Embrace the Brace with Ava

Our ninth TOPS 'Back Stories’ guest blog feature writer is Ava, a 17-year-old scoliosis warrior who created a YouTube channel called ‘Embrace the Brace’ and a series of videos, including practical tips and tricks, intended to help other kids and teens with scoliosis realize they are not alone. Ava shares her scoliosis story, including her experience (and success!) with bracing.

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Introduction from Martha Carter

It's wonderful to read Ava’s blog outlining her success story: how wearing a body brace stabilized her scoliosis, reducing her curve from 36 to 17 degrees.

There is actually a lot of controversy and conflicting studies around the pros and cons of bracing, as there are very inconsistent results. Because each body, curve/twist progression, and lifestyle are so unique, it’s difficult to compare one outcome to another—not to mention that many teens are understandably resistant to wearing an unsightly, uncomfortable and embarrassing plastic brace around their torso! (I’ve heard many stories of teens who leave for school with it on, only to hide it in their locker for the day, and then put it on again to return home)!

As a result of all of these factors, many teens still require surgery—even the ones who resolutely wear their brace for years.

That said, the exercise part is crucial. Let’s be honest, most teens are not always disciplined at sticking with their exercise programs. The fact that Ava persisted with a scoliosis-targeted physical therapy practice, starting at a young age, is/was game-changing. Of course, she was lucky to find a two week intensive Scoliosis Boot Camp where she was given a training program specifically to support her curve pattern! I imagine she also met other teens there, giving her the opportunity to develop a community of friends with shared interests - a crucial part of the puzzle to stay motivated, and not feel alone.

Unfortunately, these programs are not available everywhere, nor are they accessible to everyone. But, on the bright side, there is increasing access to online resources by way of instructional movement videos for scoliosis that can be practiced in the comfort of your own home. And since teens are very good at looking up things online, hopefully those who face the same challenge will find Ava - and be inspired by her story!

Avoid surgery if you can - follow Ava’s lead - find a Scoliosis Boot Camp (or at least consult with a scoliosis specialist) before anything else!

Ava’s Journey

My scoliosis journey began in 2019 when I was 14 years old. When I went for an annual checkup, my pediatrician had me do the forward bend test and told me I had scoliosis. I went for an x-ray and that evening the doctor called my parents to tell them that my scoliosis was worse than he thought. My curve was 36 degrees. When my parents asked how we did not know this, the pedestrian shared that he may have noticed it during the prior year’s exam, but did not say anything since he thought the curve was mild. We were so surprised, especially because I had never had any scoliosis-related pain.

My pediatrician referred us to a pediatric orthopedic clinic. The outlook did not look good.

My parents did a lot of research and decided to get care from a scoliosis clinic called Scoliosis Care Centers™, whose program focused on a non-invasive treatment approach to reduce the curve. We hoped I could avoid surgery.

I started with a two week intensive. It was a lot of hard work and a lot of pain and discomfort in the first few weeks. I learned exercises, had equipment customized for my curve, and a brace was made. I had a rigid exercise program and wore my brace for 23 for hours a day to stop the progression of the curve.

This journey has not been an easy one - but definitely worth it! I am 17 years old and have worn my brace for 3.5 years. I am beginning the ‘weaning’ process as my curve is now 17 degrees. I wear my brace for 10 hours a day and will continue to for another 9-12 months. I am so happy I no longer have to wear my brace to school ;)

During my scoliosis journey, I felt alone and sometimes scared. I have created a series of videos with the hopes of helping others with scoliosis with some practical tips and tricks as they learn what to expect when wearing a scoliosis brace. I am not providing medical advice, I am not a doctor… just a teen with scoliosis. I created this channel to help other kids and teens know they are not alone. I hope it provides comfort to know there’s another teen with scoliosis out there for you!

Ava’s videos can be seen at: https://youtube.com/@embracethebracewithava