So this is a topic I rarely speak about publicly, but considering it's Scoliosis Awareness Month, and since I'll probably be MIA for the next few weeks,, I really wanted to share my story with my friends, family, and the world!
When I was in middle school, we had a routine scoliosis screening each year during our Physical Education period. In seventh grade, the school nurse noticed some unevenness in my back during my screening, and she suggested I go see my doctor to get it checked further. My doctor determined that I did have scoliosis and recommended I visit a specialist. It took me years to find an orthopedic specialist with whom I felt comfortable, but after countless doctor visits, I ended up meeting Dr. Cunningham at the Hospital For Special Surgery in Manhattan, who I've been seeing for six years now.
I want to clear up what scoliosis is, because before being diagnosed I knew next to nothing about this condition. Scoliosis is when a person's spine curves in the shape of an "S" in varying degrees of severity. The curve can take place in any part of your spine. This condition comes in many different forms, but the most common case is Idiopathic Scoliosis. In this case, doctors don't exactly know what causes the condition, but most think it's genetic or just totally random. Most cases of idiopathic scoliosis develop before a person starts to go through puberty alongside a typical growth spurt. You might even have idiopathic scoliosis, but if your degree is under 30, you probably don't even notice it or aren't affected by it! Other types of scoliosis include congenital, which is detected at birth, or neuromuscular, which is caused by a more serious condition like cerebral palsy or muscular dystrophy (these are pretty rare, so if you know a person with scoliosis, it's probably idiopathic).
This is an image I found on the internet that demonstrates a scoliosis curve. My curve is a little higher in my back, closer to the top of my thoracic spine. I'll post my own X-rays once I get digital copies, so stay tuned for that!
Each person's spine is unique, meaning every case of scoliosis is different. A lot of treatment options are dependent upon when the curvature of the spine is detected, how severe it is, and the age of the patient. When my scoliosis was detected, I was already too old to be a candidate for bracing, which is when a patient wears a brace to sort of train the spine to grow straighter (it's similar to braces for your teeth, but it's for your spine!). My doctors opted to instead watch my curve closely and monitor my back pain.
My X-rays! You can sort of see how my scoliosis has progressed from 2013 (left) to 2015 (middle) to 2016 (right).
When I was diagnosed, my curve was probably around 40 degrees and I had no pain, which is a low enough curvature that most doctors would not recommend any treatment. But as I continued to grow, so did my curve, and now it's hovering around 55 degrees. I am really lucky that my curve is in the upper and middle part of my back, meaning my spinal disfigurement doesn't impact any vital organs, but some people with scoliosis lose lung functionality or can even have heart problems. It wasn't until about two years ago that I began to notice slight back pain, which progressed over time as well. Now, I feel pain in my back pretty regularly. My close friends are very aware of this, as I am constantly complaining about my back pain, which makes me feel like a 70-year-old instead of a 22-year-old.
Living with scoliosis can be scary and lonely. I know very few people who suffer from this condition, so I often find it hard to vent about my symptoms because unless you've been through it, it's a pretty tough thing to empathize with. For me, the hardest thing about living with scoliosis is how it affects my appearance. As a person who is particularly in love with fashion, I used to enjoy getting dressed every day and putting together fun and funky outfits. But since my curve has progressed, I have noticed the unevenness in my appearance, the way it has shifted my rib cage forward on one side and my shoulder blade back on the other. There are certain things I just can't wear (like halter tops, tube tops, or anything with low backs) simply because it draws attention to my condition. It's a huge blow to your confidence when you feel uncomfortable in your own skin, and while I consider myself a pretty confident person, I can't help but notice my back on a daily basis. It bothers me like crazy! I'm constantly thinking about my posture, how I walk, and how I look in photos if I'm not standing on my "good side." Very few people have ever commented on or even noticed my unevenness. Often, when I am explaining my scoliosis to people, I will have to stand up and point out the area on my back where its most noticeable in order for them to see what I see. But to me, the scoliosis is glaring and uncomfortable. Another thing that's rough about scoliosis is how it has limited my ability to do activities I used to love. I quit dance in high school because I would come home from practice exhausted by my physical limitations. When I went to college, I was wiped out by the end of the day just from walking to class. I even had to stop giving college tours this year because the tour route was too demanding for me. Sometimes instead of going out with friends I would just sit at home because I was in unbearable pain, and it really frustrated me that I was missing out on having fun because of my scoliosis!
Me in the hospital snapchatting the pain away.
After years of dealing with this condition, my doctor and I finally decided to opt for scoliosis corrective surgery, AKA a ~~spinal fusion~~.
So, WTH is a spinal fusion? I know, it sounds terrifying. But it's not really. Essentially, my doctor is going to cut me open, add some titanium screws and bolts to my spine in order to straighten it out as much as possible, and seal me back up. This is obviously a very simplified explanation, but I am not a doctor so it's as good of an explanation as I can provide. The whole procedure takes about six hours, and the typical recovery timeline is sixteen weeks.
I'm having my long awaited surgery in a week - on June 18th - at the Hospital for Special Surgery. Going into this procedure, I have lots of fears. What if there's a complication or an infection? Am I going to be in awful pain during the recovery? How long will I have to be on painkillers? What is my scar going to look like? I like to pretend I'm not afraid or anxious, but surgery is scary no matter how big or small. What's keeping me positive is how amazing Dr. Cunningham and his team have been through all of this, how happy I am going to be with the result, and the fact that I get to wear Crocs for weeks while I'm recovering (crocs are back people, you heard it here first!)
As I was preparing for this surgery, I realized that there are very few resources for scoliosis patients - especially those within the 18-30 age range. A lot of doctors opt to do this procedure when patients are 15 - 18 years old, but my doctor is particularly conservative about surgery and didn't want to operate until it was absolutely necessary, which is why I'm older than the typical "pediatric" patient. But I'm thankful that we waited until now to do this operation because it's the first time in my life that I pretty much have nothing else going on, and I'm super lucky that P&G is allowing me to have a flexible start date so I can recover comfortably!
In a week I will begin a really difficult journey, but I know I am going to be so much happier once I am free of my pain and discomfort. I am excited to share as much of my story as I can through my site here. I am hoping that by sharing my story, I can help to destigmatize scoliosis, to explain it to people who have never heard of it, and help inform other young men and women who are preparing to have a spinal fusion operation.
So, if you're interested in following along as I recover, continue to check back here for updates, or follow me on Snapchat (@sloaneapples)! I would also VERY much appreciate reading and Netflix recommendations because I am going to be bored out of my mind and I will need some entertainment to take the edge off. Oh, and if you're in the NY/NJ area this summer, feel free to stop by my house and hang with me as I relax and recover!