619-810-1430
info@ssshsg.org

Patient Stories

Tara Vasi

I was diagnosed with scoliosis in 6th grade during a routine annual check in the locker room during gym class. I didn’t know what was going on at the time or what the gym teacher was looking for, but when she tapped me on the shoulder and told me to come with her, I knew something was wrong. There were a few other girls that got tapped on the shoulder too, but we were taken to different rooms, and I never saw them again.

My parents took immediate action. My mom made an appointment to get an x-ray at Children’s Hospital in Boston. I still didn’t really understand what the visits up to Boston meant. We usually only went up there for special events, to eat clam chowder at Fanuel Hall, or that time we flew to Disney Land.

I didn’t understand why the doctor put a plastic photo with a squiggly line on the lit up board, or the constant need to wear that itchy backwards dress and bend forward to touch my toes. What I did understand was that while we were in Boston for these doctor visits, we always went to the Cheesecake Factory and at that age, I would pretty much do anything for a slice of cheesecake.

I stopped being excited about the post cheesecake slice when I was introduced to the brace. They told me the brace would fix my spine, or at least stop the curve from getting worse, while I finished my growth spurt. Even as this symbol of straightened hope, I quickly learned to hate the brace more then anything in the world. It was tight, hot and uncomfortable. I even started to not like cheesecake.
I was supposed to wear it as much as possible, to school, to bed, etc. I resisted full throttle and this caused friction between my parents and me, even more so then the typical adolescent/parent fights about makeup, clothes, bedtimes, and extra curricular activities. It even caused more friction between my parents.

They wanted me to wear it to school! I pleaded with them to not make me wear it to school. Did they not remember the opening scenes of Forest Gump?

I wore it to school one day. One day. A kid knocked into me. He literally knocked. I was so embarrassed about having to walk around like a zombie is a corset. I began to ditch it at the bus stop behind the “Welcome to Pine Ridge Estates” sign before getting on the bus to school and then putting it back one before I walked home from school.

I had no one to talk to about my dilemma. I felt like I was forced to lie to my parents.  Didn’t they know how painful the brace was? How painful middle school was? Did they think I was just being a whiney brat and making it all up? I needed someone to help them understand what I was really going in my body, heart, and mind.

I wonder if the brace would have corrected my curve slightly, had I actually listened to the doctors, and my parents, and wore the brace for the recommended amount of time each day. I wonder if I had had someone to talk to, a confidant, or someone who had been through it before, if I would have resisted the brace less.

I didn’t want to have a crooked back, but I was a kid and this ‘curved back thing’ didn’t feel like something a kid should have to go through. I didn’t think about the long term. I just wanted to be accepted. To be cool. To ride my bike and play soccer. No one else seemed to need a brace. It felt like I was the only one going through adolescence with a spine issues.

We went to a physical therapist for alternatives to the brace. She gave me a list of exercises to do every day, including Cat/Cow, spinal flexion and extension, seated side stretches, or lateral extension. I usually did my exercises while watching reruns of Seinfeld with my Dad.

The results of doing the exercises were amazing. I slept better and had less back pain during day-to-day life. The brace didn’t work for me, but this did. It was like a miracle.

Since then I have devoted myself to yoga. The practice helps with my body’s compensation act for the curve that exists, resulting in less pain and better posture. Choosing yoga also creates inner awareness, empowerment, and acceptance that has improved my overall quality of life. I love sharing the gift of yoga with others and hope that by giving back to the community, I can give young girls everywhere hope that you can still lead an awesome, fulfilling and happy life with a curved spine.

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Robert Savich

Detroit Marathon 26.2 Mile

I have scoliosis that started in middle school and grew to an 85% curvature by the end of high school.  I had a total of four major back surgeries, fusions—with rods and all.  The last surgery removed all of my hardware, as the initial fusions held.

It was difficult to stay very positive in those days, but I always did.  I was always a popular guy.  I never showed any weakness, and people didn’t ask about my scoliosis.   Still, it was always on my mind.

My back is still twisted, but I stay confident, and I don’t complain when it gets uncomfortable.  In fact, I never did.  Even after surgery I would not take much of the pain medicine, as I didn’t want to get addicted to it.

My experience with scoliosis has definitely made me stronger.  I am now thirty years old.  In the past year, I got married to my amazing wife, Kristina, and we are now the proud parents to a healthy boy named Marko.  He reminds me of myself when I look at him.  We are both healthy!

I am currently training to run the Detroit Free Press International Marathon on October 18th of 2015. That’s right!  You read correctly…26.2 miles!

