Patient Stories

My name is Alyssa, but most people call me Aly, I will soon be a Junior in highschool, and I wanted to express my story of struggling, and overcoming scoliosis, in hopes others may be able to relate. I was first aware I had scoliosis in fifth grade in 2016-2017. I was getting my yearly physical exam when my doctor noticed I had a slight curvature in my spine. At the time, it wasn’t something to be concerned about so he encouraged us to ‘keep a close eye on it’ until my next appointment. After a year, the doctors hadn’t noticed any drastic changes, so they continued to keep an eye on it just in case, and it was pushed off to the side. (For the most part)

In February 2020, I was in the middle of seventh grade. My school had informed us that they were going to do scoliosis checkups, for all students in my grade level. The girls were checked into the locker room, and when the time came for me to get checked, the nurses were writing a lot more information for me than they were for the other girls. During this time scoliosis was a disease people would often make fun of, and I can still remember their comments saying, “She’s so stiff…she can’t touch her toes???”, and the constant stares, and laughs. Since my family and I knew I had a curvature, I said to them, “My parents know I have a slight curvature.” To which they replied, “Ok, but we will send a paper home with you just in case.”

Later that day, I came home and told my dad what had happened at school, and my dad soon checked to make sure there was nothing to worry about. At first glance, it was very distinct that my curvature had progressed and gotten worse.  My dad was freaking out which left me distraught and upset, and I just went to my room and cried. As I lay in my room, I couldn’t stop thinking about the possibility of me having to get surgery, and the fear I felt at that moment. I tried to push it off but ended up gambling about whether I should stress or stay calm.

Fast forward to March 2020, we tried to get an appointment with an orthopedic doctor but were unsuccessful because of the pandemic. I ended up getting an appointment in May, where I soon discovered how serious scoliosis was, and how it is a life-changing disease. Going through the process was very scary, from the machines to the constant measurements, and X-rays.

At my appointment, they gave me a gown to change into and took me to the x-ray room. The machine was very simple, like a camera, that had a light shining on me. Standing in front of the machine, I could feel my eyes starting to water because of how scared I was, but I held it together and continued on with the x-ray, as I refused to cry in front of the nurse. After my x-rays,  my doctor measured my curves on my thoracic and lumbar. My thoracic was the worst of the two curvatures and was curved at 40° and was progressively getting worse. They suggested I get a brace until we decided what we wanted to move forward with. A month later, I was given a back brace, and my options were very limited. I had a choice to do nothing and risk my spine getting worse, wear my brace until I was 18 and then get the surgery, wear my brace until I stop growing, or get surgery as soon as possible.

The brace was so unbearable to wear, that I would cry every time I put it on. I was told the brace wouldn’t fix my problem, but it would hopefully stop my spine from getting worse. I didn’t want to wait until I was 18  because I didn’t want to risk my spine getting worse, and having my movement become limited in the future. So, my last two options were to get a Spinal Fusion or a Vertebrae Body Tethering (Tethering/VBT). A spinal fusion is a surgery where bolts and rods are placed in your spine to keep it aligned, while Tether is a “rope” that is attached to screws on the vertebrae which goes along the side of the spine to keep it aligned.

I went to one of my regular orthopedic appointments, changed into the gown they gave me, and sat down with my doctor, and my dad. I explained to my doctor that I wanted to get a tether done, but changed my mind after I found out they don’t take the strings out of your body if it snaps. I didn’t want to risk having an infection so I chose to do a Spinal Fusion instead. Once we got that discussed, they stepped out of the room for me to change back into my regular clothes. I tried to hold back my tears, but the more I thought about it the harder it became for me to hold in my tears. I remember covering my mouth with my hands to muffle the sounds of me crying, but I quickly wiped away my tears and tried to get dressed. Yet, every time I wiped my eyes, more tears came, and my vision became blurred by my tears. I dried my face and put on a fake smile so no one would be concerned, but inside I felt so alone in that moment.

My biggest fear was getting a Spinal Fusion because I didn’t want my spine to be completely fused from my thoracic to my lumbar because my motion would be limited. Luckily, I was told they would only have to fuse my thoracic, and hopefully my lumbar will follow as I grow. I would still be limited, but the change wouldn’t be so drastic, and there was still a possibility that my lumbar could get worse. After a few more days to think about the decision, we scheduled the appointment and I was due for surgery on December 16, 2020.

As time got closer, I struggled to wear my brace, which caused me to become more anxious. I didn’t know anyone else that had Scoliosis and I often felt very alone. I knew my family and friends were always there for me, but it’s not the same, because they don’t understand what it’s like to be in my situation. No one knows what it feels like to be YOU.  I tried to stay brave and calm but I was feeling really alone, and sad during those times. I remember saying,  “Why me” constantly, and thought about how my life would have been if I never had this disease.

I remember there being a time, I stayed in my room for a week and barely ate because I was thinking about how quickly my life would change, and how I would never be my normal self again. I then tried to make the most of my time and learned every TikTok dance that was trending, so I could cherish the memories I had before my surgery. I knew after my surgery I would not be as flexible.

