Tay’s Scoliosis Journey: The Background Story

It was during a 12 year well child check up when we discovered Taylor has scoliosis. Quite honestly, the only reason we were there was to get Taylor’s vaccinations updated for school. Overall, she was healthy enough that I hadn’t really worried about getting yearly check ups.

Her pediatrician and I were mindlessly chatting through the routine exam. As she ran her fingers up and down Taylor’s spine, I remember thinking, oh she is doing a scoliosis exam. It wasn’t even on my radar that I would need to be concerned about it. It was just another check in the box. Obviously would have known by now if something was wrong. But mid-sentence her eyes got wide and she stopped talking. I knew immediately that something wasn’t right. Her doctor told me to come over and feel her spine. Taylor’s spine most definitely had a curve, and it was noticeable.

We went for an xray and her curve measured an impressive 38º. I did some research via Dr. Google to find out as much as I could about what this all meant. At the time the specialist that we saw said that surgery could be an option because it was considered severe, but also thought that if she wasn’t having any pain, it would just be trading out one pain for another. He said it would be best to keep an eye on it and recheck each year. He felt like it would most likely stabilize as her growth plate closed. It was with this doctor that we found out that her case was congenital. She was born with an extra vertebrae which had fused with the vertebrae around it.

The next year, we followed up with a pediatric orthopedic surgeon in Portland. Her curve had shifted a little bit, now 44º. This surgeon said it looked like it hadn’t changed much and the measurements can vary depending on who is measuring, so her spine was most likely stable. We set up an appointment to meet with his colleague who traveled to Medford a couple times a year so we didn’t need to drive up to Portland for a quick exam. It was still a wait and see situation.

Over that next year, things started changing and they changed quickly. Taylor started getting a little hunch in her left shoulder. I would remind her to sit up and that her posture was important because of her already curved spine. When we went shopping for a dress for a dance, I noticed that her torso wasn’t growing. Her legs had grown, but she had a really squatty torso. Her back hunch got more pronounced as the year progressed.

She started complaining about having some pain in her back. I told her I would call to make an appointment and realized I already had an appointment set up in a few weeks with the orthopedic surgeon traveling down from Portland. That is how we met her current surgeon. He walked in the room and we immediately started discussing surgery. He showed us the movement from the first to last x-ray. He hadn’t even ordered an xray for this visit yet and he could tell by his physical exam that her spine had shifted even more than the x-ray on the last visit showed.

Her spine wasn’t stable and would in fact get a little bit worse every year if we didn’t get it stabilized soon. Unfortunately, the changes in her spine over the past couple of years that also included a 49º kyphosis, which is an excessive outward curve of the spine, causing the hump in her back. This kyphosis combined with the now 50º scoliosis curve has made her case complicated and a little more risky.

There will be two pediatric orthopedic surgeons who are both specialized in scoliosis and spinal surgerys in the OR. She is having surgery at OHSU in Portland, which is also a teaching hospital where residents would generally be assisting the surgeon. Her surgeon has asked the second surgeon to assist rather than a resident because it is such a complicated case. If they decide to bring a resident in the OR, there would only be one and the resident would only be there for minimal support.

Her surgeon has a 3D replica of her spine and has been studying it for the past couple of months. He will have it next to him while he performs the surgery to use as a reference. She is excited because he said he would give it to her when he is done with it. He knows they won’t be able to completely straighten her spine, but they are hoping to correct the curvature by at least 50%. Her spine is pushed out to the left. The plan is to push it back toward the right as far as they possibly can while keeping the support necessary to successfully place the rods due to the kyphosis curve. It is our hope that her body will allow for as much correction as possible.

We would like to invite you to take this journey with us. Our story is here for us to process, educate, and inspire. We would love for you to celebrate, laugh, and ugly cry with us as we muddle through what comes next. Whatever lens you are viewing our story with, we welcome you.