My Journey with Scoliosis: From Diagnosis to Surgery

Last Updated Friday July 5th, 2024.

The Silent Struggles of Scoliosis

Scoliosis is a condition that often remains hidden from the everyday eye, only becoming noticeable when it progresses significantly. It’s one of those silent ailments that often leads people to say, “You look fine; how could anything be wrong?” If scoliosis had a personality, it would be sneaky, sophisticated, and persistent. It does its initial damage below a person’s conscious threshold of pain, making it difficult to detect, let alone treat.

Living with scoliosis can have a profound impact on a person’s life, both physically and emotionally. The condition can be draining in every sense of the word. At different ages, the challenges of scoliosis manifest in varied ways. For a child, being diagnosed with a condition they know nothing about can be overwhelming. If scoliosis causes pain, it can be hard to stay active or maintain good spirits. The asymmetric appearance that often accompanies scoliosis can also lead to self-consciousness and emotional distress.

In this blog, we delve into the story of Starr, who has navigated the complex and often invisible struggles of scoliosis. Her journey sheds light on the real-life challenges and triumphs of living with this condition.

Discovering the Diagnosis

At 12 years old, I went to my yearly check-up appointment, expecting it to be routine. It started like any other visit with the usual checks: height, weight, and vitals. After a few standard tests, my doctor asked me to bend over and touch my toes. This was a first, and I was curious. As a kid in a doctor’s office, you just do what you’re told without questioning it. As I bent over, I heard my doctor say, “Uh-oh.” Her reaction left me puzzled and a bit anxious.

My doctor explained, “When you bent over, I noticed a hump in your thoracic region. This typically indicates scoliosis.” As a child, I had no idea what scoliosis was. Was it a disease? Was it something serious? She reassured me that the best way to confirm scoliosis was through an X-ray, so she ordered one at our local hospital. My mom also requested an X-ray from our chiropractor.

The results were confusing. The hospital X-ray showed a 17-degree curve, while the chiropractor’s X-ray indicated a 27-degree curve. The treatment plans for these measurements are vastly different. A 17-degree curve usually requires just monitoring, but a 27-degree curve might necessitate bracing and therapy. We needed a definitive answer.

My general practitioner referred me to an Orthopedic Spine Specialist at our local children’s hospital, about an hour away. Dr. Lewis, the specialist, measured my Cobb angle at 23.5 degrees. He decided that I needed a TLSO Boston Brace to manage my scoliosis. After taking a few measurements, I had to wait about two weeks for the brace to be made. They couldn’t take imaging of me wearing the brace until six weeks after my appointment, so the waiting began. This was just the start of my journey with scoliosis.

Life with a Boston TLSO Brace

Adjusting to the Boston TLSO brace was a significant challenge, both physically and emotionally. Wearing a back brace while trying to fit in at school was a daily struggle. Though I wore it under my shirt, it was hard to hide. Sports were particularly tricky since I had to change in front of everyone, leading to uncomfortable questions and explanations whenever someone noticed the brace during a hug or pat on the back.

Sitting through classes and sleeping with the brace on were particularly uncomfortable. I wore it all day, every day, throughout seventh and eighth grade. Simple tasks like picking things off the floor, bending down, or even tying my shoes became new challenges. The brace was restrictive and awkward, making it hard to navigate everyday activities of a teenager.

Socially, the brace was a constant hurdle. I never let it hold me back, but taking it off and putting it on in front of everyone for sports was embarrassing. The Boston brace doesn’t allow for rib expansion, making physical activities difficult. Emotionally, I felt like I adapted well, though the support of my family and friends was crucial. My parents ensured I wore the brace consistently, and my friends were always there to help me adjust to new ways of doing things. Despite their support, it was still hard to avoid feeling insecure or worried. I tried to focus on the positives and keep my mind on the next task, knowing that eventually, this challenging period would come to an end.

