Scoliosis: The Good, The Bad, and the Curvy

“Is that normal?” My friend innocently asked, as I bent down to tie my shoes. “What?” I responded. “Does everyone’s back do that when we bend?” She asked. I realized what happened – bending exposed the most obvious sign of my scoliosis: the hump. You can only see the hump if I’m bent over, or if I am laying down on my stomach.

 

 

Scoliosis Surgery Anniversary

This month marks 16 years since my scoliosis surgery. I inherited scoliosis, the curvature of the spine that looks like an S or a C instead of a straight line, from a few generations. My dad has scoliosis, his dad had it, and so on.

My curve progressed quickly, so the only option was for me to get surgery to correct the scoliosis.

How it started

My dad noticed a small hump in my back when I was 10 years old. For some reason, we didn’t really do the scoliosis checks at my elementary school. We only tested for lice.

The right side of my back had a curved, S shape. My dad and I went to an orthopedic doctor to get a professional opinion.

Scoliosis classifications are:

• Mild scoliosis: spine curvature < 25 degrees.
• Moderate scoliosis: spine curvature = 25 – 50 degrees
• Severe scoliosis: spine curvature > 50 degrees

My doctor immediately diagnosed my condition as severe scoliosis since the curve measured 62 degrees.

There are usually a few options to correct the spine curvature: wearing a brace to straighten the spine, regularly visiting a chiropractor, or the last resort: a spinal fusion. The doctor recommended surgery, and everything flew by pretty quickly after that.

Preparing for the spinal fusion

We went to a blood bank to take my blood and store it for later; I was going to lose a lot of blood during surgery, so they needed to collect blood to donate back to myself. There were some spoofs – blood banks that didn’t know what they were doing, they couldn’t find my veins, or they were trying in the wrong areas. That was painful. Once we found the right blood bank, it was smooth sailing.

Leading up to the surgery, we had to tell my fifth grade teacher I would need time off from school. My dad had to arrange his work so he could be there for me in the hospital during the surgery, and we needed a babysitter to watch me at home once I returned home from the hospital. My dad and I discussed writing journal entries about the process. It was a great idea, and I wish I kept up with it to look back on.

 

 

The morning of the surgery

The morning of the surgery, I sat waiting with my dad in the hospital. I played the game Snake on my dad’s Nokia phone because that was my favorite game at the time. Once it was time for me to go in, they put me under anesthesia, and that was it. I fell asleep so quickly, I just remember laughing at something and falling asleep.

13 hours later, I woke up in a dark room, alone, facing an open door. I was hooked up to machines, and I felt like I was going to throw up.

I called for my dad. No one was there. A nurse walked in, and I immediately told her I felt nauseated. She gave me ice cubes because I wasn’t cleared to eat solid foods immediately after surgery.

I was upset I couldn’t eat, but my dad walked in shortly after. I later learned I was in the ICU – intensive care unit. My whole body felt…HEAVY. It felt like a boulder was on my shoulder, and I couldn’t shake it off. I just laid there in the hospital bed. It was official: there were now two metal rods in my back, one on each side of my spine, to make sure my spine didn’t go anywhere.

That first night was horrible. I fell asleep on and off throughout the night, but my whole head and body felt achy. I heard someone going into labor nearby, and I later heard cries coming from a baby.

At 10 years old after experiencing scoliosis surgery, it was the last thing I wanted to hear at that moment. I laughed about it later, saying it sounded like the baby was having a baby. The poor baby was crying and moaning all night.

Learning to walk again

I stayed in the hospital for about 5 days. I was moved from the ICU into a brighter location with a window and brighter walls, a room shared with one other woman. Everyone at the hospital was so wonderful and accommodating.

I remember watching one of my favorite episodes of Lizzie McGuire on the hospital TV in my room – the Christmas episode with Aaron Carter. The hospital workers even brought in an old arcade game with Super Mario! I never got to play the game. I was too groggy and physically incapable of getting up. But the thought of it was so sweet.

I had a fresh scar down my back: 15 inches to be exact. That scar is still there today, but it’s not as prominent as it once was.

A few days later, a physical therapist re-taught me how to walk. Day 1 was the toughest. I immediately felt numb when I sat up. I was in pain, I was frustrated, and my back felt really heavy when I sat up in bed. It took a lot. I didn’t want to do it.

I know the therapist wasn’t happy with me, but looking back, I was 10 years old, almost 11, and it was a lot. We worked with a walker, and I started walking again little by little.

