Disability, lifestyle, and nerdy thoughts.

My Experience with Spinal Fusion Surgery!

My experience with Spinal Fusion Surgery

When I was 9 years old, I almost watched my brother die.

He had a big scary surgery, one that I didn’t really understand at the time, called Spinal Fusion. There were multiple complications and infections. He had nerve damage in his legs because the doctors scrubbed them so hard they broke them. The pain was so bad he couldn’t bear to have the bed sheets brush against his knees. I remember visiting him in the hospital one time and hiding in the bathroom. They had to move him and I knew he’d cry and scream.

He was in the hospital for a month, while I was passed around between family members and friends so my mom could stay with him. Once we took him home, he was bedridden for what felt like forever. There was a time when I really didn’t know if he’d ever be able to leave the house again. I didn’t ever say that in front of him. Instead, I’d go into his room and fart. As I was leaving, I’d smirk and tell him it was something to remember me by. I know, he’s really lucky to have me as a sister.

Clearly, it wasn’t a great experience for him. I mean, everything that could go wrong, short of literally dying, did go wrong. You can only imagine my excitement when I was thirteen and the doctors told me it was my turn!

One of the lovely symptoms of my brother and I’s disease, Muscular Dystrophy, is spinal curvature.

Karly and her brother Kevin

Our Scoliosis was severe and there wasn’t really anything we could do to stop it from progressing, which is why we decided to go through with the surgeries.

My spine curves inward towards the bottom, and by the time I had my surgery I was essentially bent in half. Without the surgery, the curve would have continued to worsen and I would have had all kinds of complications. I guess bodies don’t like it when you twist and smash their insides. Still, when it was my turn to have the surgery I wasn’t having any part of it. I remember yelling that I didn’t care if it killed me, I wasn’t going to go get ‘hacked up.’ Thirteen year old me wasn’t nearly as badass as she thought she was, she was just terrified.

Which is fair, if we’re being honest. Spinal Fusion is an extremely complicated surgery, and there was a very real chance that something could have gone wrong for me, too. Your spine is pretty important, after all. One bad slip up, and you could definitely die on the table. I don’t really remember doctors explaining any of the risks to me, but I probably just ignored them like a brat. After the disaster that was my brother’s surgery, I had zero trust for any of the doctors.

They started with an incision from my neck all the way down to the tailbone.

The procedure took around 9 hours. They straightened out my spine as much as they could and fused it to metal rods to keep it from curving again. Not exactly a party, but it was that or let my spine keep curving until it killed me.

We had to go in around 6 in the morning, which I vividly remember being furious about. They got me ready with IV’s, which they struggled to get in as usual, and started anesthesia while I listened to my music. I don’t remember them taking me into the operating room, but I’ve been told my mom had a meltdown as soon as they took me.

When I woke up, I remember coughing as they pulled the tube out of my throat. I was in the recovery room, there was another kid screaming and I just wanted my mom. They brought her in, but just for a few minutes until they sent her back to the waiting room while they transferred me to my room.

I ended up waiting for what felt like years alone in my room. Well, not alone. There was another little girl sharing my room. I don’t remember much about her and I never actually saw her. The nurse who was meant to bring my mom to the new room finished her shift and never told anyone to go get her, so I was left waiting for hours while my mom was panicking because she didn’t know where I was.

Other than that, I don’t remember much from the day. I was a little sore, but I mostly just slept.

This is where the story gets weird.

The rest of the week I was in some sort of haze. I didn’t speak, I didn’t listen to music (a huge red flag for everyone who knew me), I didn’t watch tv or anything else. All I wanted to do was quietly lay there. No one really knows what happened or where I went, but I was completely checked out. I turned down pain meds because I genuinely didn’t feel anything, except some killer period cramps.

At one point, my aide from school came to visit me and learned that I wasn’t on any pain medicine. She freaked out and immediately went to yell at the nurses, who of course came rushing in to check on me, but I didn’t want or need anything. This is definitely not the norm.

After spinal fusion, it’s important to get out of bed and keep moving.

The nurses would come in a few times a day and pick me up so I could sit in the chair next to my bed. One of those times, they forgot to put the side rail down and slammed my freshly operated on back right into it. I didn’t even blink, but my mom who was watching from the other side of the room nearly passed out.

I went days without food because I was never told I was cleared to eat, and then once they finally did tell us, we had no idea how to get food because they didn’t bother to explain that we had to call and order. We were used to my Pennsylvania hospital where they’d bring us a menu when it was time to eat. I also remember that the zoo brought in animals for kids to see and the girl I shared my room with got to go. They told me I wasn’t allowed. I’ve harbored a grudge over that for a decade if I’m being honest.

Other than that, I don’t really remember anything else. My family all say I went to another planet, but I’m okay with it because I somehow skipped out on a lot of pain without even trying. My mom was worried I wouldn’t go back to my old self.

After a week, I was able to leave the hospital.

I had to spend a lot of time in bed because I could only manage small breaks in my chair. I didn’t zone out as much as I did in the hospital, so I started to be pretty sore whenever I’d move. Recovery was slow, but as time went on I could sit up for longer and longer periods of time.

Once I was able to spend a decent amount of time in my chair, all I wanted was to sit up and move around again. I’ve never been one to sit still. I’ve always wiggled, bopped, or moved in my chair as much as I could. I’m a fidgety person, and it’s always been important to me to keep as much mobility as possible. Suddenly, I couldn’t move from the waist up and I hated it. I had to sit with my back against the chair and my head on the headrest. I felt like I was tied down even though I wasn’t. My torso felt 100 pounds heavier.

Not being able to move was one of my biggest fears and a huge reason why I didn’t want the surgery, so I was determined.

My mom was always nervous that I’d hurt myself and would tell me to just be still and careful. Naturally, I didn’t listen. I’d go in my room and just work at pulling myself up. I quickly discovered that I wasn’t strong enough to do that, so I came up with a new plan – driving really fast and then coming to a sudden full stop, throwing my body forward. Because yeah, that was safe and smart.

It worked, though. Once I was up, I could keep my balance for a few seconds. When I fell back, I’d rest a few minutes and then try again. I kept doing this until I wasn’t wobbly anymore. Eventually sitting up and moving was the norm again, and I was pretty proud of myself. I even regained the strength pull myself up without nearly throwing myself onto the floor. A solid win for everybody!

I couldn’t return to school, so I was enrolled in a home school program.

The plan was that I’d continue my classes over the phone until I was well enough to handle a full day out of the house. Except when the time came, I guilt tripped everyone into letting me just finish out the school year from home instead of going back. Like most thirteen-year-olds, I was angsty, hated my middle school, and was more than happy to never go back. I still consider it one of the best decisions I ever made. I just have no idea how I got away with it.

More than 10 years later my back rarely bothers me. I still have a 30 degree curve in my spine, so it does get a little achy. Sometimes it feels a little strange that it can’t bend or that I can’t crack it or stretch. Other than that I don’t really notice it anymore!

I know how lucky I am. Somehow I came out of a surgery that’s pretty miserable for everyone that has it with good health, no complications, and minimal pain. I guess it’s a good thing no one listened to my protests as a kid because I’ve got an impressive scar and my spine is doing its job. I can’t ask for much more than that!



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