Monitoring and Progression

Every six months, I returned to OU Children’s Hospital for checkups. These visits involved x-rays of my spine from top to bottom, monitoring both the coronal and sagittal views. Despite wearing the brace, my curve got progressively worsened, although this was somewhat expected since the Boston Brace is designed to slow down progression rather than reverse it. The goal was to avoid surgery.

From August 2013 to March 2014, my curve increased from 23.5 to 34 degrees, and by August 2014, it had reached 37 degrees. At this point I was classified as Risser 4, meaning my bones were nearly done growing, and the hope was my curve wouldn’t progress to the 50-degree surgical range. The plan was to switch to nighttime bracing for the next six months and then potentially stop bracing altogether.

As my curve worsened and I outgrew my brace, new challenges arose. The old brace started leaving bruises on my hips, becoming increasingly uncomfortable. I needed a new brace, which required modifications and led to a few weeks without wearing any brace at all. This break felt like starting over when I finally got the new brace.

Progression Despite Bracing

In 2015, I was supposed to return for a follow-up appointment in March, but we had lost our health insurance. Despite this, I was feeling good and eager to be done with the brace. We were under the impression that my condition wouldn’t worsen in the final six months of bracing, as it was mainly a precautionary measure. My chiropractor didn’t think my curve had progressed, but we didn’t have X-rays to confirm this. By September 2015, I began experiencing occasional discomfort and pain, but I didn’t think much of it.

The following year in March 2016, my rib hump became more noticeable, and people started asking about the prominent rib hump on my right side. By August 2016, I was in significant pain, which drained my motivation and energy. Looking at pictures, I could see my right shoulder drop and the shift in my posture, even though I thought I was standing up straight. Despite the pain and self-consciousness, I continued participating in marching band, sports, and work. I reasoned that if I was going to feel bad, I might as well be active rather than doing nothing.

Without insurance, we couldn’t afford doctor visits, especially to specialists. We decided to stay healthy and get chiropractic adjustments, believing everything would be okay. In the summer of 2016, my mom got a job at Walmart, and we would soon have insurance again. Not wanting to worry my parents, I didn’t mention the increasing pain or aesthetic concerns, thinking I could wait until we had insurance.

The Decision for Scoliosis Surgery

In late 2016, we scheduled an appointment with a new orthopedic doctor, Dr. Chong, because my previous doctor was on a mission trip. That morning, we got ready as usual, stopping for gas, snacks, and drinks. I ran into one of my soccer coaches and mentioned that I hoped to avoid surgery, but I was aware my condition had likely worsened since my last 37-degree measurement almost two years prior.

At the appointment, everything seemed routine until we met Dr. Chong. He apologized, which I knew was not a good sign. He informed us that I needed spinal fusion surgery as soon as possible. My thoracic curve had reached 60 degrees with significant rotation. Despite being a Risser 4 case, my curve had progressed rapidly and would continue to worsen despite skeletal maturity. Dr. Chong warned that delaying surgery could lead to severe complications like organ collapse or heart problems by age 21. He explained that the pain I was experiencing would only intensify, making surgery inevitable.

After receiving the news, I cherished every moment. I didn’t know if it might be my last time doing these activities due to the risks and complications of back surgery, and the recovery alone would take at least six months if all went well. I remember my last soccer game vividly; my coach let me play any position I wanted, so I chose goalie for fun. It was a bittersweet moment, filled with uncertainty but also a determination to face the challenges ahead.

Scoliosis Surgery and Recovery

The night before my surgery was filled with indescribable emotions. I dreaded seeing everyone worry and hurt because of what I was going through. I was terrified of coming out of surgery paralyzed or with other complications. After months of anxiety, I was ready for it to be over, trusting that God had a plan, no matter the outcome.

The morning of the surgery was an early start. We had to be at the hospital by 5:30 AM, meaning we left the house at 4:00 AM. The pre-surgery process involved numerous tests, questions, and vital checks. My surgery, scheduled to start around 7:00-7:30 AM, lasted until about 5:00-5:30 PM. They fused my spine from T2 to L3 using two rods and twenty screws. My curve had progressed to 65 degrees by then, and they managed to reduce it to about 17 degrees, which was a remarkable improvement. The rods used were Cobalt Chromium instead of Titanium.