At one point, my dad put me in a wheelchair so we could visit a different floor with an arts and crafts area. I dipped my hands in paint and pressed them on a ceiling tile. The tile still hangs in the hospital.

 

 

Recovery at home

I stayed home for a month. My teacher brought my schoolwork to me, and I either stayed home with a babysitter, or my dad was with me. We used walkie talkies so I could communicate with them without getting up.

I felt so lazy being at home, but I had to recover. I listened to a lot of music and read a lot.

Going back to school was the next hurdle. The first place I walked in was my daycare. It was a before and after school program where I grew up in from kindergarten on. I remember walking through the place, feeling so…strange. Was this my body attached to me? I probably walked funny, not comfortable with being tall and lanky for my age. I grew an inch and a half after the surgery.

My friends said hi and asked me, “Are you doing okay?” Once I returned to school, my dad gave me a pillow to take with me. But I never used the pillow until weeks later. Why? I didn’t want it to seem like I needed special treatment. I was – scratch that, AM an introvert, and I didn’t want to draw attention to myself. Part of me felt embarrassed that I needed a pillow between my back and my chair. Now, I can’t live without one.

Bionic Woman

I never really experienced any serious concerns after the scoliosis surgery. My only limitation – I couldn’t participate in physical education classes or direct contact sports. I’m also not supposed to ride roller coasters, which is fine by me! Many people comment on my straight posture. They either compliment it, or comment on the uniqueness of it. I try to explain it in the best way that I can.

No one really knows about my scoliosis unless I say something about it. I’ve been called “Bionic Woman,” which is probably the coolest nickname related to it since I have two metal rods in my back. I’m just waiting for that superhero with scoliosis to be released in theaters soon…

My vertebrae are fused now into a single bone. This prevents the bone from moving.

I also received a small, ID-sized card with a photo of one of my X-Rays. I presented the card at airports when the metal in my back went off in metal detectors. My back was really sensitive for the first few years.

Treating Scoliosis with Exercise

I used to wake up with terrible back pain. Every single day. Throughout middle school, high school, and the beginning of college. But I started getting active in college, and that’s when I realized…I needed to move. Physical activity HELPED my condition. Just as long as I didn’t push it too hard.

I played intramural ultimate Frisbee (we made it to the finals!). I walked around lakes, jogged, lifted weights with a campus trainer, and walked to all my classes.

By junior year, I discovered the beauty of yoga stretches, and lengthening the spine. I was getting stronger and stronger.

Once college ended, nearly a year later, I started lifting weights seriously, keeping a workout notebook. Squats, deadlifts, chest press, and more. The gym was my new playground. I was squatting up to 140 lbs. at one point.

I gained 15 lbs. within the first 3 months of lifting weights, and I felt stronger than ever. It’s always been difficult for me to gain weight (a problem many people try to dismiss or claim isn’t adequate), and I attribute part of that to the scoliosis.

The back pain stings when I skip working out, so I try to stay consistent. I can’t sit or stand for too long. Hot showers, a heating pad, daily workouts, massages, and taking breaks from daily work to lie down really help ease the pain.

Pushing Through the Pain

In the future, I would like to start some sort of a scoliosis support community. I know there are a lot of causes out there and communities, so why form another one? Scoliosis only affects 2 to 3% of the population, but it is such a lonely condition. It’s most common in women. I’ve only met 5 women in 16 years who had scoliosis surgery, and I feel an instant connection with our discussions.

I also found a fantastic blog called The Curvy Spine, which discusses many phases of the before and after surgery. If I created a community, I would like to start a discussion – in person and online – to provide resources so people don’t feel so lonely. If you know of anyone interested or who might be able to help, let me know!

 

 

I visited my orthopedic doctor for the first time since surgery in 2016 to make sure everything looked OK. She said my back looked great! When I went in before surgery, my curvature measured at 62 degrees. After surgery, it measured at 30 degrees. Now, 16 years later, it was at 37 degrees.

Recent X-Rays showed that my back is doing great now. Even though the curvature progressed a tiny bit, it’s a huge improvement. I will always have moderate scoliosis, something that is absolutely manageable.

It’s an ongoing healing process both physically and mentally. If you made it this far in reading the post – thank you! It’s personal and might not be a topic for everyone, but everyone has a story. This is a small piece of my story that I wanted to share with you.