Childhood scoliosis surgery stories: living with a curve

Childhood scoliosis surgery stories: living with a curve

January 12th, 2017, at 11:45 A.M

I had a physical exam for fourth grade. The doctor said, “Touch your toes,” and began to run a hand down my spine. “It looks like you have a case of scoliosis.”

I was ten years old. I thought I’m going to die.

The doctor was talking to my mom. I didn’t know what to think. What did that word even mean? Is it cancer? I thought. I even started planning my funeral. I imagined my parents crying. Again, I was just a little girl. I didn’t know what to think.

My first x-ray f0r scoliosis

The nurse took me to this dark room. There were no lights. All I could see was this bed, and it sounded like a big motor. The nurse reminded me of my grandma.

“This is called an x-ray. I promise it’s not going to hurt you,” the nurse told me.”Everything will be okay. I’m just going to take a little picture of your back.”

With a scared and quiet voice, I said, “Okay.”

I hadn’t remembered ever having an x-ray before. I closed my eyes as I put my back to the board.

Childhood scoliosis diagnosis

A few minutes later, we got the pictures back. The nurse gave me two numbers: twenty-six and thirty-three. These were the degrees of my curves. The doctors explained to me that scoliosis is not cancer or anything like that. They said that scoliosis is simply a spine that has curves to it, instead of being straight. Scoh-lee-oh-sis. I tried to pronounce it, but couldn’t.

They told me I had to go to an orthopedic doctor. I was unsure of what that was. Is it a surgeon? Am I going to die? Why do I need surgery? The nurse quickly reassured me that it was not a surgeon. It was simply just a regular doctor who would take a closer look at my back.

First orthopedic scoliosis appointment

The day had come. I sat on a small, brown seat in the waiting room. I was biting my nails and swinging my legs back and forth. It was so quiet you could hear a pin drop.

All I could hear was “tik-tok.. tik-tok.. tik-tok.” What are they going to say?

The nurse called my name. I grabbed my mother’s arm. I don’t want to go back there!

We sat in the exam room, waiting for the doctor to arrive. The doctor finally came into the room.

He said, “You definitely need a brace for your scoliosis.”

Looking back now, I realize how silly this is, but at the time, I was smiling because I thought a brace would make me cool. I wanted to show it to all my friends at school.

“You have a choice,” he said. “You can either wear it at night time or day time.”

I chose nighttime.

That same day that I was fitted for my brace. They brought in a big, dark blue binder, and a cart full of different casting materials to measure the dimensions for my brace. I was ticklish, so it felt funny when they were wrapping the bands all around me. I wanted to laugh.

“All done,” said the nurse.

The next step was to choose a pattern and stickers.

“There are so many options… But I think I’m going with Zebra print.” I said.

“Great,” said the nurse. “Now you have to choose three stickers.”

I listed them one by one. “Hello, Kitty! Flowers! And… Butterflies!”

“Okay, sweetie. So you will come back in one week and pick up your brace.”

“I can’t wait.” But I was just a little girl. I didn’t know what to expect. Scoliosis was still a word I was trying to learn.

The first night wearing a scoliosis brace

One week later, I received my brace. I was so excited. All of the pretty pictures and prints I had chosen looked so pretty in person. That evening after dinner, I ran up the stairs, and my mother began to help me put on my beautiful new back brace. We first put on the sock, which was this long and tight tank top type thing. We then began to fold each side of the velcro over each other. I was so excited to finally have my brace. However, thirty minutes in… I began to feel some pain and discomfort. I couldn’t breathe. I couldn’t sleep how I wanted to. I began to cry. The brace felt different at home than it had at the office.

I asked my mom, “Can I take it off?”

“You have to keep it on.”

I begged and pleaded to take it off. And every night, it just got worse. I didn’t like it anymore. I realized that living with scoliosis wouldn’t be as easy as I had thought.

Sleeping with a monster

In the following weeks and months, I began to sneak and take the brace off. It hurt me so much, and I was not getting sleep because I couldn’t lay how I wanted to. The sound of the velcro was very loud; I would have to stuff blankets and pillows over it and around it to minimize the sound.

I described it as sleeping with another person: a person who is constantly talking to me or hurting me and won’t let me sleep. It was like a monster. It began to take power over me. It would hold me down and would not allow me to do the things I wanted.

It felt like lying on a rock. All I want is a night of rest without pain. All I want is to be able to breathe. It got so bad that I would memorize my parents’ alarm clock. I would set mine five minutes before theirs so that I could get up and slip the brace back on before my parents woke up.

It also began to embarrass me. I didn’t want to wear it at sleepovers. I began to hate going to sleep because it meant putting on the brace. I dreaded the nighttime.

