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When I realized that June is National Scoliosis Awareness month, I was a little ashamed. This is something that I have dealt with the majority of my life and I didn’t know that there was a month associated with education about it. I’m so glad that there is! I am going to dedicate some blog posts this month to this condition. I’m also thankful for all the resources that are now available about Scoliosis. If only I’d had information like this available to me when I was diagnosed, maybe things would have been better.
My Scoliosis Experience
Scoliosis has impacted my life in a way that is probably difficult to understand if you haven’t experienced it yourself. Don’t feel sorry for me, I’m fine now, but it took a while to get to this point. Honestly, Scoliosis will always be a part of who I am and I’ve had to learn to deal with it, but it is never far from my mind. I’m going to share somethings that are hard to share but it will probably be therapeutic for me.
My scoliosis was found by my pediatrician at a regular check-up. I remember sitting on the table and he asked me to lean forward as he ran his hand down my spine. He then asked me to stand on the floor and touch my toes. When I was bent over he could see that one side of my back was higher than the other. After that I was referred to an orthopedic doctor. At that time there was no one in my area that dealt with Scoliosis so my family had to travel to a specialist in Knoxville, TN. This was almost two hours from my home. Lots of x-rays were done and I was eventually fitted for a brace. I had to go back for x-rays every 3 months. Over time it got stretched out to every 6 months, then 9 months, then every year and eventually they stopped. I guess I was lucky that the brace fit from below my chest to my hips. My brace was similar to the one below. Looking at this picture, even now, makes me cringe. I wore it for a few years but when they decided I had stopped growing I got to stop wearing it.
When I started wearing my brace I was in middle school. What a horrible time to have to deal with something like this, what with all the insecurities that come with that age anyway. I suppose I was fortunate that my brace was able to be concealed under clothing. My curve is in the lower, lumbar, area. So for a while all my clothes were baggy to hide this monstrosity. At times I FELT like a monster. I remember one time in eighth grade, there was a boy that I had a crush on. I thought he liked me, too. One day he was talking to me and he happened to put his hand on my back. He got a funny look on his face and asked, “What’s that?” I was mortified. I had to explain it and I’m pretty sure I ran to the bathroom crying. He never really talked to me after that. To this day, I think of it EVERY time I see him. I mean, I don’t hold it against him now, we were just kids, but I still never forgot it.
But ignorance isn’t just for the young. Just a few years ago a “friend” made a big production of my “deformity” in front of her husband. She went on and on about how bad it was. Oh, did I mention that she is a former friend?
Another time when I was in high school I remember it was the end of the day, and I was rushing to get to the car. I rounded the corner and started up the stairs where I hit my hip (which was covered by the brace) against the bottom of the handrail. The impact alone hurt bad enough, but it was compounded because of having to keep the brace on and it was constantly rubbing against the very large bruise.
Speaking of having to leave the brace on, I was only allowed to be out of the brace for an hour each day. My mother was a real stickler for this, too. So I was basically living in the stupid thing except for one hour when I had to do my exercises and take a bath! There were pieces of fabric that I had to wear under the brace that were basically like long tube tops. They were supposed to cut down on irritation. If that was the case I’d hate to know what it felt like without them! I still have scars on my sides from the recurring blisters that the brace caused.
What seems strange to me is that after all those trips to Knoxville for follow up appointments and x-rays, it wasn’t until I went to an orthopedic doctor as an adult that I learned the origin of my curve. Apparently my bottom vertebra in my spine did not form correctly before I was born. It was in a triangular shape like in the drawing below on the left where the line is pointing. This set everything off. And this particular doctor, which I never saw again, had the nerve to say, “You should go ahead and have the surgery if for no other reason you’ll look good in a bikini”. Can you imagine? Suggesting I get major surgery to look good in a swimsuit! I knew that what was in my best interest didn’t concern him so I never went back.
Strangely enough, for me, my back hurt less when I was pregnant than when I wasn’t. I guess it had to do with how the weight was shifted. It bothers me a lot now but I realize it could always be worse. I’m very active and I like to walk and even run in the occasional 5K. Yoga is a big help for me, too.
If you have kids, especially pre-teens, be sure to keep an eye on their backs. I was extra concerned and questioned my doctor during ultrasound appointments when I was pregnant. Me: “Does her spine look straight”, “Is his back forming okay”? He probably thought I was a nut.
Anyway, now I’m in my forties and I have back pain but it is manageable most of the time. Sometimes after working around the house and doing things that I have no business doing it gets me down and I hang out in the bed for couple of days, but not too often. I have to constantly be aware of how I’m sitting and standing. Left unchecked I tend to lean to the left so I try to be hyper aware of that. Honestly, it’s exhausting, but that’s just how it is.
The following information comes from the web pages of the Scoliosis Research Society and The National Scoliosis Foundation.
What is Scoliosis?
According to the Scoliosis Research Society: Scoliosis is a condition of side-to-side spinal curves. On an x-ray, the spine of a person with scoliosis looks more like an “S” or a “C” than a straight line. These curves can make the person’s shoulders, hips or waist appear uneven. In scoliosis, the spine’s vertebrae may also be rotated, causing one shoulder blade or trunk muscles to be more prominent than the other.
What causes Scoliosis?
In more than 80 percent of the cases, a specific cause is not found and such cases are termed “idiopathic,” meaning “of undetermined cause.” Conditions known to cause spinal deformity are congenital spinal column abnormalities (abnormally formed vertebrae present at birth), neurological disorders, muscular diseases, genetic conditions (e.g., Marfan’s syndrome, Down syndrome) and a multitude of other causes such as infections or fractures involving the spine.
What does not cause Scoliosis?
There are many common misconceptions and incorrect assumptions. To set the record straight, scoliosis does not come from carrying a heavy book bag or other heavy things, athletic involvement, poor sleeping or standing postures, lack of calcium, or minor leg length difference.
Who gets Scoliosis?
In childhood, idiopathic scoliosis occurs in both girls and boys. However, as children enter adolescence, scoliosis in girls is five to eight times more likely to increase in size and require treatment. Progression is most common during the growing years. Severe curves may, however, progress during adulthood.
Early detection is key
According to The National Scoliosis Foundation: ‘Scoliosis, when left untreated, can get worse and may cause chronic back pain, impact heart and lung function and take a toll on self-esteem. Screening for the condition is non-invasive and takes about 30 seconds. With early detection and proper treatment, people diagnosed with scoliosis can lead healthy, active lives.’
In closing, if you have this condition you can still live a normal life. Exercise, get rest, find emotional support when you need it and know that it will make you stronger. My family has been a great support system. They claim they don’t even notice it. I don’t believe it, but it is nice for them to say it. Stay safe everyone!