Elizabeth's Scoliosis Story
I was told I had scoliosis on December 24, 2015. I was scared and sad and confused. I had no idea what this would mean. I heard the words, brace and surgery, but did not comprehend any of it.
I will say I was excited to get my first brace. Being 10, it was like a new adventure. My 5th grade class was so supportive. I wore it with honor. I showed them my x-rays, and the brace became "normal" for all of us. I wore it faithfully for over 22+ hours a day. Mom and I began Schroth Physical Therapy in Boulder at Avanti Therapy in February of 2016. For 2 months or so, we went down 3-4 times a week. Mom and dad bought a Swedish ladder and set up a "gym" in my room so I could do my exercises each day. Mom helped with the exercises too, as they sometimes got hard and or boring also became a member of Curvy Girls Scoliosis Foundation at this time. I was asked to be the Northern Colorado leader. We have a small group of girls that have scoliosis and try to meet once a month in order to encourage and support each other. I have also been able to attend Curvy Girls Conference for 2 years. Here over 150 girls from all over the world come to support and encourage each other on our journey with scoliosis. This is where I met a lady who supports kids like me with scoliosis. She has brought many smiles to so many with look-a-like braces for their stuffed animals or dolls, and custom artwork.
Curvy Girls has given me the opportunity to be able to speak at Zimmer-Biomet (a company that manufactures the hardware used in spinal surgeries), take part in a fashion show and fundraiser sponsored by Move the World Operations to raise money for Curvy Girls, and even be interviewed on TV regarding Curvy Girls and my scoliosis. I have also been able to meet Jamie Haggard (who is developing a new brace for scoliosis from Green Sun Medical, Dr. Vitale from Columbia University, and Michele Romano from Italy.
After the first year, in 2017 my x-rays showed my curves DECREASED! I got a new brace since I was growing. I continued with therapy and brace wearing. But now that I was in middle school, I was much more aware of how "weird and awkward" my brace was. There were many days I struggled with my self image, some people being mean and rude (even if they were "trying" to be funny) and limited movement in the brace.
The fall of 2017 I had a HUGE growth spurt, and by February of 2018 my x-rays revealed that my curves were being stubborn. They had increased, although not in a severe way. But by the fall of 2018, the surgeons saw that they had increased to possible surgical range. Mom, my PT and I discussed many options. Mom and I flew out to PA to visit doctors who are doing a non-fusion surgical approach to correcting the curves and rotation of my scoliosis. Mom sent the information off to insurance, but they denied any and all coverage claiming the surgery was experimental, due to the fact that the tether is not FDA approved (although Mayo Clinic in MN, Shriners in PA and many other doctors are doing the surgery with success.)
When this occurred I was devastated to have my health choices made for me by people who didn't even know me!!! This surgery no longer seemed an option. Mom, dad and I weren't sure if we wanted to pursue fusion quite yet. And the brace, oh the brace, was driving me crazy. I am in 8th grade now, and I just want to be "normal" without the brace as a focus of who I am. My friends and teachers and staff at Preston Middle School have been very supportive in accommodating me with this brace the past 3 years. I really thank all of them from the bottom of my heart.
So now, I continue to wear it, and do exercises and wait to see about insurance, money and what my aggressive curves will do.
Move the World Operations has graciously started a GoFundME page to try to pay for the surgery out of pocket. My local Curvy Girls group and I will also be a part of their fundraising this summer for a support walk and Fashion show and brunch to raise money for CURVY GIRLS in Denver area on June 30th!
Scoliosis will always be a part of my life. So many people have shown their love and support. I know my family and I just want the best possible outcome in this whole situation. And yes, we also want to make sure that God is given the glory and honor, no matter what direction my curves or this journey takes.