Life with My Brace.
I spent the rest of my summer in the brace. I hung out with friends, joined a volunteering organization, pulled weeds 2 hours a day in my brace, went horseback riding in my brace, tried different clothing styles, and got more comfortable with showing my brace.
Hi! My name is Sueda, I am 15 years old and a freshman in high school. I am a part of the student council and my school’s art magazine committee. I love to read, bake, act, and make pottery.
In April of 2021, I went to the doctor for my regular check-up (my first one in two years because of covid). My doctor asked me to bend over, she noticed a curve in my spine and measured it. It was only 8 degrees, nothing to worry about. She said I should do physical therapy for 6 months and come back to see if it got any bigger.
So for 6 months, I did PT religiously. My physical therapist never asked for X-rays and showed me a bunch of yoga positions that would help. Soon after my 14th birthday in October 2021, I went back to my doctor. Again she asked me to bend down, measured, and said that it was now 15 degrees and I should go get X-rays.
We couldn’t get an appointment with the orthopedic surgeon until November. For two months I kept up with PT, got the role of the queen duck in the ugly duckling musical, started an environmental club, and almost forgot about having scoliosis.
In mid-November, I got my first X-ray. I took my X-ray confident my scoliosis was not severe. A nurse came to take my height, I asked if I needed to take off my shoes but she said no. My mom and I waited in the room for a while, the doctor came in and sat down, he opened the X-rays and showed us. I was shocked to see how prominent it was, he said I had a 32/36-degree curve and would need to wear a brace at night. The whole interaction was very rushed, he wrote a prescription for a Boston brace and left. My mom told me something did not feel right and she wanted a second opinion.
My mom scheduled an appointment at the children’s hospital in Denver to talk to an orthopedic surgeon about bracing. She researched braces and a couple of days after she scheduled the appointment she saw a video that Green Sun made, and she looked at their website only to find out they make their own brace and they were in Fort Collins! My mom sent them an email and showed me the video. The next day Jamie called my mom, and they talked for a long time about our situation. My mom also found out the tool the pediatrician used to measure was not for curvature but only to measure the rotation of the spine and I should have gotten X-rays done as soon as we saw the rotation.
Mid-December, 2021, my mom and I went to the Denver Children’s Hospital. Dr. Erikson looked at the X-ray I got in November and told us that I have a 35/48-degree curve, not 32/36 and I will need surgery. We mentioned the Whisper brace instead and were able to talk to the orthotist the same day and get measured. Getting measured is scary and uncomfortable, I was not planning on being measured so I was surprised and unprepared. On December 21, 2021, during my school’s Winter break, we went back to Children’s Hospital but this time Jamie and two Whisper brace engineers were there. When they brought in the Whisper brace I was shocked, like all of a sudden this was really happening and I will have to wear that brace for who knows how long. For around 4 hours they adjusted and bent pieces of the brace until it felt comfortable. I wore the brace the whole ride home sitting rigidly unsure of how to sit. As soon as I got home I took it off and put it away because I didn’t want to look at it.
I kept wearing my brace more and more every day, the first night I slept with it was horrible, celebrating the holidays with it felt so strange. On January 4, 2022, we went back to the Children’s Hospital again, for my first in-brace X-ray. We saw no major correction but our goal was to make sure the curvature didn’t get worse and after a few more adjustments we left. In 5 months I will come back for another X-ray to see if anything has changed.
I went to a new physical therapist, she told me that yoga is very bad for people with scoliosis because most of the time they also have hyper flexibility so they risk overextending their joints causing dislocations more often, she also said it is important to know your curvature when doing exercise so you don’t make anything worse.
Now with new PT exercises, I waited for the next appointment at the Children’s Hospital. I wore my brace pretty much every day. Over time wearing and sleeping in it became much easier and sometimes I would forget I even had it on. I covered it in my favorite stickers and started to appreciate what it does for me. Around a month after I got my brace I opened up about it to my friends and they were incredibly loving and caring about the situation. Once I started opening up about it everything became easier because I no longer worked so hard to hide it.
Once the weather got warmer I started wearing my brace over my clothes instead of hiding it. I was asked a lot of questions but no one ever said anything mean. I began looking at it as a clothing accessory rather than a medical device, that was when wearing it became a normal for me that I no longer worried about. I practiced the Ugly Duckling musical in my brace sometimes. I can dance and sing in my brace, so I did! I went to my 8th-grade graduation in my brace and began summer break.
A couple of weeks after summer break started I went in for my first out-of-brace X-ray, I was very nervous because if it got any worse then I would need to get surgery. When we got the news that my curve was now 32-35 degrees we were so excited. I was just expecting the brace to keep my curve stable but instead, it decreased by 3 and 13 degrees. This was wonderful. At that time I was at Risser 3 so I still had growing to do. We made another appointment in 4 months to see how anything changed.
I spent the rest of my summer in the brace. I hung out with friends, joined a volunteering organization, pulled weeds 2 hours a day in my brace, went horseback riding in my brace, tried different clothing styles, and got more comfortable with showing my brace.
The start of high school was hard. I went to a different school than all of my friends so I barely knew anyone. I started covering my brace again and stopped being open about it. I was always worrying whether or not someone would touch my back and feel my brace.
After my 15th birthday, on October fourth I went back for another out-of-brace X-ray, and as of now my curves are at 30-35 degrees and I am at Risser 4. I have started opening up more about my brace and wearing it over my clothes again, I have made new friends that are very understanding. In April 2023 I will go back for another out-of-brace X-ray. While the orthotist says I will most likely stop wearing my brace soon, my family has a history of having major growth spurts when they are finishing high school so I might have to wear it longer.
For the past 10 months, I have been learning to love my body, while it is a journey full of ups and downs I am very grateful for everyone that has been a part of it and I am very excited to see what my future with scoliosis will look like, and how I may have an impact on the future treatment of scoliosis. I am honored to be the first Whisper brace ambassador. I hope my story will show other people that no matter the ups and downs and how out of control your life may seem, you still have the power to change the outcome.