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Patient Stories

Alyssa Burns

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.”

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Guada Guitierrez

“Hope is Everything in Scoliosis!”

Guadalupe is four years old, and like many little girls her age, she enjoys singing and goofing around with her sisters. But Guadalupe has a little secret…she’s not your average toddler. She’s actually a superhero with secret superpowers, including the ability to vanquish fear, leaving in its place courage and uncontrollable laughter.

These powers have come in very handy over the years, as Guadalupe was born with a severe case of scoliosis (within the top 10% in complexity). Although tiny, she has fought her way through several surgeries without which her heart, lungs, and life would be in jeopardy. In light of her age, size, and the complexity of her case, she traveled from her hometown in Mexico to pursue treatment in the United States where the technology she needed was available. Under the care and guidance of Setting Scoliosis Straight President and chief of the division of Orthopedics & Scoliosis at Rady Children’s Hospital—San Diego, Dr. Peter Newton, Guadalupe continues to be a light of inspiration for the scoliosis community, her friends, and her family.

Although Guadalupe’s life has not been easy, and the road ahead will surely have its challenges, her innate ability to see goodness and joy at every turn and in every person she meets is something we can all learn a thing or two from.

Her organization, Juntos Por Guada, began as a means to raise money for Guadalupe’s treatment and expenses. Today, Juntos Por Guada has been instrumental in helping fundraise for families throughout Mexico with similar medical challenges. It is community support like this that remains an invaluable lifeline for many.

Setting Scoliosis Straight and Juntos Por Guada are excited to launch a special partnership with hopes of strengthening global support for pediatric spine research, especially in countries in Central and Latin America where scoliosis funding, technology, and treatments remain insubstantial.

To learn a little more about Guadalupe, or Guada as she is sometimes known, we held a Q & A session with her family to get to the bottom of exactly how special this young girl is!

The Gutierrez Family Q & A

What made you want to participate in the Setting Scoliosis Straight Giving Tuesday photo challenge? [#GivingTuesday is a global day of giving driven by social media and community collaboration.]

Participating in the Giving Tuesday photo challenge was a way to be involved and actively participate in this great community. Scoliosis in certain childhood stages can be rather uncommon, and it’s great to hear experiences from other patients. Also, we truly believe Guadalupe is an enthusiastic girl who enjoys sharing experiences!

What has been the hardest part of your family’s scoliosis journey, & what has been the best part?

Unlike many other children being treated with scoliosis at Rady Children’s Hospital in San Diego, Guadalupe is Mexican, and we used to live in Mexico City. Unfortunately, Mexico does not have the required technology to treat scoliosis in early stages of life. Relocating to San Diego, with Guadalupe and her two sisters, was a special challenge. Then, our first experience with the initial back surgery was particularly challenging because Guadalupe had to stay in the ICU for fifteen days, and she was only two years old. But, she made it through!

In what ways has hope been necessary & helped get you through Guadalupe’s diagnosis & treatment of scoliosis?

Hope is everything in scoliosis. Hope and patience. Scoliosis is a particular kind of marathon, and you never know where the road is going. Your next curve might be uphill or downhill. It may rain. Scoliosis really pushes your spirit to submit to whatever is required, to adapt your life, and that of the family’s, to one single purpose: your kid’s health. In our case, faith in Dr. Newton and in his team’s expertise, helped.

What do you hope to inspire in others?

There are two main things that form Guadalupe’s personality: attitude and character. Guadalupe’s acceptance and positive spirit towards her own difficulties have surprised many. She has the ability to see beautiful things even in the most difficult circumstances. During our fourth week in the hospital, with Guadalupe in halo traction, at her request we would walk down a particular hallway because she liked the purple color of the floor. Guadalupe can surprise you. The small details that make her day make our lives happy.

If you were to share a message with another child or family currently struggling with scoliosis, what would be your message of hope?

Be strong, and be brave. Children with scoliosis are born with a strong character, and they are capable of dealing with difficulties. Parents should rather focus in facing the problem as it is and look to the bright side of scoliosis. Scoliosis is also a kind of blessing that may allow you to appreciate other things in life. It can help you put things into perspective and see that many of what we call “problems” or “difficulties” are really not such things when you face health difficulties. Knowing this may allow you to have a positive attitude toward your own life.