I remember very little from the day of the surgery itself due to the heavy medication and anesthesia. The next day, they had me up and walking, starting physical therapy immediately. Occupational therapists came by for walks and wheelchair rides around the hospital. It was tough; I felt super stiff, but the medication helped.

The ride home was miserable with all the bumps and shaking on Oklahoma’s rough roads. They had set up one half of the living room as a bedroom for me, so I could be accessible and still part of any gatherings. The first few weeks at home were incredibly hard, with lots of sleeping, pain, and relearning how to move on my own.

The Recovery Process

Three weeks post-surgery, I started going back to school for half days, and a week later, I returned full-time. The first three weeks were the hardest, but returning to school and normal life improved my mental health. I was ready to feel like myself again and be active.

After surgery, my mobility was severely limited. I couldn’t bend, twist, or lift anything heavy. Even turning my head felt impossible; I had to move my whole body as one unit. I had to learn to squat or crouch instead of bending over, and simple tasks like getting dressed or getting in and out of vehicles were difficult. At 15, I needed my mom’s help to dress and shower.

This experience gave me a new perspective on everyday tasks. I learned to appreciate the small movements and activities I had previously taken for granted. The ordeal taught me strength, perseverance, and gratitude for my support system. Although it was challenging to regain my strength and athleticism, and I never felt quite the same again, I was thankful for the positive outcome without any severe complications.

Overall, the surgery and recovery period were incredibly challenging, but they also taught me valuable life lessons. I learned to adapt, appreciate the support of those around me, and find strength in the face of adversity.

The Journey of a New Purpose

The surgery and recovery were transformative experiences that greatly influenced my outlook on life. Despite the inherent difficulties and challenges, I was blessed with one of the smoothest recoveries possible. As an adult, the experience bothers me more than it did as a teenager, but it also made me appreciate every aspect of life. I’m grateful for the improved aesthetics, which boosted my confidence significantly. I would rather have a scar and slightly uneven shoulders than rib humps and a severe spinal curvature. This journey taught me to appreciate simple everyday actions like getting dressed or getting out of bed, and it made me grateful for the pain-free years.

During my time in the hospital, especially around the holidays, I noticed many kids stuck there, unable to celebrate with their families. This inspired me to start a toy drive at my school the following Christmas. We collected toys to send to the hospital for those kids, and this act of kindness changed my perspective. It gave me a sense of purpose and a deeper appreciation for the everyday things most of us take for granted. The toy drive helped shape my outlook, showing me the power of giving back and the importance of community support.

Life After Scoliosis Surgery

Initially, the first three weeks post-surgery were incredibly challenging, but by three months, I felt great, and at six months, I was released from medical care. During my junior year, I played baseball, but senior year brought new challenges as I tried to participate in track. My body never fully regained its pre-surgery athleticism and strength.

As an adult, I have to make the best of each day despite chronic pain and discomfort. Staying busy helps distract from the pain, but relaxing at night can be particularly tough. Every day ends with physical exhaustion due to the pain, regardless of how much or little I did. While my condition could be worse, most days are a struggle. I choose to keep moving and stay active because being sedentary makes the pain even worse.

The prospect of needing another surgery or dealing with a broken or loose rod or screw terrifies me. Post-surgery, there isn’t much guidance for the future. After being released six months post-op, the support diminishes, leaving me as a problem for adult spine specialists. My limited mobility presents challenges, but I find new ways to adapt or embrace the awkwardness of my movements. I’m concerned about childbirth and staying active with my future children. I don’t want to become a pain-ridden, inactive older person. As I age, my pain intensifies, which worries me about my future quality of life and ability to engage in activities with my family.