I came into this situation at the beginning of the pandemic, and being a student during the pandemic was really hard on most of us. Personally, I loved being online, but during this time I didn’t get to see my friends a lot, and I started to become distant from all of them. Soon,  I came to a point where I had one friend, and it was difficult because I didn’t have close friends that were going through the same situations as me, but I am so grateful for the few I had because they were always supportive and cared about my well-being.

On December 13, 2020, I was getting really nervous because the time just kept getting closer, and it was almost time for us to start leaving to go to the hospital. I was getting my surgery performed out of state, in San Diego, CA at Rady’s Children’s Hospital which was even scarier because I would be away from home. We decided to take our RV to be safe during the pandemic. We packed all of our things inside our RV and before we left, I remember sitting on my couch watching SNL, with Timothée Chalamet as the special guest. Timothèe is my favorite actor and his interviews are so funny and enjoyable to watch, so it brought me great comfort to see him on SNL before I left. As I got in the car I looked at the clock which read ‘11:42 pm’, I remember looking back at my house, and seeing the scenery/tone change, as it would in movies. On December 14, 2020, we arrived at the RV park and spent the day resting and adjusting.

December 15, 2020, was the day before surgery. I had to get up early to get Covid tested and confirm with my surgeon about the surgery. While my family and I were there, they gave me some anxiety pills to help relieve my nerves, and special soap to clean my back the night before my surgery. The rest of the day, my family and I explored a little bit of San Diego and went to the beach before my surgery. (The beach is my favorite place) The time was now 8 pm and we were on our way back to the RV. We stopped at Dunkin’ Donuts to try the new ‘Charli Drink’ which had a lot of caffeine in it but didn’t think much about it since my sister and I don’t drink a lot of caffeine anyway. When we got back to the RV, we watched the Live Action Mulan Movie, which had just come out at the time, and discussed the plan for my surgery. Before bed, I used the special soap they gave me and took the anxiety pill, but after a few hours the pill hadn’t kicked in and I was feeling more nervous than before. I told my family the pill obviously wasn’t working because I was still feeling very anxious, and jittery, and couldn’t fall asleep. We tried to figure out the reason and then remembered the ‘Charli Drink’, and agreed I wouldn’t have any more of that for a while.

That night, I laid in bed until three in the morning, thinking about how much my life would be impacted, and how I would always have a scar on my back from the surgery, etc. I soon started to silently cry, so no one else could hear me, but I also thought about all the positive things that could be taken from this, like how I wouldn’t have to worry about my spine getting worse in the future, and how I could still have some of my movement rather than little, to none. In the midst of my tears, I could feel my puppy leaning against my leg on top of my sheets, slowly inching higher up to my back to try and comfort me, but I still felt sad. So I turned around, hugged my puppy, and cried on him until I began to fall asleep.

Almost an hour later, I had to wake up and get prepped for the surgery. I walked into the hospital with my dad, while I still had my pajamas on and got checked in, then made our way to get everything financially ready. Soon, I was headed to pre-op. I sat at the edge of the hospital bed and waited for the nurse and Anesthesiologist. The nurse gave me some anxiety/sleeping pills and told me to change into a gown and a special kind of underwear. As I was changing in the bathroom, I remember quietly sobbing and trying to hold in my tears. I really didn’t want to cry because I knew I wouldn’t be able to stop, but I was so overwhelmed with emotions, I didn’t know what to do, or how to feel. By the time I got back from the bathroom, the Anesthesiologist was there and had asked me which smell I wanted when he gave me the medicine. (I choose cotton candy, as it is my favorite dessert.) When the Anesthesiologist left, I laid down in bed and tried to stay up to say goodbye to my dad. I tried staring at the TV, but nothing was playing but a slideshow of pictures, and after a few minutes, I was asleep.

After my surgery, I remember waking up in my general room and seeing my mom for the first time after my surgery. I looked at my arms and saw IVs in them, (which surprisingly didn’t hurt) I looked around my room which had a pretty painting of a rainbow above my bed. I saw I had a little green button, which I soon found out I needed to push when I had pain. I pushed the button in fear of feeling pain and immediately fell back asleep. I woke up 6-12 hours later. The next day, the doctor continuously came in to check on me, but every time he came in I was sleeping. When I finally woke up,  I told my mom everything that happened in pre-op, and how my dad never said goodbye to me before I went into surgery. Later that day when my dad came into my room to see me, he explained to me how the Anesthesiologist came in and gave me the medicine, but I was already more than halfway asleep. The Anesthesiologist explained to my dad how I wouldn’t remember anything because of the medicine, and because of how tired I was. My dad explained how I had a whole conversation with him, as the nurses were rolling me into the operating room. Right before I went into the operating room, and how he said ‘goodbye’, but I didn’t remember. ( I don’t even remember the Post-Op room.)

