My Scoliosis Journey

School Life and Bullying
I often went to the school restroom and ate my breakfast behind locked doors to feel safe. I never understood why they hated me so much. Teachers looked away, and my parents didn’t take me seriously. They always said, “You just have to be more quick-witted.” Sure! Let me find the button to turn on my quick-wittedness. Nobody knew about scoliosis, and very few cared to know more about it. Winters were cold in Germany, and I hated getting back into my brace after my morning shower. I placed it close to the heater, but it didn’t work well. I remember my prom night. My sister gave me a beautiful black dress with a waterfall neck, a long back neck, and an asymmetric cut (great for scoliosis *laughing*), plus some high heels. My classmates had never seen me in a dress and certainly not without my brace. I got compliments, but I wasn’t sure if they meant it. Did I mention that I had no friends at school? It doesn’t have to be the same for you. Most certainly, times have changed, and kids are more self-confident, which helps massively to get accepted. Kids wear the brace with more pride, even above their normal clothes. I hid mine below baggy boy’s pants and XXL shirts. Every six months, I went back to my orthopedist for another X-Ray. I was a very disciplined patient, always wearing the brace and doing my physiotherapy and exercises. I was shattered when I saw my latest image of my curves. It got worse! Way Worse! My curves were now about 45° of Cobb angle with an even bigger rotation. How was this possible? It was very frustrating, and I doubted myself. We got a recommendation for a rehabilitation therapy called the

Katharina Schroth Method.
My health insurance didn’t want to cover it because, back then, there were too few studies proving its effectiveness. So, we saved money and received a generous donation, allowing me to go for three weeks.

Rehabilitation Journey
In 2005, I had the best time of my life (!) at the Katharina Schroth Clinic in Bad Sobernheim, Germany. I was among other people (young and old) with spinal deformities. I was not alone anymore. I felt understood and finally welcomed. I made friends, and by the way, I’m still friends with my group from eight years ago (my second time in Rehab in 2016). The schedule was full and very hard. We had our first group class early in the morning after all patients did a warm-up outside with their little rice-cushions and some music (IYKYK). Later in the day, everyone got individual therapy, like massages, breathing techniques, and ergo-therapy. We also received a booklet with our individual exercise plan, which we had to follow every day. The therapists signed off on each exercise we completed. It was a great group dynamic, and we cheered and supported each other. I miss that time. I finally felt some kind of normal. I improved my curve by 16 degrees and grew two centimeters taller within only three weeks. That’s an amazing result! Doctors were expecting a five-degree improvement if I gave 100%. Unfortunately, my health insurance wasn’t interested in my results and never approved another rehab (before surgery). They would rather pay for surgery, medication, rehabilitation, and therapy than an annual rehabilitation that worked for me. I also noticed that I was not alone with my eating habits (disorder). Wearing the brace put a lot of pressure on my organs, making me feel nauseous after eating. I couldn’t keep food and drinks down. I also tightened my brace to the maximum to look slimmer in my clothes. I was always a little chubby, and I felt how much weight I lost since wearing the brace. I just wanted to be thin and look pretty like the other girls in my class. The only food I didn’t throw up was oats with 0.1% fat milk. My family sometimes laughed at me, saying I was eating like a goose. I also spent some meals in the toilet. I felt very alone and misplaced. I even stopped using body lotion because I thought the oil in the cream would make me fat. Scoliosis mostly doesn’t come alone. It can bring depression, pain, eating disorders, and more, or all of the above. In my case, I was challenged by all of them. P.S. After more than three years of constant wearing the brace, I took an axe and let all my frustration out. That was the therapy I needed! *Joking*