October 18th of 2019

And then it happened. I fell. I was twelve at this point. I fell down the stairs onto my hip. We went to Urgent Care, and the doctors made me get another x-ray. I was used to that by now. They took me back to the darkroom. I did Everything they said, and the pictures were taken. The nurse left the room for a few seconds. My back was still up against the board. And then the pictures slowly started scanning. My heart sank watching the pictures load. At first, my upper spine looked straight, but it became curvier and curvier as the picture loaded. I knew that was it. I didn’t say anything. I just sat and imagined my life over the next few years. I thought it was my fault. I recalled my mind going blank for a few minutes. All I could remember is leaving the urgent care in tears, not knowing how the rest of my life would play out.

The new doctor

A few days later, I had to go to a new doctor. I didn’t want to go. Why am I even going to this appointment? I already know what he’s going to say. You need childhood scoliosis surgery. I walked into the new doctor’s office. The smells were all still the same. Toilet cleaner and latex gloves. It was cold. I had to get a new x-ray. I hated having them taken because it was a constant reminder of my scoliosis.

I walked to room six, and then the doctor said it: “You definitely need scoliosis surgery.”

I didn’t say anything. I didn’t want to accept it. I sat staring at the popsicle sticks and cotton swabs.

My mother began to cry. “Is there not another option?”

“Miss, I understand your concern about surgery. But unfortunately, there is nothing else to do.”

The second opinion on childhood scoliosis surgery

One month later, we found yet another new doctor for a second opinion. At this point, I had come to accept that I would need the surgery. It scared me to think about it.

The doctor finally came in. He said, “Looking at your x-rays…” and before he could finish, I stopped him and said, “I know. I need surgery.”

And the doctor nodded. I hung my head and started to cry.

As months carried on, I became anxious. What if I don’t wake up from surgery? What if something happens? What if I wake up during surgery? What if I can’t walk after surgery? Every day, with more what if’s.

Childhood scoliosis surgery pre-op appointment

On February 28th, 2020, I had to go for a pre-op appointment for my childhood scoliosis surgery. I was okay with going until I found out that they were doing blood work. This scared me because I’d never had blood drawn. I was really scared of needles. Will it hurt? How long is the needle?

We checked in and went to the exam room. They first went over some details for the surgery.

“You can’t eat past ten o’clock.” “On the day of surgery, you will have to wash in this special soap to make sure you do not get any infections.”

And then it was time for me to face my fears. The nurse walked into the room with a cart with different vials to hold the blood.

The nurse tied a tight blue band around my arm, and she pulled out the needle.

“On a count of three, blow a bubble and don’t pop it until the needle is in. One…Two…Three..”.

I held the bubble in my mouth and didn’t feel any pain. I was relieved. It was all over! That’s it? It’s over?

The nurse wrapped a bright orange bracelet around my right wrist. “You have to keep this on until surgery day.” The bracelet contained my name, a date, a bar code, and a number.

“You’ll do great!” she said. I wanted to believe her, anyway.

March 13th, 2020

Everything was still dark. The second floor felt haunted almost. All the lights seemed to be off, and it was very quiet. It seemed like no one else was around. The air was freezing cold, and it smelled like old wood. The lady at the front desk scanned the bright orange bracelet that the pre-op nurse had given me. I remember shaking because I was so scared. Putting on the hospital gown, the silver blanket, and the hospital hat, I knew that was it: they were going to cut me open. The nurse was old, tall, and overweight, and he wore glasses, but the only thing I really remember about him was that he wasn’t nice.

The nurse asked my mom, “Does she have any other medical conditions?”

My mom said, “No.”

He took my temperature and blood pressure. Once I was ready to go, a lady wearing an old, white nurses’ cap came in, holding a spoonful of bright red, cherry-flavored liquid for my nerves.

I wanted to throw it up. It tasted thick and like cough syrup. “I’m going to throw up,” I said.

“No, you’re not.” The lady shoved alcohol pads up my nose. “You’re not allowed to throw up.”

In preparation for my childhood scoliosis surgery the doctors, nurses, and anesthesiologists wrote on my spine with a sharpie. They came in one by one, used hand-sanitizer, and introduced themselves. The surgeon. The anesthesiologist. The PAs. The nurses. They wheeled me into the hallway, and my family said goodbye. The childcare nurse stayed by my side. They wheeled me into the OR, which was cold and quiet. I recalled the sound of packages opening. Those are my rods. Then paper ripping. The screws. They transferred me from the bed to the operating table. The bright light was blinding. And then it was time! They pulled over a mask filled with air and put it over my nose.

“What’s your favorite color?” said a nurse.

“Purple.” I’m feeling sleepy.

“How old are you?”

I yawned. “Thirteen. But I can’t answer your questions in a few minutes because I’m gonna be asleep.”

The nurse started to laugh. “I know, sweetie.”

My eyelids grew heavy. The sounds slowly started to become more and more muffled. And then my eyes closed.