On the third day, the Physical Therapist came in and we started to practice walking and using the bathroom. She helped me out of bed and got me used to walking out into the hallway. I was walking really slowly, and my body felt very heavy, but I did really well overall. Using the bathroom was a little bit harder because it involved a lot of leg work and I needed assistance with that for a few days. On the fourth day, I started eating a lot more, and I practiced walking up the steps for the first time. Later that day, my mom and I decided to practice walking up steps again, and saw another girl around my age walking around, with the same tape on her back as I did. I decided to go walk over to her and said,  “Don’t worry, everything will be okay!” She looked almost my age, if not a little older. After that, I walked back to my normal route to practice walking up the steps again. When I got back to my room, I asked the nurse if I could have the girl’s number so we could stay in touch, and luckily the girl said that was fine.

On the fifth day, I was starting to feel like my normal self again, and I started to have a lot more energy. I was practically doing everything myself except for using the bathroom. I added the girl’s number, to which I later found out her name was Italia! Turns out, she had her surgery one day after I did and was in the room across from mine. The next day, my doctor prescribed some pain medication for me to use until I got back to normal, and my mom and I went back to our RV and started to adapt until I had my next appointment.

The first day I was at the RV, I was so heavily exhausted, I slept a lot and woke up at random times during the night. I would get hungry randomly, and I didn’t need to use the bathroom as often either. By the seventh day, I was able to text my friend Italia and it was nice because we shared some of the same problems, since we had the same surgery. We talked about the discomfort we felt, what we did to overcome them, and how we felt about the experience overall. Knowing someone that understood the pain, and problems I felt was nice, and comforting because it made me feel not so alone during the rough times.

Two days later it was Christmas. Christmas is my favorite holiday, and the feeling of not being one to enjoy it broke my heart. I love the decorations, the candle scents that blow throughout the house, the bonfire my family has while we are roasting our marshmallows, and the indoor fireplace we sit next to while watching Christmas movies, but that year was just so different. Christmas didn’t feel the same, I felt very upset, cold, and empty.  Christmas just felt like any other normal day. This has now affected my view of Christmas as a whole, as I will sometimes get really sad and moody. On December 30th I had my check-up appointment. The nurse removed the tape to look at my scar, and they gave us cream to help it heal quicker. The tape was really painful to take off because it was so sticky, and she had to do a little at a time. After my appointment, they gave us a date for a check-up six months later, and we went back to the RV and spent one more day in San Diego before we got ready to leave.

By the 31st  we were on our way home and made it back at 11:15 pm. When I got in the house, I let my parents take off some of the sticky residue the tape left, and rub Vaseline on my scar, before I went to bed. I usually watch the ball drop in NYC and the fireworks blow downtown on the Las Vegas Strip, (Since I live in Vegas) but that year I just went to sleep and when I woke up, it was already 2021.

By January third, I was able to do mostly everything by myself and was starting to do Tiktok dances in my bathroom again. I was able to walk around, use the bathroom, get food, and get into bed on my own. I still talked to Italia a lot, and things started to get back to normal. My surgeon said it would take three months to get back to normal, but by the end of February,  I was practically back to normal and decided to sign up for my first pageant which was held in June 2021. By March, I was cleared to do everything except for hard-contact sports. During April and May, I spent my time practicing for my upcoming pageant and buying dresses, outfits, shoes, etc. June 25th was the day all the girls in the pageant learned the choreography for the opening act and held interviews. June 26th was Pageant Day, and for the first time, I think I did exceptionally well. I won best in Activewear, gained a lot more confidence, and was able to make new friends along the way. June 29th was my six-month check-up in San Diego, so we left the next day after my pageant.

My scar had healed up very nicely, and my doctor cleared me to do everything. He also recommended I become an Ambassador for the Setting Scoliosis Straight Foundation, and I happily agreed. After my appointment, I should be completely cleared for everything after a year,  and I didn’t need to schedule another appointment unless there was an emergency.  The date is now June 13th, 2023, almost three and a half years since my surgery and I am doing better than ever. I have been competing in more pageants, and enjoy using my platform to share my journey of Scoliosis in hopes to inspire others and be the person young teens can relate to, as I wish I had.  In my previous pageant, one of the people in the audience approached me and said she had Scoliosis as well but didn’t get the surgery, but instead expressed how I had inspired her. It is not the summer of 2023 and I am having an absolute blast. I am involved in so many extracurricular activities, I hardly notice a difference since my surgery, and I sometimes forget I’ve even had it.

Writing my story has taken a lot out of me, as I can’t always find the right words to say, and while I still get a little insecure about my scar, I remember all the things I have and will be able to accomplish, and the positive outcome this experience has had on me. I still talk to Italia to this day, and we are the best of friends. I am so thankful to all my doctors, and my Surgeon Dr. Newton, who encouraged me to share my story and become an Ambassador. Scoliosis is a big struggle that many teens have to deal with and is often overlooked and discarded. This is an issue that is very rarely talked about, and many teens are embarrassed to talk about it. I strive to have my story give other teens reassurance, and positivity and encourage them not to be ashamed to speak about this disease, or any issues they may be struggling with in their day-to-day life. I hope others can learn, and feel a sense of connection from my story to theirs!!