Surgery and Recovery

The pain got so bad that I couldn’t sit, stand, or walk for long. It felt like my ribcage got stuck on my hip when I walked. The years before my spinal fusion surgery were some of the hardest. I had suicidal thoughts. One day, I almost jumped in front of a bus, but just before stepping onto the road, I saw into the eyes of the bus driver and felt empathy for him. How could I do that to him? I cried and ran home. I told my dad how I felt, and it seemed nobody realized how much I was suffering. They knew I was in pain, but they didn’t understand the extent. I had my brave face on for a long time. What’s the point of whining all day if you can’t change anything? So, I didn’t complain. My parents asked how they could support me. I had plenty of other options, such as treatments, alternative medicine, and therapies, but I just didn’t want to live with this pain any longer. In 2014, shortly after discussing with my parents, I did some research and found a hospital, in northern Germany with great recommendations. There were more options, but I went with my gut feeling. I made an appointment, and my dad drove me all the way up north. We had lots of questions and got only some answers. The latest X-Ray showed a Cobb angle of about 65°to almost 70°. The spinal surgeon made it clear that if I dont’t have the surgery soon, my scoliosis would progress maybe one degree each year. That might not sound like much, but it could become 10 degrees within 10 years. The surgery was scheduled for about six months later. There were some preparations, such as donating my own blood. I couldn’t donate because my iron count was too low, even with supplements. I stretched every day before another X-Ray to show my flexibility, helping the surgeon decide how much he could correct my spine. The daily stretching paid off! I also tried to strengthen my muscles to avoid losing too much muscle mass during the sedentary weeks after surgery. The day came. I wasn’t too nervous. Honestly, a dentist appointment freaks me out more *laughing*. I had read a book weeks before, “Life Without Limits” by Nick Vujicic, who was born without arms and legs. His story was inspiring, and I learned that I could still do anything I wanted if I really wanted it. He swims, surfs, plays golf, manages a smartphone, and more. Most of our limits are in our heads or things we’ve been told. You don’t have to believe anybody. If I had believed everyone who told me I couldn’t do something, I wouldn’t be a personal trainer and pain-free today. My dad and I arrived a day earlier and enjoyed some great food (Fish Sandwich, it’s a every North Germany-Thing). The next day, we arrived at the hospital around 8AM. The nurses prepared me for surgery at 9AM. They also did a small enema. Don’t worry, it wasn’t a mess. A nurse scratched certain parts of my skin on my thighs with a kind of sandpaper to attach pads for neuro-monitoring. Neuro-monitoring checks your nerves during surgery. If the surgeon comes too close to the nerves and spinal cord, they see an alert on the screen and “undo” the last procedure. It’s not fatal, but there’s always a risk. I got a hospital dress, white with blue dots, and a pill to make me less anxious. I was ready and prepared. They pulled me into an elevator, and when the doors opened, I was already in the operating room. One nurse asked if I was scared, but I said, “No, I feel fine.” She looked surprised. They put needles in my arms, and then the mask came. They asked me to count down from 10. Ten, ni…and I was out. They say, when you think about something nice before they put you to sleep, you’ll dream something nice. They had planned a 4.5-hour surgery, but it went two hours longer than expected due to complications they never told me about. My dad said they called him to the surgery room. Later, I read in my files that they did a “Wake-Up Test,” which is very rare. They wake you up during surgery, and you have to move your legs, not just the big toe. Don’t worry, they’ve pumped you full of drugs, so you won’t feel anything. It feels like a dream you can barely remember. But I don’t believe that was the only reason why they called my dad into the operation room (and he can’t see blood *laughing*). After surgery, I woke up in the ICU. 3 centimeters taller and „screwed up“ from T5-L3 (I have only 4 lumbar vertebrae from birth). My dad and a friend were there, holding my hands. My dad asked me to press his hand. I tried, thinking I was pressing, but I wasn’t. I couldn’t move my left arm. My dad got scared while I was still in drug-heaven. The nurse pulled a needle out of my upper back or spine (I can’t remember clearly), and then the pain hit hard. I fainted. The next day, I left the ICU and went to a room with another girl who also had spinal fusion surgery. She seemed fine and said her pain wasn’t intense. People cope differently with pain. She was more afraid than I was. I tried to sleep as much as possible. Every move felt like ripping the scar open. I’m not trying to be dramatic; it’s just how I felt. For context, I didn’t notice most of my bone fractures as a kid. So, when the nurse asked my pain level from 0-10, I was at a 7, sometimes 8. The nurse was caring and understood my “7” was different from my roommate’s „10“. She gave me as much medication as allowed, but the pain didn’t improve. The first day after surgery, two nurses helped me get up for the first time. I thought I’d pass out, and I did. We tried again, this time with vomiting. Finally, I stood. Can someone pass me the bin, please? I couldn’t eat for the whole 10 days I stayed at the hospital. I was constipated from the medications. My iron level was low, so they gave me blood infusions and “Kräuterblut,” a natural herbal supplement for iron. I lost almost two liters of blood. Usually, they reuse the blood lost during surgery, but it wasn’t enough for me.

Post-Surgery Struggles and Progress

On the second day, I noticed my right hip was burning, both hot and numb, with goosebumps. I got an ice pack but couldn’t feel the cold. I was hypersensitive to touch or even clothes on my skin. I never felt this before. A large area on my back felt numb. The nurses didn’t pay attention, saying, “It will go away.” A physiotherapist helped me get out of bed and showed me stretching exercises and squats. He made it clear that if I didn’t start stretching now, it would take longer to regain flexibility. I’m very grateful for him. I was disciplined and did my homework. I also got a device to train my lung capacity. I couldn’t walk initially, but I always wanted to use a Zimmer frame *laughing*. Visitors came, driving long distances to see me. I felt special, even though I looked like a drug addict and couldn’t show appreciation. One night, my dad sneaked into my room at 3 AM (not sure how he got into the hospital), brought flowers, brushed my teeth, and gave me a wave of energy. I showed him I could walk with the Zimmer frame. We both had tears in our eyes. He put me back to bed, and I fell asleep immediately. Every day was different, with ups and downs. Just before leaving the hospital, my blood levels dropped again. I feared staying longer, not knowing how to get out of bed at home without help. The next day, my levels improved, and they discharged me. My dad prepared his car with all cushions and pillows he could find for comfort. He dropped me off at my mom’s house, where she cared for me. I still couldn’t eat but craved raw egg and beef tartar mixed together. I ate a little spoon, and it was exactly what I needed. She also made me her special green smoothies, „Thanks Mom!“*ironic*. I lost already10kg bodyweight (probably more muscle mass than anything else), so my body craved protein. Many people helped me, including family, friends, and even ex-boyfriends. I must have done something right in my life. The next weeks and months were busy with walking and moving as much as possible. I was still in severe pain, taking morphine, other opioids, nerve-pain medications, and other pills for six more months. I was a drug addict, literally. My liver couldn’t handle the medication any longer, so I had to stop all of them suddenly. I experienced withdrawal with side effects, including hallucinations. I went to physiotherapy, including the Katharina Schroth Method. It was very painful, but I was glad to have a physiotherapist who wasn’t afraid to push me through the pain. I often cried and almost passed out, but she kept me conscious and desensitized, especially when stretching my posterior muscle chain. It took nine months to sit on the ground freely without support or falling backward. I’m grateful for her. Most people stop moving when they feel pain, fearing it will worsen. It only gets worse if you don’t move!

