Remembering My Spinal Fusion Surgery

When I was younger, I had a 90-degree curve in my spine due to scoliosis from spinal muscular atrophy (SMA). My torso hunched, and the curve was visible.

Deciding when spinal fusion surgery is needed

Doctors always told my parents and me that once my torso finished growing, I'd need a full spinal fusion. They wanted to correct the curvature and prevent my spine from collapsing onto my lungs. At that point, my lungs had already been squished, adapting to accommodate the scoliosis. I diligently wore a back brace every day, hoping to delay damage to my internal organs and perhaps even correct the curvature, although it was a long shot.

At around ten years old, they decided my torso had grown enough to proceed with the surgery.

Being very afraid

I recall feeling terrified at the thought of being cut open and operated on. I mean, at that age, the idea was utterly mortifying. The doctors attempted to ease my fears by assuring me that I wouldn't feel a thing, that I'd be asleep the entire time, and that I wouldn't even remember it. Despite their efforts, it didn't offer much solace to my younger self. They even showed me a photo album filled with pictures of the operating theater, but those images remain etched vividly in my memory. Those photos offered zero comfort and further fueled my anxiety.

At the time I remember my mom not even telling me when they’d called to schedule the surgery itself. I found the notation written on the calendar under JENN HERSHEY MEDICAL. Of course I was inquisitive and asked what it was for and was abruptly told I’d be going for surgery that July!

Prepping for surgery

July arrived, and it was time for my operation. My nerves soared to an all-time high. After completing all my pre-op tests, I officially received clearance for surgery. During this process, I discovered I had a minor mitral regurgitation. I was informed that I would eventually grow out of it and that it wasn't a significant concern.

I was so against getting my surgery the night before we had to go I tried to tie myself to my bed with a string. It was yarn and didn’t work. It’s comical now. But it was my only way to rebel. We had to be there at 3 a.m. That was horrendous in itself. After pre-op check in, I was taken to a waiting room and provided with a gown and “silly juice,” something to literally relax me and make me forget and it worked.

My spine was partially improved

I don’t remember much after changing into my gown and taking the medicine. Which I am thankful for now. I’m glad I don’t remember and have those images in my mind. My surgery was over 13 hours long. My surgeon was a tiny blonde woman whom I really loved and trusted. During my surgery, updates were provided to my parents at various intervals, and they later relayed them to me. Despite considerable effort, my spine remained very stiff, making it challenging to pull the curve back enough to straighten it. Consequently, even after completing the surgery, my spine still retained a 45-degree angle.

A mishap during surgery causes respiratory problems

Surgery was successful but once I was in the ICU things did go downhill slightly. I was on morphine and should have been resting peacefully and healing, but I was wide awake and feeling like I couldn’t breathe even with oxygen and a BiPap on. Rest was nonexistent. My parents kept telling the resident on my case that something wasn’t right, but unfortunately he didn’t think or see anything wrong and assumed I was just a child not wanting to comply with wearing the BiPap machine.

My parents insisted on summoning my surgeon to check on me. Upon her arrival, she also sensed that something was amiss and ordered tests to determine the cause of all my discomfort. It turned out that during my surgery, the scalpel had nicked my lung, causing a small hole. Wearing the BiPap machine, which was forcing me to breathe, enlarged the hole further.

I ended up requiring a chest tube to alleviate the pressure and pain on my lungs. The insertion of the chest tube was very traumatic, and I can still feel the sensation of the tube going in if I dwell on it too much.

One challenge resolved; another appears

After managing the punctured lung, I began to sleep and rest. However, eating presented a whole other challenge. I couldn’t keep anything down, whether liquid or solid, for a prolonged period. Despite my surgeon's advice that I could eat whatever I wanted as long as I tried, it took me a while to muster the appetite. For several days, I subsisted on crackers before attempting real food.

Getting back in my chair soon after surgery was difficult, but it was crucial to keep moving as soon as possible post-operation. Being upright in my chair helped me feel like I was gradually returning to normalcy.

Gradually returning to normalcy

I was in the hospital for almost a week. It was a really brutal experience simply due to the type of surgery I had to undergo. All the complications thereafter were an added bonus, but I’m really glad now that I’m older that I had it done.

Surgery was brutal and changed my body in a lot of ways. I lost sensation down my spine and across both shoulder blades. I couldn’t stand to have anyone touch my back for years after because of the tingling sensation I felt. I’m assuming that was from nerve damage from the incision. It took a long time for my body to return to a normal baseline after my operation. My strength cane back gradually. It took time for me to even feel comfortable with metal in my back. For the longest time, I could feel the rods anchored to my shoulder blades whenever I touched the top of my shoulders by my neck. However, that sensation comes and goes as my weight fluctuates.

Thankful for the fusion, for the most part

If I hadn’t had my spinal fusion I don’t know what would have happened to my spine and my lungs. It changed my life in a lot of ways. Some for the better. Some for the worse. I’m thankful to not have a 90 degree curve anymore. But I still deal with pain from my spine a lot even having gone through that ordeal.

Having a full spinal fusion is something a lot of people with SMA experience. I find comfort in knowing that I’m not alone in that. Going through surgery definitely made me stronger. It gave me the ability to realize that I can do hard things and come out the other side.