When I run, I will be running for those who struggle with scoliosis and for my son Marko!  I had a very severe case of scoliosis, but I knocked it out, and you can too if you stay strong!

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Rachel Johnson

When I was fourteen years old, I was blindsided by a diagnosis of scoliosis. I was suddenly faced with the reality of having a severe curve in my spine that could only be corrected by spinal fusion surgery. I had been a passionate dancer since I was three years old, and I had no idea what my diagnosis meant for my future. What would my dancing look like after surgery? No one could tell me for certain, and that’s what scared me the most.

Following my diagnosis, my family and I began the process of searching for a surgeon. After appointments with a few doctors, we went to Nemours duPont Hospital for Children in Wilmington, Delaware and met with Dr. Suken Shah. As soon as we started talking, I knew he was the right doctor for me. After meeting Dr. Shah, everything went into fast motion. Before I knew it, the date of the surgery was set, and it was constantly looming in my thoughts. The day seemed to approach at an exponentially rapid speed, and by the time it arrived, I was absolutely terrified.

On July 6, 2011, I had spinal fusion surgery. Despite all my fears, the five-hour procedure went perfectly. Looking back, I couldn’t have asked for a better surgeon. During my five days in the hospital, I set my mind on recovery. I knew the worst was over, and all I had to do now was work towards getting my body back into shape.

The five-month recovery process was undeniably one of the hardest things I have ever undergone in my life, but it has completely shaped me into the person I am today. Slowly but surely, I got my body back to where it had been pre-surgery. The road was long and the journey was hard, but I now dance at a level that I never thought would be possible with two pounds of hardware in my back.

This entire experience has strengthened more than just my spine. I have learned so much about myself and discovered a confidence I never knew I had. This entire experience was an inspiration to me, so I decided to do my senior graduation project on my surgery. I made a video featuring myself, two of the girls I have mentored, and my surgeon, in which we all discuss scoliosis and how far it is possible to come after surgery. This video continues to make me smile every time I watch it.

Still, the most rewarding part of this entire experience came at my one-month post-op appointment. Dr. Shah asked me to mentor a girl from Bermuda who was about to have the same surgery I’d just had. One thing led to another, and I have now had the opportunity of mentoring several girls facing spinal fusion surgery. It has been incredible to be able to impact these girls’ lives so directly.

If someone had told me three years ago how much this surgery would change my life for the better, I never would have believed it. It is now clear, however, that it has been the best thing to ever happen to me, and I would not trade a second of this experience for any other.

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Nordirjon Sobirov

Nearly four years ago, Nodirjon Sobirov underwent surgery with Dr. Baron Lonner, a member of the Setting Scoliosis Straight Foundation, in order to correct his severe case of scoliosis. Nodirjon, a teenage immigrant from Uzbekistan, was interviewed by the New York Daily News in 2009, six months after his surgery.

Here is an excerpt from the article:

Six months after the lengthy surgery that could have paralyzed him, the once-shy Brooklyn high school student is shooting hoops, swimming laps and making friends.

“Before, I didn’t want to play with people,” Nodirjon said Saturday.”My back was crooked. I was embarrassed. Now I’m feeling great.” The 15-year-old came to New York with his family in 2007 after his mother won a green card lottery. Doctors in his homeland had delayed any back surgery, treating him instead with ineffective massages. The boy’s father, Akmal Kasimov. Said, “My son’s life has been returned to him.” Nodirjon’s spine was bent at a 130-degree angle, leaving him permanently hunched and crippling his lungs. By the time of the Oct. 29th surgery, he was gasping for air and turning blue. During the operation, the surgery team removed vertebrae from the boy’s spine and painstakingly reassembled it. For Nodirjon, the wait was worth it. The surgery, in addition to likely extending his lifespan, has increased his height by 3-1/2 inches. The Fort Hamilton High School freshman’s self-confidence grew even more. “Before the surgery, I didn’t like to go out,” the teen said. “I wore a jacket outside, even when it was warm. I didn’t want to show my back to anyone.”

Now, almost four years after his surgery, Nodirjon is still doing well, saying “I’m happy, I’m comfortable and I go out all the time now. I don’t feel any pain in my back, even when I work out every week.” Nodirjon graduated from high school this year, and he says that it has been a tough road with many difficulties along the way. Nodirjon’s experiences with scoliosis in-spired him to volunteer at a local nursing home in high school, where he assisted doc-tors and patients in his free time. Currently Nodirjon is looking forward to enrolling in a local college this fall, with the hopes of completing his bachelor’s degree in premedical sciences. Nodirjon says, “I had some hard times in my life, and I’ve seen how the doctor helped so many sick people, so I want to become a doctor.” Now that his back is straight and he feels his best, he says he knows he can accomplish anything.

