In honor of scoliosis awareness month, I’m sharing my story of adolescent idiopathic scoliosis and how my surgery has contributed to the happy and healthy life I live today.
Diagnosis and the awkward years
Before I had my scoliosis surgery, I was an average middle schooler. I was a little awkward, but I had a good group of friends. We’d pass notes to each other in between class and after school, we’d talk on the phone about the boys we had crushes on.
When my family was preparing to move to a new state, my scoliosis was discovered during the routine physical exam. My parents didn’t miss a beat getting me in front of doctors that could help. This was back in the late 90s, so there wasn’t much available on the internet (though this still holds true today for scoliosis information).
My care began when we lived in Lima, Ohio. I was fitted for a Charleston brace that I wore at night. I saw my doctor somewhere around every 3-6 months. Once it became apparent to my pediatrician that my case was outside of the scope of his expertise, he referred us to a man he called a “magician” for idiopathic scoliosis.
The path towards surgery
The “magician” was Dr. James Lehner. Dr. Lehner continued to monitor me as I moved on to a Milwaukee brace that I also wore at night. It was a long drive to Dr. Lehner’s office. Fortunately, my stepmom was able to be a stay-at-home mom with my dad’s new job. I want to believe this made things a little easier when it came to the hour and a half drive to my appointments.
I got used to wearing my braces at night, but these braces were no match for my rockstar curves that continued to progress in all their glory. Because of the progression, my parents were faced with a big decision: whether or not their 14-year-old daughter should have scoliosis spinal fusion surgery.
My stepmom says it was a matter of answering the question “what is best for Carlyn?” Surgery can’t guarantee a pain-free life, but it can protect the organs from the imposing curvature of the spine. For my parents, this was enough to say surgery was the way to go.
My dad being an anesthesiologist made navigating the medical aspect a non-issue. I remember him talking so calmly to the nurses and with my doctor. I never felt inferior, but like we were all on the same team and the team was rallying around me. That’s not to say I didn’t get upset (very upset) throughout the process. There were many tears out of frustration with it all. I didn’t understand why the braces didn’t work. I was putting in this effort and seeing how fruitless it had all been. And on top of it, I didn’t understand why I had to go through this. Why was this happening to me? Regardless, on the coattails of the Y2K uproar, I had my surgery when I was 15 in early June of 2000.
Thankfully, I can see things more clearly in hindsight. This clarity allows me to share my experience with you now. I recognize how fortunate I was to be in a family where we could afford the time and money it took to address my condition and I received high-quality care. I understand that having a father that is a physician comes with a certain degree of privilege and an ability to work with the system rather than feel outside of it. I want that for you too. So much of western medicine can be scary because it feels foreign and complicated. Doctors are there to serve us. They want to help us. The better we understand their role as well as our own, the easier it is to communicate our needs in a way that can be heard. And we deserve to be heard.
Post-fusion surgery and beyond
I wore a 24-hour brace for six months after my surgery. My incision (on my left side) healed well. My dad cleaned and bandaged it for me for the first few weeks back home.
Over the course of the year following my surgery, Dr. Lehner continued to monitor my curves. My lower curve looked great. It took to the fusion well. The upper curve, however, was a bit of a diva. While the upper curve initially reduced in size, it seemed to go back and forth in terms of getting a little better, a little worse, then better again. Dr. Lehner explained to me that it was likely going to continue to be this way. Like a tree in the wind, the branch would go back and forth. He said out of his hundreds of cases, he’d only had 4 others like mine. That made me feel awful. I didn’t like being different in this way. When it comes to health and the body, I want to be normal. Despite my punk rock mindset, this was a case where I really wanted to be… average.
Dr. Lehner said I could have the upper curve fused if I wanted. I confidently said “no” to this proposal. This was my first taste of empowerment and it felt good. Having a say in what would be done with my body hadn’t been a part of the conversation until this point.
Now, as a grown woman, I still have my spinal fusion on my lower curve and my upper curve is still that tree in the wind. I’ve learned a lot with regards to my emotional state as I’ve come to understand the feedback from my back as it gets agitated by life’s stressors.
I have discovered the following:
a bad boss = dull achy pain in my left thigh (stemming from lower back tension)
bad boyfriends + codependent behaviors
=
tightness in between shoulder blades and pain in shoulders
poor boundaries = widespread tightness and tension
Where I find myself today
I’m learning the importance of addressing and eliminating stress from my life.
I currently work as a contractor while I find the right fit professionally. Work has been a tricky effort as I’ve been in male-dominated industries that thrive on reactivity. I’m currently in a role that is balanced and I have confidence in my skills and abilities which gives me peace of mind towards my work.
I have a special relationship with my family.
The cat’s getting let out of the bag here, but I have to say it… I milk the special treatment from my family where I can get it. I’m not above that at all. I don’t take advantage by any means, but I do appreciate how considerate and thoughtful they are to make sure I’m comfortable and doing well. My parents and my sisters have taught me what it means to have an attitude of gratitude. To care and be cared for fills my heart up and I have been quite blessed by the family I’ve been given.
I have a boyfriend who is incredibly caring and kind.
I met Dan last September. After a few months of friendship, we started to grow together. Once a foundation was built in open communication, we began a romantic relationship. Having time in the beginning that was free of expectation or pressure helped us respect each other’s boundaries as we learned what it meant to be supportive and loving to one another in a healthy way. While we don’t have this mastered by any means, it’s comforting to know we’re developing tools to help us get on track when we hit bumps in the road.
Sometimes when I’m driving in my car, I’m surprised at how relaxed my body feels on just a regular day. I used to have to do something to feel this way. I’d have to get a massage, or do an intense workout, get an adjustment, meditate. I have done all of those things over the years, and these practices have helped me find what it means to simply be.
I still struggle with a few things as they pertain to my appearance. Like my hair. Will I ever figure out the ‘natural’ look?? And makeup. When I see one of those makeup-free selfie challenges, I ask myself “is it expected that I wear makeup most of the time?” On a positive note, as I’ve mentioned in other posts, I do love my dresses. I’ve found dresses that make me feel so good when I look in the mirror. I have noticed over the years the way certain dress cuts don’t seem to look right on me. I think it has to do with the rotation around my rib cage and a lack of symmetry across my body. Recognizing how I feel, I’m enjoying clothes that make me feel beautiful and find opportunities to wear them. Even if it’s just a quiet night with Dan cooking me dinner at home, it’s not uncommon for me to come over all dressed up :)
There’s a lot of debate around whether or not surgery is the right solution for scoliosis. It’s my personal belief that such a public discussion is insensitive and potentially harmful. Scoliosis surgery can be a polarizing topic and some viewpoints are aggressively negative. Scoliosis treatment is as unique as the individual facing the condition. There is no right way. There is only the best way given present circumstance. One constant in life is change. If we plan for what we can control, we can better adapt to unexpected obstacles. While the surgery was the best choice for my teenage self, I have found great comfort and healing through natural methods that I have turned into habits for a life that I love.
Sometimes I wonder if I’ll ever have the rod from my lower fusion removed. But then I remember it’s best to avoid fixing things that aren’t broken. Just like my arm or my leg, my fusion is a part of me and my journey has made me both physically and mentally stronger.
The lesson I’ve learned through all of this is how to let go of the way I wish my body was so I can enjoy the way that it is. I had to grieve what I thought life was going to be like so I could accept the one that has been given. Even posting this is a step forward in self-acceptance and healing. Thank you for taking the time to read about my experience. If you have comments or questions, please leave them below so others may learn from our shared stories.
xoxo,
