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Patient Stories

Courtney & Heidi Rone

Watch this interview video from Courtney and her mother Heidi talk about their experience with scoliosis and Power Over Scoliosis events.

Thank you Courtney and Heidi for all you do for the Setting Scoliosis Straight Foundation!

To read more about Courtney’s journey with scoliosis, Click Here!

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Tanya Krueger

Watch this inspirational video from Tanya Krueger and learn how she didn’t let scoliosis take over her life!

Thank you Tanya for sharing your incredible journey with the Setting Scoliosis Straight Foundation community!

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Sophia Perez

My name is Sophia Perez and I had spinal fusion surgery on June 13, 2018. I’d like to say my life changed that day. I was diagnosed when I went for a well check up at the age of 8 with my pediatrician, Dr. Mark Ginsburg. I went for an x-ray, and it was confirmed that I had scoliosis. I didn’t know what that meant, but I do remember my mother’s look of concern. I thought I had something similar to a cold and it would eventually go away. Little did I know that this would never be the story. My mother took me to Nicklaus Children’s hospital to see a specialist and that is when I met Dr. Harry Shufflebarger. I’d like to say that he is the best doctor any one could have!

Dr. Shufflebarger advised us that I would need to be monitored every year with an x-ray. I was cool with that, and continued my life as an elementary school kid and swimming, which was my passion. It was like that until the summer before I entered 5th grade, a few months before my 10th birthday that in my yearly routine check-up my degrees had changed past the 25 degrees. This meant bracing. I was terrified at the thought that I had to wear a plastic brace that covered me from just under my shoulder to my hip area. I cried all the way home. I would wear this brace for 10 to 12 hours in the evening. I hid this from my friends, I stopped sleepovers and only a select few were able to see me with my brace. Every travel swim met, I’d have to bring my brace with me, and I made sure no one saw this plastic thing I learned to hate. As my next two years progressed, so did the amount of time I had to wear my brace. I hated the sticky feeling of having to wear this brace, especially in the hot Florida weather. I developed rashes, and the sweating under the brace made me hate it even more. I also started doing concave exercises and visiting a chiropractor to see if my progression would slow down. Nothing worked and my visits went from yearly, to every six months to every 3 months. This really scared me! The thought of avoiding surgery was looking more and more grim. The only bright light for me was that my swimming had taken off, and it was the only thing that kept me positive and going. 

October 3rd, 2017 I had a checkup with Dr. Shufflebarger. I had a routine: go in, get the x-ray, see Dr. Shufflebarger, degrees went up slightly, come back in three months. This was not the case on this check-up. I did my x-ray, but when Dr. Shufflebarger came in, I knew by the look on his face that the news was grim. His exact words, “it is highly unlikely that Sophia can avoid surgery.” I could not believe what he said. I began to cry; he asked me why I was crying. I told him that I was a good swimmer, and I wanted to be able to swim and compete and go to college and swim collegiately. He looked right into my eyes and said, “Who said you can’t? You will be able to do it all. The butterfly might be harder, but you can.” I met nurse Michelle Burnstein that day. She would become our best friend in this journey. I left there unbelievably sad. I didn’t even go to practice that day. I couldn’t. I thought about my swimming, and the years I had put into this sport and how I didn’t think it was possible. I asked my family to not tell anyone about my upcoming surgery. I didn’t want people to feel sorry for me, or pity me.

So I went to practice every day and worked hard. I wore the brace, but only to sleep, and we decided that my degrees, although it was over the 50%, it could wait for the summer. In January my mother and Michelle set up a date. June 13, 2018. That was my great-grandmother’s birthday, and I knew she’d be there as my guardian angel. I swam at my championship meet in March like it was my last one for a long time. I didn’t know how long my recovery would be. The short course season ended, and around that time I had decided to tell my swim friends and coaches. I knew that they were hoping for the best, but they too were unsure about my recovery. I began the long course season in April, and swam three meets. As school was ending, I knew that the surgery was approaching. I didn’t want school to end. I went to my last check up before surgery on May 3rd of 2018. It was a long three-hour appointment in which Michelle explained what my surgery pre/ during/ and post most would look like. I was photographed and I asked two questions. My only two questions were: “When can I start swimming?” and “will I ever do the butterfly again?” The butterfly was my best stroke and it scared me that I could never do it again. I began drinking folic acid and iron vitamins, and two weeks before my surgery my dad and I donated blood for my surgery. I took it like a champ. I didn’t want to miss practice because in my eyes if I missed any practice it would make me slower.