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Melany Rivera


READ MORE PATIENT STORY

Read more patient stories like this from around the world.

Read more

Lisa Tran

My name is Lisa, and I am currently 26 years old. I was diagnosed with scoliosis when I was in middle school during a physical in P.E. I was unfamiliar with the condition, and it was all very frightening for me. Initially, I was referred to Dr. Peter Newton at Rady Children’s Hospital and was fitted for a brace that I was supposed to wear twenty-three hours a day. I tried my best for a year, but it eventually became so uncomfortable, and I felt so self-conscious that I stopped wearing the brace to school. I had surgery in October of 2000, just one month into my freshman year of high school. The immediate days following surgery were a struggle. I was very dependent on my family and had to relearn simple tasks like walking and sitting up. Slowly but surely, I was able to move about freely with some limited physical activity. It was a journey.


I am very grateful to have had such an awesome experience with the doctors and nurses at Rady Children’s Hospital. Throughout the years they have continued to stay in contact with me and have really helped me become the confident person that I am today. Years following my surgery, I do not feel limited to any physical activity. I have gone parasailing, zip-lining, kayaking, snorkeling, snowboarding, and have even sky dived. Today, I am on a new and exciting career path. I am studying to become a Radiologic Technologist and am doing my first clinical rotation at Rady Children’s Hospital. Now, instead of being the patient with scoliosis getting her x-rays taken, I do x-ray exams on patients who have scoliosis! It has been so amazing to be able to experience the other side of this process. Eleven years following my surgery, I cannot imagine how my life would be had I not had it.

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Lindsay Gordon

Strut for Scoliosi

Scoliosis has led me down a curvy path with many ups and downs, but Dr. Jack Flynn, at Shriners Children’s Hospital in Philadelphia, constantly reminded me, “You are running a marathon, not a race.” This line has always resonated with me in times of despair. Although it has been tough to preserve, I won the battle against my spine.

In 2011, I was diagnosed with adolescent idiopathic scoliosis. My curves were close to the extreme range and therefore required bracing. During this time, I was always on edge as my endurance was necessary. Still, going in, I was not fully aware of the difficulty and motivation required to wear a brace. I struggled to adjust my life around wearing this back brace for twenty hours each day for three years, but my curves did not progress into surgery range. Like I said, I won the battle against my spine!

As my personal journey concluded, I have become keen on making a difference for patients like myself. I have integrated my love for fashion, my enthusiasm for service, and my curiosity in business as a way to give back. I have designed an “athleisure” wear line with all the proceeds being donated to Setting Scoliosis Straight. The theme of my active wear promotes exercise for anyone running marathon or even a race. This trendy and unique line, Strut for Scoliosis, can be worn by everyone everywhere. I aspire to spread national and even global awareness about this deformity, as well as raise the funds needed to eradicate it. I hope to brighten the future of my fellow patients and see you all strutting. Let’s Strut for Scoliosis!

SHOP NOW!

Visit Lindsay’s online store and purchase her line of clothing.

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Lena Chesnut

Lena was diagnosed with Idiopathic Scoliosis at age seven. In 2010, Lena’s curve had progressed to a 52 degree curve, and she needed urgent surgical intervention. On her fourteenth birthday, Lena was released from Rady’s Children’s Hospital. Her surgery was a complete success and she even appeared in our Scoliosis Handbook.

Lena readily recalls how kind all of her nurses were, and she was very impressed with the level of care they provided to her during her stay at the hospital. Her mom, Theresa, took a week off of work to stay with her in the hospital every day and night. Although the time surrounding Lena’s surgery was very stressful for Lena and her friends and family, everyone in her life fully supported her during her surgery and the recovery process.

Spinal fusion surgery positively changed Lena’s life in many ways. Lena knows how important it was to have so many supportive people in her life during such a difficult time. Although she is a seventeen-year-old senior at Poway High School, who is active in track and is still busy figuring out teenage life, Lena has already begun looking for ways to give back to others. She currently volunteers once a week at Setting Scoliosis Straight. Lena is also planning to become a pediatric nurse so she can work with children, assisting with their health and providing them comfort in their time of need.

Setting Scoliosis Straight is very grateful to Lena and all she has given us, and we look forward to all she will do in the future. We are confident that, whatever it is, it will be great!

