Illinois

My name is Lainey. I am 16 years old (as of 2025), and I enjoy playing tennis, cello, and dancing (especially tap). I got diagnosed with scoliosis in the shape of an s-curve when I was three years old, and I got my back brace a few months later.  Although I do not remember much about my early days of bracing, it got harder as I got older. It made me uncomfortable. However when I was 12, my curves had become big enough for my brace to be ineffective, meaning I needed spinal fusion surgery. This was frustrating for me because it felt like all of those years of wearing my brace had been for nothing. Furthermore, I was worried the surgery would impair my ability to play tennis and dance, since my fusion would be very large (likely down to L4). That led me to VBT, which I was a strong candidate for.

Despite insurance issues and the hospital being 6 hours away, I got VBT on my thoracic spine on June 2nd, 2022, when I was 13 years old. My thoracic curve went from 50 degrees to 30 degrees, but I still had a significant 40-degree lumbar curve. My surgeon thought my lumbar curve would straighten out as a reaction to my top curve being straightened, but it progressed to 55 degrees instead. This meant I needed VBT on my lumbar curve, which I got on December 22nd, 2023. The recovery from this surgery was more difficult, but it reduced my lumbar curve to 35 degrees, meaning it was now balanced with my top curve. But in March of 2025, I found out that my bottom tether broke too early, causng my curve to increase to 45 degrees. This means I will need a tether revision surgery. This will involve my tether being repaired, another tether being placed, and a one-to-two level fusion at the apex of my curve (T12-L1). Despite my little growth remaining, I am grateful I have an option that will preserve a large chunk of my mobility. I hope that my story reminds others that scoliosis stories can come with lots of curveballs (pun intended), and that it is ok if they do not go as predicted.

Overall, the physical pain of bracing and surgery is difficult, but most people with scoliosis agree that the worst part is the emotional pain. From anxiety for what will happen at the next appointment, frustration because you do not know why this is happening to you, and most of all loneliness because you do not know anyone with scoliosis.  Throughout my journey, I was left wishing I had a meaningful connection with someone who understood these emotional difficulties. While I had gotten to talk to other girls who had VBT and spinal fusions over the phone a couple of times, I lacked a long-term friendship with someone in a similar situation. I decided to start a Curvy Girls group in Chicago to give others the support I did not receive, because no one should have to go through scoliosis alone.