My mom received a phone call from Michelle the first week of June, asking if I could get a CT scan of my spine. I was worried and thought that there was something else happening. I went the day before my last long course meet and in my mind maybe ever. I didn’t want to miss practice, so we went the first day of my two-day summer vacation to get my scan done. My curve was in the 60’s! I could not believe it. The Saturday before my surgery my parents took me to Universal so I could ride the Hulk one last time. It was the best weekend. On Tuesday, the very last day of practice, I said my goodbyes. I remember getting picked up and keeping myself from breaking down because I wanted to be at the pool, and not going to the hospital to have surgery. We registered and that began the longest night of my life. My dad stayed with me, and the next morning my brother, sister, mom, dad, and my godmother were they’re waiting for me to be wheeled to the surgical/prep room. I went with mom and dad, and at that point said goodbye to my sister and brother. In the prep room, I saw Dr. Shufflebarger and Michelle. They made me feel very relaxed and sure that this was for my own good. I am not going to lie, I was nervous. The doctors gave me something to relax me and that is when I was wheeled out to the actual surgical room. I saw Dr. Shufflebarger wash his hands and the next time I woke up I was in my room.

It was tough. Recovery has not been easy. I cannot explain the pain I endured the first few weeks. I hated having to walk, sit up, eating the first few days. I kept listening to my inner voice that told me that this would end soon. I have to say that it was hard. I needed help going to the bathroom, lying down, sitting up you name it, I needed help with it. As the long summer days came, all my friends were having fun, and I was recovering. I had to walk every 2 hours to help with my recovery. Everyone in my family took turns. I got to know the neighborhood and my neighbor’s very well. I had many visitors in that time, my pain was still there, but everyday got better. Like the words of my 5th grade teacher I was a warrior.  I could not wait for Dr. Shufflebarger to give the ok to get into the water, and sure enough in the month of July 6 weeks later he gave the ok. I was able to get in the water and just float. It was great. I started to have friends come over, and hang out in the pool.

Dr. Shufflebarger gave us the o.k. to get back to the pool on September 13, 2018. No diving or flip turns, but I could kick. I remember getting back, and my head coach was very nervous. I jumped into my own lane and was able to kick and it felt different than before. I had to get used to my body altogether. I was used to swimming in a twisted body, my hard ware was holding my spine together and my hips were straight and my legs were the same length. I felt my insides and there times that I got scared. Mom made sure to call Michelle several times, to only hear “it is normal”. I still had doubts that my swimming would be like it used to be. I was slower, my legs hurt when I kicked, I was afraid to be hit or kicked in my back by anther swimmer. However, in October I made sure to go to practice and try harder. I had specifically picked the beginning of June to be able to attend the Championship meet in Gainesville on the first weekend of December. I was given the all clear 7 days before that meet to do flip turns and dive off the block. I remember how excited I was to let my coach know, and how nervous I was when I did my first jump and flip. I was ready. I went with my team, Gulliver Swim Club to the meet. My swims were surprisingly not too off from my best times. The last night I got a best time in the 100 free! It was all I needed to believe that this surgery was not going to impede me from getting my ultimate goal: swimming collegiately, getting my best times, sectionals, futures cuts etc… Nothing would be impossible! I could do it!

I worked hard training for the Championship in March, the same one I didn’t know I would swim in. I was entered into 7 events that I had qualified for prior to surgery. Would I be able to swim close to those times? I went into that meet hoping to be close to my best times, after all it had been 9 months since surgery and I was going to swim the 200 fly and 100 fly, which Dr. Shufflebarger had said would be tough to do again. March 15,16,17 of 2019 was the junior Olympics. I swam 5 out of 7 best times and received three AAA times, which means I did very well. I couldn’t believe that my hard work had gotten me this far. The road to recovery has not been easy. I still get stares and “ill” or “aww “when people see my scar. I see it like my battle wound. People used to get grossed out when they would see my spine all twisted when I’d bend before I would jump into the water and now they are horrified to see my scar. I have learned that my scar identifies who I am. It was meant for me to have this surgery, to explain to other athletes like me that you can do it. It will not be easy, and you will be told that you cannot do it, but that should light a flame in you to believe in yourself and do it.