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Lindsay Ellingson

Setting Scoliosis Straight Very First Celebrity Spokesperson

Lindsay Ellingson has held a lot of titles. She has been a gymnast, a dancer, the top-of-her-class student, a Victoria’s Secret Angel, an entrepreneur, and a patient with scoliosis. Now, Lindsay Ellingson is adding the title of Setting Scoliosis Straight Celebrity Spokesperson to her brimming repertoire. We couldn’t be happier with her decision, and we think you’ll feel the same once you get to know her!

In so many ways, Lindsay represents every patient with scoliosis. Her dreams suddenly came to a halt when she received her diagnosis. She was afraid. She pressed on. She walked two treatment paths. She was braced, and she was fused. Then, she was given the sky as her limit and went on to achieve great success. At 18 years post-op, Lindsay is ready to give back. After four years of searching for an SSS spokesperson, we’re so excited to have finally found her!

Read Lindsay’s Story!

Gymnastics was all I could think about in 4th grade. I begged my parents to let me take classes. They watched me cartwheel around the house and make my own balance beam out of blankets. Then I begged some more. They quickly realized how serious I was and finally agreed. I would get to take gymnastics!

I loved challenging my body and mind to move in different ways. The gymnastics workouts were fun and intense. Within just a few months, I had achieved my first back handspring without a spotter. The rush and excitement of completing a new challenge motivated me to do more. I was strong and flexible, and my coaches were amazed at the ways my back could bend. I loved every second of practice. Around 5th grade is when my memories of gymnastics start to fade away. The last thing I recall is cooling down at the end of a class. As my coach pressed my hips deeper into a stretch, he noticed something strange and called my mom over. That’s when I heard the word scoliosis for the first time. My coach pointed out that the muscles on the lower left side of my back were raised compared to the left, and he said. I needed to see a doctor right away.

It all happened so fast. In March 1996, almost at the end of 5th grade, x-rays revealed that I had a thoracic curve from T5 to T11 measuring 25 degrees and a thoracolumbar curve from T12 to L4 measuring 35 degrees. I was diagnosed with adolescent idiopathic scoliosis, meaning that my spine was shaped like an S and there was no known cause. I hadn’t noticed any abnormality before my coach pointed it out, and I wasn’t experiencing any pain. I was fit for a brace which I was told to wear for 23 ½ hours a day. This meant no more gymnastics. My heart sank.

The brace I wore was made of thick plastic, and I was always hot wearing it since I grew up in the desert in California. It fit tightly around my stomach and closed in the back with leather buckles in an attempt to straighten my spine. My half hour showers, the only time I didn’t have to wear my brace, were the highlight of my day. I remember wanting to hide my brace from the other kids at school. I was so embarrassed. It didn’t help that I was painfully shy and didn’t have many friends to support me through this difficult time. My mom took me shopping to buy large t-shirts in an attempt to cover up the brace. If I slouched at all, the brace would poke out of my back like wings– wings that were not nearly as glamorous as the ones I would later wear on the Victoria’s Secret runway. I settled into my new life and was very diligent about wearing the brace as directed by my doctor. As uncomfortable, hot, and claustrophobic as the brace may have been, my health was my top priority and was ultimately more important than gymnastics. In 6th grade, however, I tried out for and made the dance team. By that time, the brace was almost a part of me.

Unfortunately, the brace didn’t stop my curves from growing. I was x-rayed every six months. At each doctor’s visit, I felt my stomach drop and the room spin as I heard the news that my scoliosis was progressing despite the brace. By the time I was in 7th grade, I developed hypokyphosis; my thoracic curve had progressed to 54 degrees, while the thoracolumbar curve was up to 57 degrees. Surgery was recommended.

My surgery was scheduled for July 30th. I was filled with fear and worry. I researched spinal fusion surgery and read other patients’ stories online. I was encouraged by their testimonials to think positively and to visualize myself as healthy and vibrant after surgery. I also read about the importance of being in great physical shape before surgery. I jogged around my neighborhood to build endurance and clear my mind. I made sure I practiced my positive affirmations.

