Power in Knowledge

With any condition or illness, knowledge is power. Scoliosis is no exception from this rule.
To all patients and parent's of children who suffer from Scoliosis, the hardest part is often understanding it. I hope that my anecdotes and information can help everyone learn more, so that you can take action instead of letting the condition take over your body.

The keystone piece is first knowing that Scoliosis is primarily a neuro-muscular issue. It can be induced by trauma to the spinal column, hereditary or idiopathic, as is the case with mine. Idiopathic typically means that it developed some years after birth, often during puberty, without any apparent cause. Since many cases of idiopathic Scoliosis occur during puberty, it is believed that hormones may have an impact on the development. It is crucial to understand that just because you or your child might develop it during puberty, that does not mean it will stop when growing stops. Even as an adult, it can worsen--though often at a slower rate.

Once you know that the issue lies in the muscles and/or nerves, you can treat it with methods more akin to exercise rather than brute force by hard-form braces or surgery (if these treatments do not appeal to you or your child). Exercise-based methods will definitely appeal more to athletic or active patients.


There are two popular methods of approach within exercise-based practices.

Schroth: http://www.schrothmethod.com/about-schroth-method

This method heavily emphasizes body awareness, breathing and posture. The methods include posture and breathing exercises to work with and ideally improve lung capacity and comfort.

CLEAR/Spinecor:
http://www.spinecor.com/ForPatients/WhatisSpineCor.aspx
https://www.clear-institute.org/treating-scoliosis/alternative-treatments/clear-scoliosis-treatment/

These two methods, CLEAR being an exercise regimen and Spinecor being a dynamic bracing system, are often used in conjunction with one another. The focus of both is being body-aware as you move and exercise to move to strengthen weaknesses created by Scoliosis.

Lesson #2: Healing Can Hurt

After getting rid of my Boston brace, my mother found a doctor in NYC who practiced the new, innovative method of Scoliosis prevention and healing: the CLEAR exercise regimen and flexible bracing system SpineCor. 

This brace is excellent for patients recently diagnosed and are active. As a young teenage girl, I liked to play outside a lot. This was the best option for me. 

The exercise regimen targeted my weaknesses due to Scoliosis, and helped manage my pain. 

However, I didn't realize this for several months. When I was first fitted with the brace and the doctor left the room, I cried. I had finally realized that my condition wasn't a quick, lasting fix. I had this brace too, since it squeezed and pulled at me. I was vain and hated that it made parts of my stomach bulge. 

My mother told me that often what helps us get better or heal is what hurts the most. 

Seen above are examples of what in-office therapy was like for me when I visited. Though the pictures look painful or grotesque, they provided a great deal of relief and comfort. The exercises helped me become more aware of my body and activity habits. 

Next post will be more in depth on my experience with this brace and therapy. If you have questions, feel free to contact me. 

Lesson #1: Test Before the Lesson

My Scoliosis was first detected in late Fall 2008 by my chiropractor at the time and my mother started researching reputable doctors in our area. In Feb 2009, we had gone to a doctor from Yale who told me I had to get a growth plate in my leg removed so that my left leg could "catch up" to my right leg after a. X-ray of my hips and legs. My single curvature in my lumbar-thoracic area had gone from 20 degrees to 35 from November 2008 to Jan 2009 and pushed my left hip down, effectively crushing the arch of my foot. Thus, the appearance of a longer leg. We decided he was a total quack, and went to another, who prescribed me the horrific Boston brace. I nicknamed it "The Plastic Corset", which is what it is, effectively.

In my journal entry, I bemoaned my fate as a 13-yo girl who had already faced Osgood-Schlatters and hypothyroidism. I questioned God's plan for me and my family, since my father had lost his job the previous year, and a month after the fact my little brother developed Type 1 Diabetes. I felt cheated, hated and forgotten.
For a month, I suffered this brace for 23 hours a day. I had extensive raw, bleeding skin around my armpits, hips and ribs from the chaffing. After a visit to my kinesiologist, she told me to get rid of it. For a couple months, my abdominal muscles were near useless and hurt to contract. However, with research we found a different approach to Scoliosis prevention and treatment, which I'll discuss next post.
So, the lesson:
Looking back, I find that often our greatest tests in life come before the lesson. Rarely do we feel prepared or able to overcome it. This is just the beginning of one of the greatest trials I will have faced to this day. I can remember so many times that I closed myself into my room at night and buried my face in my pillow so no one would hear me cry. I remember going outside in the middle off the night so I could watch the stars or a distant lightning storm while I let all of my anger, pain and anguish trickle down my face. My natural reaction was self-imposed seclusion and isolation. I didn't want other people, even my family, to touch me. I spent nearly all of my free time locked in my room.
I didn't feel prepared to suffer this way. In coming months and years, I came to realize just how much even the most introverted person needs love, physical affection and friendly human interaction.

It took me a long time to realize that it's okay to be unprepared. It's okay to be in pain and let others see when you're vulnerable. It's okay to cry in your mother's arms when your life isn't going the way you anticipated. 

My favorite quote is a Jewish proverb that says, "God is closest to those with a broken heart." This was my life's motto at the time. Never have I prayed so much, fasted with as much intent, read my scriptures with as much hunger or attended church with as much comfort. All people of every faith, when facing trials, need to search for peace.

If that means prayer and scripture study, do it. If it means speaking with family and letting them hold you as you cry, let them. If it means taking time to immerse yourself in the miraculous beauty of nature, do it. If it means doing everything in your power to take care of yourself physically, intellectually and emotionally, you must do it. 

For those suffering with Scoliosis, it can be hard to find peace when it feels like your own body has turned against you. You feel like an enemy in your own body. You must remember though, that the power of your attitude and thoughts is incredible. Get a daily dose of laughter, physical affection and quiet alone time to simply be at peace. Realize that this test, this trial, is not a result of your sins, misdoings or failures. It is a trial to test your faith, your endurance and mettle. It is a result of the body being a living organism that sometimes confuses messages and chemicals. You are strong, you are capable and you can overcome this. I know this. 

(This is not me, but a representation of the Plastic Corset)

Crash Course Introduction

If you look at the sidebar, you'll see a brief summary of who I am and what I'm about. 

Basically, I am starting this blog to help others that are struggling with Scoliosis and accomplishing goals that might seem impossible because of it. 

I, like many girls, got my Scoliosis with the onset of puberty. It happened fast and it got really bad in a snap. Within a few months, I went from one curve of 20-something degrees to two curves of 30, then 40...50....and the low 60s at my worst. All in a few years. This blog and eventually a novella, will tell the story and lessons I have learned from this condition. 

I want this to help you who are struggling, or know someone who is. It's a fast, seemingly unstoppable condition, but you're stronger than that. And I'm here to help show you how.