I am only 14 years old, and I have experienced something that most people will have never experienced. I knew the day I left Nicklaus Children’s hospital that I wanted to help other patients that were going to endure the same operation as mine. I have always worn crazy looking socks at my championship meets; it is a good luck charm for me. I wore them the day of my surgery and for the first six weeks of my surgery. I have decided that I want to collect crazy socks and I hope to reach 1,000 followers for my cause Curvescanbecured. Be assured that you are not alone, scoliosis affects many young children, and there is nothing that you could have done different to get this disease. Know that you were chosen to be a scolio warrior!

Sincerely,
Sophia Perez

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Ella Glassman

My name is Ella Glassman.  I am a 13 year old girl from Davie, Florida. I am a friend, a daughter, a sister and a Girl Scout. I have many accomplishments I am proud of including being recognized as one of 50 Kids of Character in my county, serving as President of my elementary school and participating in over 15 community service projects that I helped organize. I love music, fashion, spending time with friends, going to sleep away camp and cooking . And, I have scoliosis.

An essential lesson I have had to learn in my life is to never allow yourself to feel a victim and give up on your goals just because a new obstacle comes your way.  I have been keenly aware of the importance of the desire to keep going and not give up as I have dealt with scoliosis.  When I was diagnosed with scoliosis, at age 11, I was completely shocked.  I found out I would have to wear an uncomfortable, hard plastic brace 16 hours every day and will not know for a few years if I will need major back surgery.  It would have been easy to give up and say I’m not going to wear the brace but instead I have a plan to follow and I stick to it. I also try to focus on the plenty I have in my life, rather than what is missing in my health.

I have always been passionate about giving back to my community and supporting those in need. I organized an event called “Ella’s Mitzvah Mini Golf Tournament” this past November to benefit Setting Scoliosis Straight. I was able to collect raffle donations from over 25 local businesses and sold over 150 raffle tickets.  In addition, I organized a fun night out for over 70 guests who came out to play mini golf, enjoy shaved ice treats and have fun! It meant so much to me to raise money for an organization as wonderful as Setting Scoliosis Straight. This event have raised over 1 thousand dollars!

As a Scoliosis Ambassador for this charity, I hope to help others who are diagnosed with the same condition.  I want those who are just now being diagnosed to know that not every day is easy but there is always a way to get through it.  When it feels overwhelming, I play with my dog or watch a good movie and I eventually feel better.  At first you may be embarrassed to tell other people about your scoliosis, but you will learn that there is nothing embarrassing about a serious medical condition. Those who care about you will not tease you or judge you, rather they will support and encourage you.  Now, for me and my friends, putting on my brace is no different than putting on my shoes.

Sincerely,
Ella Glassman

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Sydney Borchardt

My name is Sydney Borchardt and I am 13 years old.  I was diagnosed with idiopathic scoliosis at my 10 year old well-child checkup.  I didn’t even know what scoliosis was at that time.  My parents just told me the doctors were going to monitor my back.  Six months later, we went back to the orthopedic doctor for x-rays and my curves had progressed from 18 degrees to 38 degrees.  The doctor explained that I would need to wear a back brace to keep my curves from progressing.

At the orthotics office, I was shown the boston brace.  It was big and hard and I had no idea how I would wear it 23 hours a day.  At that time, I was a little too young to understand everything and my parents kept a positive attitude and expected the same from me. My parents planned a fun outing for me the day I got my brace.  It was a fun day, but the brace was hard to adjust to.  In time, it became a part of me.  I did feel lonely at times because I didn’t know anyone else that had scoliosis.  My grandmother had scoliosis and had spinal fusion, but she passed away from cancer before my diagnosis.  Having the straps on the back of my brace made it hard because I had to always ask someone else for help to take it off and put it back on.  My best friends became experts in strapping me back into my brace.

After 1 ½ year of bracing, my parents took me to Wisconsin for some specialized chiropractic care.  The chiropractic exercises were a lot harder than brace wearing, but I was committed to do it to try and avoid spinal fusion surgery.  After 5 months of the exercises and still wearing a brace at night, my curve had progressed to 42 degrees.  After much research, my parents decided to fly us to Shriner’s Hospital for a consultation for VBT.  I was so scared to have surgery, but my parents were really upbeat and positive about the possibility of VBT.  My stomach hurts even thinking about needles. I was more scared about having needles put in than the actual surgery.

