i-am-salty-tits I apologize for the very late reply/post - exam weeks are killing me.
I wanted to not only reply to your story but share my experience with my followers as I felt it was valuable for people to learn from the experiences of this brace. As you will read, my experience was negative but this is just my experience. Please research about all brace options and never settle for anything.
When I was first diagnosed, it was extremely scary for my family and myself. I was involved in dance, skiing, and other actives which a normal hard brace would stifle. My parents did some research and found out about the SpineCor brace, a brace made from tension based bands. The website advertised the flexibility of the brace as well as the ability to wear it during activities. This was very appealing to my family who so desperately wanted me to continue to remain active. I met with my doctor during the summer of 2009 to further discuss the brace. My doctor was an hour away and was nothing more than chiropractor who was taught the method behind SpineCor by doctors who lived even further away. My parents were so hopeful about this brace but I was not fooled with my doctors empty words. I broke down in his office. The brace looked far more uncomfortable and painful than the one previously pitched to me by my doctor at my local hospital. But I was young and naive and I gave into parents.
I spent the following years in excruciating pain. The bands were so tight that I began to eat less, trying to make room for my lungs to breathe. I quit dance and skiing because it was too painful and too challenging in my brace. Like i had predicted, the brace was extremely uncomfortable, rigid, and the very opposite that this corporation had described. My curves were in the 30s when I was diagnosed and what started out as a mild case began to change into the severe category. In just months, my curves would jump 5, 10, 15 degrees. I would be seen by my doctor every three months for x-rays and to adjust my brace. Each time he would cut the bands shorter, making them tighter because his theory was that the tighter the brace was, the best results. This illogical thinking is probably what led to the progression of my curves. The brace never isolated my curves, it just made me stand straighter. But as most of the scoliosis community is aware, standing straight does not fix the problem. My doctor had flat out told my family and I that he was utterly perplexed by my case. He had seen hundreds of patients, but never one with such an aggressive curve. I was then sent to the founders of SpineCor where even further deception took place.
The founders said my curves, now in the 50s, were not bad. He continued to tell my family to at least wait until my curves hit 70 before considering surgery and my brace was in fact working. This was the very moment my family realized something was not right. Although we continued to see my SpineCor doctor for a few months, we couldn’t stop talking about what to do. My curves had hit over 70 degrees and the pain was unbearable. One day, my SpineCor doctor literally disappeared off the face of the earth. Overnight, he was gone without an explanation to his patients. At the same time, the founders of SpineCor were shut down from the hospital and, if i am correct, their research was under investigation. Coincidence?
Worried, my family returned to my hospital. My doctor was shocked we had waited so long, and frankly, so was I. Why did it take us four years to see the truth, to get a second opinion? I think we were scared. We didn’t know what was out there and i think a part of us didn’t really want to. My parents didn’t want to be wrong about their decision. They didn’t want to know that they were the reason why I needed surgery. Even to this day, my parents do not like it when I talk poorly about my SpineCor experience or that I regret it. I think deep down they know it was a bad call but they can’t do anything about it. Things happened but now we have to live with it. I think it has been hard on us for different reasons. I am mostly upset that I was lied to, manipulated, and scammed. SpineCor, in my experience, was a brace that withheld valuable information such as the criteria a patient must have for the brace to actually show results. The corporation had no care for its patients and in the long run, costed my family both economically and emotionally. My body is lined with scars from the brace and it is permanently deformed in areas where straps were too tight. Yes, I have a lot of anger towards this company but I do not think i would be able to accomplish anything if I was not forced to grow up into a mature women and develop educated opinions. I learnt how to defend myself, ask questions, and search for the truth. I learn that it is okay to question a doctor, to research before agreeing to something, and so many other valuable lessons that have come out of my situation.
My second brace, a cheneau, was far better. Despite being made from plastic, it was very easy to move in a frankly, I didn’t mind wearing it. I had surgery and although I am still in pain, I can live life fully now. I no longer have burdens about past decisions and feelings of malice towards those doctors, but rather, I have solace. I have found peace. I have moved on. SpineCor in now in my past. My brace is in a bag bidden in the back of my closet where I never have to touch it again. I never have to feel those bands hug my skin. I am done.