Life Transformation
One year after surgery in 2016, I went to the Katharina Schroth Rehab again for three weeks and made great progress. I grew another centimeter taller *whoop whoop*. I was still in pain but wanted to start working again. Because of my medical history, I couldn’t work long shifts, especially if it involved sitting. I went to the “Job Center” in Germany, where unemployed people look for jobs. My consultant had mild scoliosis. I thought he would understand me, but he tried to tie me behind a desk. I told him it wouldn’t work for me. I asked for help to become a physiotherapist, but they wouldn’t support it because “You can’t lift patients.” I asked my surgeons, therapists, and orthopedist for a letter of approval stating they didn’t have concerns about me managing all tasks as a physiotherapist. Still, that door stayed closed. I thought, okay, how about something similar, like becoming a personal trainer? It took me four years to get the approval from the Job Center. Honestly, I didn’t even know if I could do it. But, remember Nick Vujicic? Stop thinking, just do it! I had not many people who believed in me. But I did it anyway. I was still depressed. I had five different psychologists, and no one seemed to listen. They all tried to treat me the same way: “If you have a job, your self-esteem will grow, and all your problems will disappear.” By the way, I also had social anxiety, probably from the bullying. I could never trust people, even when they were nice to me. I wasn’t sure if it was a mask or real. I started dancing salsa (yes, you can dance with spinal fusion). It was the best therapy for me. It’s not only about dancing, but also about trust, letting go, and being in a position where your partner guides you, and you just follow. The bodies are very close to each other, otherwise, you can’t really dance. I bought a dress and felt pretty and feminine. The music is always so alive and happy, lifting my mood every time. The people are kind and decent. The perfect environment for someone like me, who’s afraid of talking to people. Let’s just dance. Here I am. All screwed up, literally, but happier than ever. Not every partner accepted me with all my scars, literally. One ex-boyfriend even said that my scar disgusts him. That’s how he became my ex-boyfriend. I met someone on a salsa cruise in 2017. The first night we spent together (no worries, nothing happened except…) I was in such severe pain that I couldn’t sleep. I got up twice, trying not to wake him. I went to the balcony crying. When I came back, he woke up and asked, “What’s wrong?” After I told him, he said, „Let’s talk about…“. We talked for several hours until it was almost daylight. You can imagine that I fell in love with this guy. He came from Dubai, visiting his family in Germany, met a „screwed-up“ person like me, and spent a night talking and comforting me. This is what we need! He always supported me and my visions and never doubted that I could do something. If I believe in myself, why wouldn’t he? Of course, I married this man. It took maybe another three years to become free of pain. I learned so much about anatomy and physiology, which helped me understand my body and how I can help myself. It’s definitely not a sprint. It’s a marathon, and you have to have the longer breath! When you were trying your first steps as a toddler and you fell 300 times, you didn’t think, „Well, this just isn’t for me!“. You continued until you walked. I did the same. I just continued to do my exercises, and one day I realized that the pain was gone. The one thing I want to give you on your journey is: never let anyone put you down or tell you that you can’t do something. Just because they don’t know better doesn’t mean they are right (doctors included; no offense, doctors).

Conclusion
Reflecting on my scoliosis journey, I realize how much I’ve endured and overcome. From the painful treatments and bullying in school to the transformative rehabilitation and life-changing surgery, each step has shaped who I am today. I’ve learned to trust in my strength and resilience, finding passions like salsa dancing and a supportive partner who believes in me. To anyone facing similar challenges, remember this: your journey is unique, and it’s okay to feel lost or overwhelmed. A spinal fusion doensn’t „heal“ your scoliosis. All the metal rods and screws don’t improve your pain. Strong muscles and movement do! Seek out supportive communities, be disciplined in your treatments, and never lose hope. Your story doesn’t end with scoliosis; it’s just a part of your journey toward a brighter, and hopefully pain-free future. Thank you for reading my story. If you’re dealing with scoliosis or know someone who is, share this article with them. Let’s spread awareness and support each other in this journey.