On February 16th, 2018 I had VBT at Shriner’s Hospital in Philadelphia with Dr. Steven Hwang.  Within two weeks, I was feeling great and I certainly did not miss wearing my brace.  I am so thankful to Shriner’s and my parents for all that they have done for me.  I have also met many girls with scoliosis through the Curvy Girls organization.  I recently became the leader of the Oklahoma Chapter of Curvy Girls.  I want other girls to know that they are not alone.  It wasn’t an easy journey, but I am thankful to everyone who has had my ‘back’.  I feel more confident about speaking about my health issues.  My 1st goal is to get scoliosis screening back in Oklahoma schools and then work on better scoliosis care here in Oklahoma.

Sincerely,
Sydney Borchardt

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Maria Chiara Feadda

My name is Maria Chiara Faedda, from Italy. I am now 37 years old. I was diagnosed scoliosis when I was 11, and that was when I received my first brace. I was supposed to wear it most of the day, the only exceptions were lunch, dinner and while sleeping. My scoliosis was moderate and it affected the central part of the spine (I guess it was in lordosis form), this is the reason why the doctor decided for a brace and for constant physical therapy.

I started taking swimming classes for many years and went through some very painful therapies hoping to get rid of that painful and ugly brace. During those years, I had to learn to be stronger than other kids of my age, some of them were mean, they made jokes about my conditions and even called me “DEFORMED”. I have always been aware of being different, because of my spine, I couldn’t wear all the clothes I wanted due to the brace and I hated myself and my reflection in the mirror.

Over the years, I built up confidence in myself, and my parents and my family have been my strength. My friends encouraged me not to give up. The love I have always received has been an incredible blessing. It all changed with my family moving to Belgium where we lived for a few years because of my father’s work.

It was January 14th (my mum’s birthday), and I am sitting in front of Dr. Roussoly (he literally saved me), in his office at The Centre Médico-Chirugical de readaptacion des Massues in Lyon, France. I clearly see my spine x-rays hanging in front of me as the doctor says “SURGERY”, and he explains the procedure to my parents, I start silently crying, unable to stop the tears from my eyes. Hospitals have always scared me and all of a sudden I was to be in one for a while.

June of 1999, is when I had a 5 hour surgery, the surgeons corrected the curve by  inserting titanium rods on both sides of my spine and in between to keep it straight. After a few hours in intensive care, I was back in my room, and three days later I started walking again. I spent two weeks in hospital and it took six months (and a lot of physical therapy) to recover. The pain has been intense and I could barely do any normal activity but it was all worth it. You never completely heal from scoliosis, you learn to live with it.

This is the first time I have ever told my story, going through the scoliosis process marks you for life. It has left some insecurities about my body and I have scars and one that is visible on my back. Now, I have decided to share my story and help give support all the unique individuals that are struggling with Scoliosis.

To all the girls dealing with scoliosis, do not hate your body. You are not ugly, not a monster or deformed, you already are amazing women. To my mum and dad, and to all the parents of scoliosis fighters, thank you for the constant love and support that make you the extraordinary human beings that you are. To my fiancé, the photographer who took the pictures of my scar and made it a work of art. Thank you love, for showing me the beauty of my imperfection, and teaching me to love my scar the way the you do.

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Shae Smith

2018 Miss Springfield Outstanding Teen

When most girls are excited about new fashion trends and shopping in the junior section for clothes, there are a group of girls that struggle with body image and confidence due to Scoliosis.  Scoliosis is a sideways curvature of the spine. It can affect people of any age, from babies to adults, but most often starts in children aged 10 to 15.  For Shae Smith, it was at the age of 11 when she received her Idiopathic Scoliosis diagnosis and her self-confidence took a big hit.  Braced in a hard body shell for 23 hours per day, she had to learn to dress in a way that made her unique and attracted attention.  She was always trying to hide the brace, but learned quickly that she had to make the best of it.

As Miss Springfield’s Outstanding Teen 2018, Shae’s platform is one of passion as she is advocating for early stage detection, intervention and awareness of Scoliosis.  Creating a website and media movement #catchingthecurve, she hopes to educate parents and teachers on the ways to detect early warning signs.  She has also lobbied to MO government officials to mandate school screenings across the state and filed Senate Resolution No. 51 declaring September 1st Scoliosis Awareness Day in MO.

Not only does she want to educate, she also wants to show other girls that life does not have to stop with Scoliosis.  She says, “Scoliosis makes its mark on us and we use it to make a difference.” Shae is encouraging young girls like herself to take pride in their body whether wearing a brace, carrying a scar, or living with a rib deformity.  She is a competitive dancer, model and pageant title holder who is always asked about her deformity and knows the struggle with clothing fitting improperly, pulling to one side, or having a crooked zipper.

