Three years ago, my parents noticed a lump on the right side of my spine that would rise up and kind of roll when I bent forward.
Papa made an appointment with our pediatrician. It all happened so fast. In March 2016, almost at the end of Grade 9, x-rays revealed that I had a thoracic curve from T5 to T11 measuring 65 degrees and a Thoracolumbar curve from T12 to L4 measuring 32 degrees. At the age of 14, I was diagnosed with adolescent idiopathic scoliosis, meaning that my spine was shaped like an “S”. It was the first time, I heard the word! I was told I would have to be fitted for and wear a back brace to try and prevent the curve advancing.
To be fitted for a brace you have to lie on a table and be wrapped in cold wet gauze. You have to lie still until the mixture dries. It is not an easy thing to do, nor is it very uncomfortable. A few weeks later, we picked up the brace. I was told to wear it 23 and a half hours a day. The half hour was intended for showering. The brace tightly around my stomach and closed in the back with leather buckles in an attempt to straighten my spine. It was so uncomfortable and embarrassing.
Unfortunately, the brace didn’t stop the curves from growing. I was x-rayed every six months. At each doctor’s visit, my scoliosis progressed. Within a year, my Thoracic curve had also progressed to 90 degrees, while the Thoracolumbar curve was up to 55 degrees.
My parents looked for means to help me on Facebook and came across the Scoliosis Philippines Support Group headed by Ms. Amanda Glenda Bonife-Kiamko. It promotes awareness and provides support to Scoliosis patients like me.
Last June 30, 2018 during the Scoliosis Awareness Month celebration at the Philippine Rehabilitation Institute, one of the specialists said my curve is not for bracing anymore. Surgery is recommended. I remember my parents crying and then I started to cry as well. It was very scary for me. You don’t often see your parents cry so I knew this was not going to be good.
Through the advice of Ms. Amanda, we applied as a beneficiary of The Duncan Tree Foundation, (headed by Ms. Ouida Duncan) a non-profit organization serving the medical needs of the poor and vulnerable in selected countries. After a month, Southern Philippines Medical Center (SPMC) e-mailed us, inviting to do Pre-surgical Assessment in Davao City. August 2018 we flew to Davao for my assessment.
The long wait is over, June 30, 2019 we received good news that I am one of the lucky applicants of The Duncan Tree Foundation and they are expecting us to fly again to Davao in preparation of my surgery. July 10, 2019, we arrived to Davao City for the second time.
My surgery was scheduled on July 22, 2019 and I was filled with fear and worry. I researched spinal fusion surgery and read other patients’ stories online. I was encouraged by their testimonials to think positively and to visualize myself as healthy and vibrant after surgery. I also read about the importance of being in great physical shape before surgery. I jogged around my neighborhood to build endurance, clear my mind and practice my positive affirmations to prepare for my scoliosis surgery.
With all the standard test procedures, I dreaded the MRI the most. I was scared to be put inside this big tube and I remember holding my mother’s hand as I was placed deeper inside. I remember tears rolling down my cheeks and the back of my head getting wet. They told me after the MRI how brave I was but I sure didn’t feel that way.
Before being taken into surgery I was hooked up to all these electrodes that would be used to make sure all my nerves remained intact during surgery. I looked like a science fiction character. It was at this point I broke down. I started what we call in my family the ugly cry. My parents were holding my hand and they started to cry too. They are both crying and both scared. My mom gave me some quick kisses and words of love.
After a nurse gave me some medication, I started feeling more and more relaxed and then my memory fades. I don’t remember anything after that. According to my parents, the surgery took a total of eight hours.
I woke up in the recovery room with puffy eyes but I felt relieved seeing my family around me. The very next day, I started with physical therapy (PT).
PT has you up and out twice a day walking the hall. I didn’t want to get up and move. I just wanted to lay in bed. You also need to start eating. I had no appetite and all my family wanted me to do was eat. My dad just kept saying eat, eat, eat I was getting sick of it and just didn’t want to eat.
Once I was ready to be sent home, my routine started to change. I would get up, get cleaned up, and get my back dressing changed. Taking the tape off my back to change the dressing hurt a lot. It took me a while to get an appetite. I knew I had to eat well because I had a lot of healing to do. I was sure to eat lots of protein and calcium. Even if I didn’t really feel like eating I was sure to get the right food groups needed to promote healing.
I also started PT after I got home. Most of my therapy consisted of helping my ability to move, improving my functional ability strengthening and flexibility. The work was hard, but my physical therapists were so nice. My parents kept telling me there would be a light at the end of the tunnel and as therapy went on, I found that to be true.
Spinal fusion surgery made me stronger both physically and mentally and it really boost my self-confidence. I set my mind towards several goals, including graduating Senior High School class and attending Lyceum of the Philippines, (Batangas) and taking up Engineering.
This is my story and I want to help any other scoliosis warriors out there. I understand the pain you go through but you have to realize just how strong you really are. Yes there are still days when I wish I could bend my back like others take for granted but I was chosen to be like this and I’m happy.
Lipa City, Batangas Chapter
How about you? What’s your scoliosis story?
Be strong !