The first time she bent over and I noticed a bump on her right side, I assumed that her training was too intense on her dominant arm. At 13, my daughter was approaching 5’10” and she was swimming 16+ hours a week as she prepared for her competition season. It was most noticeable to me when she climbed onto the starting blocks. As she pulled back to take her mark, I could see the hump protrude. Having faced injuries in the past, I approached my questions cautiously but without panic. The term “functional scoliosis” was unfamiliar to me, but our doctor believed that we needed to monitor and build muscle. We could do that.
Just a few months later, we were in the last two weeks of the season when the first signs of radiating pain appeared. After hiding the extent of the situation from us, at the last completion of the season my daughter admitted that we needed to dig deeper. From the road, I called an orthopedic surgeon and requested that we come in upon our return home. From the first x-ray, I knew that this was more than “functional.” Skipping all of the steps, I’ll take you to the final diagnosis – 3 spinal curves.
What is scoliosis?
Scoliosis is an abnormal curvature of the spine. Many times it is diagnosed in adolescence as the spine elongates and the growth further accentuates the curves. According to the American Association of Neurological Surgeons, 2-3 percent of the population is affected by scoliosis. Most are diagnosed between 10-15 years of age. Most Americans are familiar with the visits to the school nurse where children are screened for early signs of spinal curves. While this is a great step, my daughter was screed by both the school nurse and annually at her physical and no one caught the changes. We learned later, that often missed early indicators are hip pain and weakness {she had a hip injury at 11}, shoulder imbalances {watch your son’s football pads} and waist unevenness {does one side appear more curvy?}. At 14, she already had moderate curves that necessitated treatment.
Decision Time
There are two driving factors in scoliosis treatment. The first is the degree of curvature and the second is the skeletal maturity of the patient. Curves less than 20 degrees are often monitored closely, but do not require interventional treatment. Upon meeting with the pediatric spinal surgeon, we discovered that we fell in the middle ground. Her curves were moderate, and her skeletal maturity showed that her growth plates were not closed. Scoliosis curves progress with skeletal growth. The leading treatment to slow the growth of the curve in these years is bracing. For those with a 20-40 degree curve, doctors often recommend a hard plastic brace {worn 16-23 hours a day} to stabilize and push the spine against the curve. Patients that have a 50+ degree curve are candidates for stabilizing surgery. While these are the most common guidelines, there is no one path to treat scoliosis. Even among medical professionals, there are differing approaches. We weighed all of the factors and my brave daughter chose to be fitted for a brace. She was weeks away from starting high school, having some neurological side effects from exercise, and yet she could see that this choice was her best chance to protect her body.
In Her Words
I would love to tell you that the decision to brace was easy. It was not. Nor was adjusting to living 18 hours a day in the brace or learning to sleep, eat or ride in a car in the brace. Everything required adjustment. When she agreed that now was the time to share this journey publicly, my daughter granted me the gift of her journal entries. I had not seen these before this blog. In some ways, I am grateful. I’m not sure that I could have handled more emotions than what we were already experiencing in our house. But more than that, I am so freaking proud of her:
November 2019 – 2 months into the brace
“I was so close to wanting to give up and then I got the X-ray results in the brace and I realized the pain I am dealing with is actually doing something. It doesn’t make me stop questioning if it is worth the pain but it gives me some hope.”
December 2019 – 3 months into the brace
“Everyone keeps telling me we will figure it out. We will work it out. But what they don’t realize is that most of these things are not we. You can say it is a we thing but in reality it is not. It is my thing to figure out and live with. Because no one will know how I feel or what I am going through. It is my emotions. It is my body we are trying to change. It is my thing to live with. It is my brace I have to wear. At this point I feel really isolated.”
February 2020 – 5 months into the brace
“I finally told people how I really have been feeling. Between the amount of pain and the toll it has taken on me mentally. I’m realizing I should’ve been honest this whole time, I just didn’t know how to. A lot of people question if I am telling the truth or making things up to get out of something and it makes it 10 times hard because I want them to understand what I feel. But, on the other side, I don’t wish this pain and problem on anyone.”
A Light of Hope
Scoliosis is a life defining diagnosis. For an athlete, this journey further complicates the mental, physical and emotional aspects of sport that most 14 year-olds never experience. As we have learned and grown and studied and built a team of knowledgeable and teachable people around her, we have discovered that strong muscles, a strong mind and a well cared for spirit are the keys to her future. In addition to the brace and good physicians, we have embraced that this is a holistic journey. She has a trusted others to coach and support her in each of these areas. This required creativity, resources and willingness that I did not even know existed in our family a year ago. Yep, the original diagnosis of functional scoliosis was only a year ago. In this year, I have watched a scared 13 year-old own her body, recovery and growth in ways that I never believed possible. If there is one thing that scoliosis awareness has given our family, it is the knowledge that the bent path {or spine} may just provide the lessons and opportunities for the strongest warriors. There is no one in this world that has more heart and fight than my daughter, and this monumental year has solidified her drive to take on the world.
Scoliosis Resources
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I wore a brace 23 hours a day for 18 months while barreling asthma. It left me with a curve that did not progress any further, but an incredible weight gain. It has been 23 years since I first wore that brace and I still remember how torturous it was. Being an avid horse rider at the time, it was just one of the things I loved that I had to give up while being braced. If I could go back, I would absolutely refuse to be braced.