Fashion designers and clothing experts are also starting to identify the need for girls with Scoliosis and helping with styling tips.  Stores like Dillard’s are sponsoring fashion shows.  On March 10, 2018, Dillard’s at the Battlefield Mall in Springfield, MO, teamed up with Shae and hosted her fashion show in honor of these brave young girls.  The fashion show, “Confidently Curvy,” featured girls across the state of MO and Arkansas, along with a guest speaker.  Dr. Clayton Stitzel, one of the foremost experts on Scoliosis-based treatments and advocate for early intervention, traveled from PA to offer advice, share stories and discuss new non-invasive Scoliosis treatments

“Fashion is what we make of it and it starts with a movement where Scoliosis warriors stand together to educate others on catching the curve, and supporting each other through self confidence in our own skin and living out our dreams,” says Shae.

Her goal is to encourage others to join her and team up with a national organization to continue to bring the much needed awareness to this condition.

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Marisa Gelbart

Hi everyone, my name is Marisa Gelbart and I’ve been a part of the Setting Scoliosis Straight team for a little over a year now. However, besides being a part of Setting Scoliosis Straight, I’ve been mentoring people of all ages that will be having a spinal fusion surgery. While I mainly work with kids, my parents usually help mentor the parents of the child who will be the patient in their upcoming procedure.

I was diagnosed when I was ten (fourth grade). My older brother Eric and I worked for around five years traveling to different surgeons, physical therapists, and specialists that would try making our scoliosis more bearable than it was before. About 3 weeks after my 15th birthday, I ended up having spinal fusion surgery done by Dr. Peter Newton and his amazing team. My last x-ray before the surgery was an all time high of 107 degrees. The surgery lasted 9.5 hours and now that it’s behind me, I’m beyond grateful that I got spinal fusion done.

My advice for future patients would be to remain calm and look for the positive in all of this. Even though the degree curve and surgery time seem daunting, that isn’t the reality that many people face for this procedure. If anything, it’s less than half of that. The point of this procedure isn’t to make you think you failed with physical therapy and the brace didn’t work, this is allowing you to have a more comfortable, and happier standpoint in your life.

The reason I enjoy giving back to others is because when I was told I was going to need surgery, I felt like I failed all the hard work I was putting in. I was always told that surgery was the absolute last resort, and not a good resort either. However, after the entire process I learned how incorrect those statements were, and I’ve been able to grow as an individual much more confident in my skin and capable to do more things than ever before. I didn’t think anyone could relate to me because of the intensity of my curve compared to others, but now that I’m on the other side of the fence, I’ve come to find that I’ve related with so many people no matter what the degree of their procedure was. Throughout the entire process, there wasn’t one person who wasn’t on my side, and my family and friends have been there the entire way, plus now I can say I’m a cyborg.

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Tania Richard

My name is Tania Richard. I am 21 years of age and live in Miami, Fl. I was diagnosed with scoliosis when I was 8 years old and have been seen by Dr. Shufflebarger ever since. Great doctor by the way. I had upper and lower back surgery about two years ago now and ever since then I have had no pain or discomfort unlike before. It has been a while now and I feel great about myself and have no complaints. Before I had scoliosis surgery my spine was shaped like an “S” and I was concerned with my body image. I was afraid to wear a bikini because of how it would look on me. Now after my back surgery I feel confident and my self-esteem went back up. I am proud and feel comfortable wearing whatever I want. It has been the best decision I have ever made. Participating in this study means a lot to me. It shows patients how a surgery can be life changing to someone to better their health.

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Veronique

On July 30th of this year, I underwent surgery for my scoliosis. This was my first surgery ever, so needless to say, I was very nervous and afraid. My surgeon, Dr. Stefan Parent, really reassured me that I would be okay. This helped me trust him with my surgery. The first two weeks after surgery were the most difficult. I hardly slept at night because of the pain and nausea caused by the pain medication. I was certain that the pain would never go away and that I would never return to my normal life, but after just three weeks, I could see a big improvement. I didn’t walk like a robot anymore, and I even returned to school. After one month, the pain was completely gone. Now, I am happy with the results of my surgery. The speed at which the body is capable of recovering amazes me! I feel better about myself, I have no more complexes about my back, and I can confirm that this surgery was worth the pain.

 

 

 

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