Post-op recovery from childhood scoliosis surgery

Seven hours later, I began to wake up from my scoliosis surgery. To me, it only felt like a few seconds. I awoke to the sound of a heart monitor beeping and my parents speaking with the nurse. When I opened my eyes, the first thing I saw was my family sitting on a small blue bench at the end of my hospital bed.

I don’t remember a lot about the first night because I was still on medications. But I remember having a lot of pain. I felt very nauseous. And I dreaded every two hours because my nurses would have to come and wake me up to turn me onto my other side. This was to ensure that my body wouldn’t lose mobility. And every hour, they would come and get my vitals. So, needless to say, I didn’t get much sleep that first night.

I became really cranky because of the pain, and some of the medications that I was on. I didn’t like having to be in bed all night long. The following morning, they offered me breakfast, but I said no because I didn’t have much of an appetite. I really only wanted a Gatorade and a popsicle. But only red! Because that was my favorite.

When I woke up from my nap, the doctor said, “You’re going to have to stand up and walk now.” I was petrified because I was in so much pain. What if I fall? What if it hurts?

The nurses took my legs and began to turn me towards the side of the bed. This made me very dizzy because I was not used to moving with a straight spine. But as I sat up alongside the bed, I thought maybe I can do this.

By the time I was aware of my surroundings, the nurses each grabbed me by my arms, and I slowly began to stand up.

There was a small mirror to the left of my bed. They took me past the mirror and into the hallway, but not before I stopped to look in the mirror. It was me, but it wasn’t. I looked much taller. Older, somehow. I knew that I could do anything I put my mind to. Once I was in the hallway, I didn’t want to stop walking. So I walked a whole extra lap, which at that time was a huge accomplishment.

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Eventually, lunchtime came. The walk had taken a lot of my energy, but they wanted me to try and eat something. I didn’t think that I could do it because I was so nauseous. But I knew I had to, so I ordered macaroni and cheese.

When the food arrived, I stared at the fork. It looked like a mountain that was too high to climb. But I thought back to when I took that first step out of my bed. It was hard, but it reminded me that I could do anything. So I picked up my fork and took a few bites.

I wanted to sleep after that. So I shut my eyes and tried to get some rest. But those awful noises wouldn’t allow me to sleep. The beep-beep of the heart monitor, the honk-honk of the bed Alarm, and the tik tok of the clock.

My nurses came in to look at my incision. However, as they sat me up, they didn’t tell me they would take out the tube in my back. The one that was supposed to drain the blood. Removing it felt awful, like a sharp sting. The tube itself was like a wet noodle. The blood running down my back was so cold.

Within a few hours, they came in again to take my catheter out. This got me really upset because I knew that meant having to get out of bed every time I had to go to the bathroom. Once that stupid catheter was removed, they got me up one last time that day and let me walk a few laps. It felt good to get up and move a little. But getting in and out of bed was a real struggle for me the first few days. It hurt so bad. Something’s wrong with me, I thought. It was dinner time at that point. Only this time, it was a lot less difficult for me to eat. I had more of an appetite. Taking the first bite wasn’t as hard anymore.

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The third day after my scoliosis surgery was a bit rough. I did not have much energy. And I became depressed. My room was very dark, and I was in pain from the incision. I couldn’t go home until I was able to use the bathroom. But it hurt me getting up and down constantly. So I would sometimes want to hold it in because I knew it meant getting out of bed. The doctors gave me a ton of medications to try and help me, but nothing would work. Why isn’t this working? I want to go home! I began to cry. The nurses saw how much it was upsetting me, so they allowed me a break. I felt so relieved.

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I started off the day by being able to eat a whole meal. I felt so energized. I was ready to start the day. I was determined to go home. So I got up and walked. But I kept going after each lap. I walked sixteen laps. Then it was time to try and use the restroom. I sat and tried. But nothing happened. My nurses said that I could get back in bed. But I said no. I was determined. I took a deep breath and said I want to walk and try again. I walked five laps and came back and sat down. And it happened. I finally used the restroom. So they allowed me to take out my IVs! It felt so good getting those out of me. I could walk without a big pole. All I needed was a bandaid.

On the fifth day, I awoke to great news. All of my hard work and perseverance had paid off. I was going to be discharged.

I ate my breakfast and got dressed–in my own clothes! I didn’t need that awful hospital gown anymore. I went for one last walk, and my nurse came in. She went over all of the home care instructions. We packed up all of my things, and a man arrived at my door with a wheelchair. That was it. I am free.

He wheeled me down the hall and out to the parking garage where my grandmother’s car was waiting for me. As I went down the hall, I immediately thought back to five days earlier. That scared girl. The girl who walked down those halls thinking she was not going to make it. Now my spine was straight, and I felt happy. I felt proud.