Rediscovering Hope through Helping Others

Discovering Scoliosis Care Centers (SCC) was an unexpected blessing that significantly changed my life. I was about to graduate with a Bachelor’s of Science in Kinesiology and was planning to pursue a Master’s degree in Occupational Therapy. With over a year before starting my master’s program, I decided to explore job opportunities to utilize my bachelor’s degree.

During my search, I came across a job listing for a Scoliosis Therapy Aide. The position was over an hour away, and I initially felt under qualified, but the prospect of working with children with scoliosis was too compelling to pass up. I didn’t even know that non-surgical scoliosis treatment options existed.

Discovering Purpose at Scoliosis Care Centers

To my surprise, I was hired and soon found myself training in California. From the very first day, I knew I had found my calling. The training was intense, especially on busy Monday mornings in a new place with a full schedule of patients for the week. Despite the challenges, I loved every second of my job. Over the next three weeks, I learned a tremendous amount, not just about scoliosis therapy, but also from the children I was helping. Watching them achieve and surpass their goals, seeing their progress, and witnessing their smiles brought me immense joy. Their resilience and determination were inspiring, and I found great fulfillment in being a source of support and inspiration for them. They helped me just as much as I helped them.

This new role brought a renewed sense of purpose and fulfillment to my life. Before finding this job, I had tried to ignore my own scoliosis journey and simply deal with the daily pains and discomforts. I adopted a mindset of acceptance, acknowledging that things could be worse. However, working at Scoliosis Care Centers changed my perspective entirely. Now, I wouldn’t change anything about my past. Although I had once wished my scoliosis experience never happened, I realized that it had led me to a place where I could help others avoid surgery. If my journey could save even one child from undergoing a spinal fusion, it was all worth it.

Impact and Inspiration

I never considered my story to be particularly special. I knew back surgery was a big deal, but I felt that everyone faces significant challenges at some point in their lives. However, sharing my story with others, especially children and their families, revealed its potential to inspire. Many people were moved by my experiences and saw hope in my journey. It became clear that there is much more to surgery than doctors often explain, and hearing my story offered a different perspective.

As a surgery patient advocating for holistic approaches, I knew my stance carried weight. Many surgery patients hesitate to embrace non-surgical methods because they don’t want to acknowledge that there might have been another way. However, I realized that my experience could help hundreds, if not thousands, of children avoid surgery. It was okay that I didn’t have access to this treatment as a teenager because now, I could guide others toward it and potentially change their lives.

Gratitude and Looking Ahead

Looking ahead, I hope to continue inspiring and helping children and their parents. I aim to play a significant role in reducing the need for scoliosis surgeries and improving outcomes for those who have already undergone surgery. My goal is to advocate for early intervention and MRI screenings to become standard practice. I am committed to growing and learning in my role at Scoliosis Care Centers and am excited about the future. I want to make a lasting positive impact; helping as many children as possible avoid the hardships I endured and find a path to a healthier, pain-free life.

Reflecting on my journey from diagnosis to surgery and beyond, it’s hard to put everything into words. At the time, it was just something I had to go through, and I didn’t dwell on it much. Now, working at Scoliosis Care Centers and experiencing life after surgery has made me think more deeply about what I went through. This journey has shaped who I am and led me to where I am today, which I am grateful for. Despite all the challenges, I am doing more than I could have ever hoped or imagined at 23. I am blessed by the journey and the growth it has brought me, helping me learn who I truly am.

Empowering Advice and Encouragement

To anyone facing similar challenges, my biggest advice is to make the best of every day. Life is already hard enough without our reactions making it even harder. Every day might not be easy, but it is possible to get through it. Stay strong mentally, physically, and nutritionally; it makes a big difference. Mental health has been crucial for me; if I can stay strong mentally, I feel like I can do anything, and so can you. Remember that your mindset is key—focus on what you can do, and keep pushing forward.

I invite you to share your own stories and experiences with scoliosis. You never know who you might inspire or where sharing your story might lead you. Your journey could touch someone’s life in a meaningful way, and sharing could open new opportunities for you. It’s a long, hard journey, but remember, we are not alone. Let’s support each other and make a difference together.