, and then I walked holding my mom’s hand as we went around the nurses’ station. This also brought tears to my mom’s eyes. After five days in the hospital, three of them being in the ICU, I made the long trip to South Jersey where I spent six weeks with my mom while she took care of me. My mom helped me shower, eat, move, and she gave me my medications every couple of hours. (She even used a spreadsheet that she made to track what I was taking and when I was taking it.) A nurse and a physical therapist visited me every day, and they were absolutely wonderful. They helped me begin walking with crutches, and within a few weeks, I was walking on my own.

At my first follow-up appointment, which was four weeks after my surgery, Dr. Lonner showed me the x-ray of my spine. It had been straightened to only a six degree curve! I grew almost two inches in height, and now my body is perfectly straight! At two months post-op, I am feeling great. I can pretty much do everything I was able to do before my surgery (with a few limitations for a little while longer, of course). It was a long, hard recovery, but I am so happy that I had this surgery! My scar stretches down half of my back since I am fused from T11—L3, but hey, I am okay with that. As Harry Crews says, “There is something beautiful about all scars of whatever nature. A scar means the hurt is over.”