scoliosis brace

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 5^th grade, a few months before my 10^th 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 3^rd, 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 3^rd 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 5^th 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.

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 16^th, 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 1^st goal is to get scoliosis screening back in Oklahoma schools and then work on better scoliosis care here in Oklahoma.

Sincerely,
Sydney Borchardt

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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