My family and I decided to seek an experienced surgeon in Los Angeles to perform my operation. I met my orthopedic surgeon a few months before surgery. He was later described to me as a legend in the field of pediatric scoliosis surgery. Needless to say, I am incredibly fortunate to have such loving parents who found the best possible care for me. During my first office visit, the doctor, who had a gentle demeanor and wore silly ties, showed me a photo album of his patients after surgery. They were mountain biking, water skiing, golfing, and dancing! He reassured me that spinal fusion surgery wouldn’t prevent me from having a normal and active life.

On the day of my surgery, I was surrounded in the waiting room by my parents, my grandmother, and my two sisters. In an instant, the reality of the situation hit me. I was scared. My family all over the country and people at my church were all praying for me, which gave me strength. After a nurse gave me some medication, I started feeling more and more relaxed and then my memory faded away.

According to the journal that my mom kept during my hospital stay, the surgery took a total of seven hours. She wrote about a funny episode that happened as the staff wheeled me out of the OR. Despite my eyes being swollen shut from laying on my stomach for so long, I waved to everyone while simultaneously fighting with the nurse to take off the oxygen mask. These moments of humor helped my family cope. I feel like it was harder for them to see me go through such a major surgery than it was on me. I remember waking up in the ICU with my mom by my side. My eyes were so puffy that it was difficult to see her, but I felt so much better with her there. The nurses came into my room frequently to check on me and to turn me onto my side. The next morning a nurse brought in a tear shaped stuffed animal with a pain scale of 0—10 on the front. She asked me to point to a number. I remember pointing to zero.

I was in the hospital for one week and received excellent care from the nurses. There were difficult times though. For the first few days, I felt nauseated and vomited when I tried to sit up. On day two, I had to receive a blood transfusion, since I had lost a lot of blood during surgery. Sitting up was painful, but standing up was even more difficult. It was a proud moment when I could finally stand, and I had grown an inch and a half! I was told that I could go home when I could walk well. I worked with a physical therapist, often times pushing my limits in order to walk faster and to climb stairs. Although I felt physically weak, something in my mind had changed. I was determined to get better and to get back on the dance floor.

I was finally released from the hospital with armfuls of flowers and stuffed animals. My recovery left me feeling inspired and elated. I knew that if I could overcome a major surgery, then I could do anything. Despite some restrictions, I returned to dance practice once the school year started. I continued dancing competitively through my freshman year of college. My surgeon was right. Spinal fusion surgery didn’t limit me physically at all. In fact, it made me stronger both physically and mentally. I set my mind towards several goals, including graduating in the top ten of my high school class and attending UCSD as a biology major with the hope of becoming a doctor or medical researcher. These were great goals, but another door opened.

About ten years ago, I was scouted by a modeling agent and within a few months had moved to Paris to work as a fashion model. I’ve since walked in hundreds of fashion shows, been on numerous magazine covers, and have been featured in campaigns for Dolce Gabbana, Tommy Hilfiger, Victoria’s Secret, and more. In 2007, my dream of walking in the Victoria’s Secret Fashion show became a reality. I walked in the show eight times and had the honor of carrying some of the heaviest wings in the show. I have also participated in 50 mile bike rides to raise money for cancer research, I do yoga almost every day, and I still take dance classes. Most people have no idea that I have two metal rods in my back, especially since this is the first time that I’m telling my story!

Despite all of my success, the accomplishment that I’m most proud of is the scar on my back. Enduring bracing and spinal fusion surgery helped me develop a depth of character that has convinced me that I can do anything that I set my mind to. I have held a lot of titles in my lifetime, and I recently co-founded a line of cosmetics called Wander Beauty, adding entrepreneur to my list of titles. Starting a company is an exciting new challenge for me, one that I’m more than ready to take on. However, the title that I most want to obtain is that of messenger. My goal is to let every child who is facing scoliosis treatment or surgery know that they are incredibly special and will go on to do amazing things. My message is for you to stay strong and positive. If a shy, awkward teenage girl from the desert can get through this and thrive, so can you!

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