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Patient Stories

Emily Bloomfield

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.

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Elizabeth Conklin

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!

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Deanne Vitiello

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!

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Courtney Rone

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.”

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Courtney Burns

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!

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Caleigh Stednitz

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.

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Anna O’Connor

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.

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Andrea

My name is Andrea, and I am  44 years old.  I am a professional singer and voice teacher who was diagnosed with Scheuermann’s Kyphosis when I was thirteen years old.  I was already doing lots of performing at this age.  I had been criticized in auditions and told that I needed to stand straighter for several years prior to my diagnosis.  Of course, I wasn’t able to do this, and once I was diagnosed, I finally knew why.  My curvature was around sixty degrees.  I was treated with a Milwaukee back brace.  I wore my brace twenty-three hours per day for about one-and-a-half years.  I was only to take it off to shower and do my back exercises, and I followed this advice.  Next, I wore the brace at night for another year.  Now, I have excellent posture, and no one ever tells me to stand up straight anymore.  I never “cheated” on how much I wore the brace because I really wanted my back to be fixed, and it was! It is!

 

 

 

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Amanda Penna

 

Since I was a little girl in elementary school, I always had a hump on my back and pain like one couldn’t even imagine. At the time, being an ice skater and a softball player, I had really no patience for any kind of pain. As the years progressed and me going through my growth spur, the pain in my back rose so high to the point where it was a problem.

 

Being only thirteen and having to ice my back every chance I got or even having a difficult time sitting in chairs, was really annoying. Being an athlete, and now in middle school, the last thing on my mind was surgery. So I tried every possible thing to help shape my back to become normal. I went to a chiropractor, I did certain stretches, I went to physical therapy, and I was massaged a lot. Even though the pain went away for maybe an hour, it always seemed to come back. Even doing exercises didn’t do the trick, because every time I took a new X-RAY it always seemed to get worse and worse. See my scoliosis was different, I had it in the upper part of my back, and also a little in my lower back to add on the joy. As my back was becoming worse and worse, the pain was so bad I couldn’t even play my position in softball or I could barely complete my lay backspin while skating. It got to the point where I was in tears, so my mom took me to all sorts of doctors and I was hoping one of them would say, “oh you don’t need surgery your fine” or even “I will just give you a back brace.” Even though back braces aren’t the loveliest fashion accessories I was desperate for anything other than surgery. Since my main curve was in the upper half of my back though, the brace was useless.

 

With posture becoming unflattering and terrible ache everyday, I felt like an old lady with all my back issues. Finally, my parents found me an amazing doctor, Dr. Newton. Not only is he the best at his surgeries he was also the first doctor I actually felt comfortable with, which was my big thing. He told me I needed surgery, of course not the answer I wanted, but if I guess since so many doctors told me I needed it I just had to accept it. After I got use to the fact that I needed this, I was okay and finally truly believed in it. Since this is such a big surgery, I knew I was going to be absent from school for about a month and a week. So going into 8thgrade, I was nervous because I didn’t want to miss so much school. After the first week of school, I had to leave for surgery. After this point I just really wanted it over with, but wasn’t that nervous because I trusted Dr. Newton and his crew. I think my Dad and my friends were more nervous than I actually was. I remember, the weekend before my procedure, I had a softball tournament; I was pitching and just started crying on the mound. My whole back was numb and it hurt like no other, they had to pull me out of the game. I just remember that feeling of ache and hurt and I remember I never wanted to feel like that again, it got to the point where I had to go in the car and just sit there until my back felt workable again, it was not pleasurable at all.

 

The day before my surgery, my friends threw me a going away party, since I was going to be away for a while. After everyone was leaving, I just started crying, and most them did too. They were scared they were going to loose me, and then they got me scared! I didn’t want to leave any of them, but that was probably the most loved filled night that I ever had. I felt so blessed to have these girls and boys bring me things to make me feel better while home and just all the cards and notes really cheered me up.

 

The next day came, and it was surgery time. I just remember being so tired because it was so dang early! I got to Rady’s Children’s Hospital, and I felt scared but ready for my spine to be better. Now in my hospital gown and now asked to leave my parents, I was getting pretty nervous, I didn’t want to let go of my Mom nor Dad, but finally had to. When I walked into the cold surgery room there were so many doctors in there, it made me feel better that many doctors were there though to make sure I was okay, and monitoring me while I was going to be under. They put the anesthesia in me and then I went to sleep. About five hours later, I was awake in my hospital room. I was so happy now that I know it was over and done with and I eventually gained my confidence back.

 

Before surgery my curve was seventy-eight degrees and now it’s about eighteen. I grew three inches from my surgery, and now being sixteen I am five foot eleven inches. Being a sophomore in High School, I am on the girl’s varsity softball team still pitching and playing on first base. While I pitch too, there is no pain!! I quit ice-skating after my surgery just because I wasn’t interested in it anymore. My ability to play softball has improved, just from not having to stop and ice anymore. My back is healthy and it makes me feel normal. I can sit in school desks without being uncomfortable. If I had to do this surgery again I would, it changed my life for the better. I am just so happy I never would have to go back to the pain and misery I was once was in, plus I have a gnarly scar along my spine, which is cool. My life has been going so well, and my back hasn’t been in the way like it once was. I am very happy with my results and I’m back to being a normal teenager. Probably surgery was the best decision of my life, without it I don’t know how I would be still functioning.  Thank you Dr. Newton and Nurse Amy, you guys really saved me.

 

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Amanda K

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!

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