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Leah Humes

I, like many others, was completed blindsided by my scoliosis diagnosis in 2012. I have always been a very active person and have competed on sports teams since the age of four. I started developing fairly severe back pain at the age of 15, but never thought too much of it. At that time, I was playing AAA soccer and basketball, in addition to representing my Montreal high school team in soccer, basketball, and flag football. During my senior year in high school, I decided that I wanted to start exploring American Prep Schools since I wanted a new academic and athletic challenge. After many different school visits in Massachusetts and New Hampshire, I was admitted to a great independent boarding school. During my two years in Massachusetts, I continued to struggle with what became more severe back pain. It wasn’t until the spring of 2012 that I finally went to the hospital for X-Rays, and I was devastated by the results. I had a 45 degree curvature and had to seriously consider surgery if I wanted to live comfortably and attempt to keep competing athletically.


At this point, I had been accepted to a Division III American College and was looking forward to playing on the university’s soccer and basketball teams. In Montreal, I worked with Dr. Parent and his team at the Sainte-Justine Hospital. Everyone was exceptional throughout this entire process. They were able to schedule surgery for July of that year, but that meant that I would be out for my first year of college athletics. I was far from excited about this news. However, Dr. Parent and my dad reminded me to consider my options: take a year off for surgery or risk not being able to continue my athletic career at all due to severe pain. The thought of never being able to play competitively again scared me, and that’s when I decided that I wanted to go through with the surgery.

Deciding to have surgery was a very hard decision. The surgery alone frightened me. I couldn’t help but worry that the surgery could go wrong, my athletic career could come to an end, or that I may not recover properly post-surgery. Well, all of those worries were for nothing. I was fortunate to have an amazing doctor who successfully completed the surgery (to no surprise) and helped me get back to playing collegiate soccer and basketball within the year. It would be a lie to say that the recovery was easy, but every day was an improvement, and that was encouraging.

Today, I am happy to say that I recovered tremendously well and became a better and stronger athlete after my surgery. I no longer suffer from back pain. I was able to train and compete with my teammates and feel physically better about my body. At the College level, I was able to become an impact player on my soccer team for three years, and I had the honor of captaining my team during my senior year. I was also honored to receive the MVP award!

Going through with this surgery was one of the best, yet scariest decisions I have ever had to make. That said, I am forever grateful for the decision I made and for the amazing team that I had supporting me from day one. I am healthy, happy, active, and stronger than ever. A big thank you to Dr. Parent and the Sainte-Justine Team in Montreal!

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more

Lea Kundicevic

My long journey with scoliosis started seven years ago, when I was just ten years old. I was taking a yoga class when my teacher unexpectedly noticed that my back was uneven. Little did I know that this simple observation was actually the beginning of what would become a very emotional and life-shaping experience. After a year or so of appointments with different doctors, I went to BC Children’s Hospital, where I met Dr. Miyanji and saw an x-ray of my curved spine. What I found out was shocking: my curve had reached over fifty degrees, which meant I needed to get surgery. Two years later, my curve had increased to ninety-six degrees, and I then found myself in the hospital, eager to get the first of my two surgeries done.

Both surgeries were successfully completed. I couldn’t believe my eyes when I saw my final x-rays and my upper curve was reduced to just seven degrees! Dr. Miyanji and his team made a miracle happen, and they were helped by the kind staff and nurses who took care of me during my recovery in the hospital. They all changed my life in every possible aspect. By the time I went home, I felt fearless and ready to take on this healthy life lying ahead of me! The first test came when my staples were removed – I was dreading this moment. However, they were removed with ease, and I couldn’t feel it at all. They actually left the most amazing scar on my back. That scar is the proof that I have fought for what I truly wanted.

Two months after my surgery, my energy was completely back. I went back to school and was no longer worried about how people saw me when they looked at me from the back. I continued writing and sharing photos on my fashion blog. I shared my before and after x-rays and told my story to my readers. I think my story has touched many people. I owe my life to Dr. Miyanji and the rest of my family at BC Children’s. These past two years have been filled with so much happiness and success; I cannot wait to see what the future holds for me. My surgery was the start to the incredible life I am now living.

Where is she now?

It has been two years since Lea had a two stage surgery to correct her scoliosis. She is happy, healthy, and proud of her where her journey with scoliosis has led her. Lea is a writer, fashion guru and stylist. She has appeared in Italian Vogue, and is now pursing fashion school in South America. We wish her all the best in all of her endeavors. Thank you for sharing your story with us, Lea!

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.

Read more