#spinecor

Choosing to rock out my spinecor brace despite the scorching weather in this tropical country. Though this brace is more dynamic and flexible compared to the Boston brace I had to use during my teenage years, it still leaves you wringing in agony and discomfort when you wear it for 16+ hours straight a day. Then again, not wearing it intensifies the already present chronic back pains that comes with having scoliosis. It's just a matter of choosing which battles to fight.

When something bad happens, you have three choices: you can let it define you, let it destroy you, or you can let it strengthen you. Rise above the exigencies of your situation. Continue to be strong, my fellow scoliosis warriors.

I like how the spinecor brace is designed to be a tad bit more discreet. You can wear it outside without feeling too conscious around people. Or maybe its just the older version of me speaking -- the one who gives zero fucks to people who peruse my unusually bulky pelvic region whenever I wear the brace. Lol.

I noticed there are no tips on the Spinecor brace, only positive comments. So here are some tips on how to make it less irritating.

Wash your brace often, I know the doctors will tell you this but it is important. It keeps it clean but it also softens the edges.

When you have to go to the bathroom go! Like seriously you could get an urinary track infection and those are not fun.

For rubbing and cuts try putting on band aids, gauze pads or even pads.

If none of the above work try a corn cushion held in place with a band aid. 

Tylenol is your best friend.

Wear undershirts, something that is sweat resistant and light. (It keeps the brace from slipping and reduces cuts)

To hide the brace wear white shirts, the brace will blend in fairly well.

Baggy pants hide the shorts fairly well, or wear long shirts (or something similar)

In the summer vests are your friend. Also try shorter shorts or skirts.

If its a really hot day just run around without a shirt/pants.It doesn't show much and it keeps you cool.

Also in the summer, put an ice pack on the back of your neck, put your feet in water, get your hair wet. You will get hot.

If you wear a bra that has a v shape, one side will stick out from the diagonal strap. Try a sports bra, a baggy shirt or lightly wrapping a tensor around that area.

If you get head/neck aches try and see a chiropractor, seriously it helps.

If you have scars from previous surgeries and the brace is irritating it, put a gauze pad over it.

Pneumonia and spinecor does not mix. Try to keep your brace on for as long as you can, but if you can’t that's okay try your best.

Here is how to put on the brace: https://www.youtube.com/watch?v=ASw2q5btr20

And here is their website: http://www.spinecor.com/Home.aspx

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. 

Over the last few years, I have worked with the amazingly talented photojournalist, Hannah Yoon, to create and document the crazy world of living with scoliosis. Over the next few days, I will be posting the photos to raise awareness during scoliosis awareness month and offer a window into what my hectic life has been like. Please message me or comment if you enjoyed this little segment, have any questions, or would just like to talk. 

To hit off this segment, this is a picture we took early in my journey. This is a picture of my old SpineCor brace which I was never really a fan of. The traps have left permanent scaring and disfigurement. It did nothing for my scoliosis and in my experience, the doctors who assisted on my case were very biased and more concerned with their numbers rather than the actual patient. I could go on about the negative but despite all of that, this brace hold a special place in my heart. It was in those first few years in my brace that I was able to mature and become who I am today. I have experienced things that many will ever get close to, and i did it all through the weird comfort in this brace. Good and bad, this brace was instrumental along my journey. 

My scoliosis journey started when I was about 12. My mom took my to my family doctor for my annual physical. The appointment was fairly normal, my doctor took my height and weight and asked me questions about my health. He then asked me to bend over and touch my toes, a request I preformed every year for him with no problem. This time, he asked my mom to come over and looked at my back. It took one minute to diagnosis me with scoliosis. One minute and my life would change forever.

I was then sent to my local hospital for x-rays and to speak with a specialist. After taking a set of x-rays, I was officially diagnosed with adolescent idiopathic scoliosis with a double major. Essentially, my spine had two curves in it which were both now in the low 30’s. It was suggested that I get a brace immediately to stop my scoliosis from getting any worse. A week before my brace molding at my hospital, we canceled my appointment because my mom had found a new brace which would fit my active lifestyle much better. In October 2009, I left my hospital and I got fitted for my SpineCor brace. I quickly learnt that the brace was no more than false advertising and an excessive amount bands. Contrary to the claims made by the founders, the brace provided no flexibility and was extremely hard to cover up and move. The bands, which were tension based, pulled my body in an unnatural way causing permanent chafing and scars. Every three months, I would return to my doctor for x-rays and to tighten the straps. It didn’t take long for both my doctor and my family to notice how drastically my curves kept increasing. My curves had reached 50 degrees and my case was becoming too overwhelming for my doctor. We spent the next year listening to my doctor and the doctors at SpineCor tell us that surgery isn’t necessary till 70 degrees and that I was fine and the brace was working. Yet in the back of my head, I knew it wasn’t. I then began to experience pain which only increased as my curves spiked to 60 degrees. My family decided that this brace was no longer working and we returned to the hospital to be followed by a surgeon. I took a set of x-ray which confirmed that surgical interventional was required. My scoliosis had reached now 70 degrees. I was put on the surgery waiting list which would take about a year. In the meantime, I was casted for a new brace, the Cheneau. This hard brace was so much comfier and despite it being made out of plastic, I actually found it more flexible and easier to cover than the SpineCor. After five months in the brace, I got the call that I was having surgery and the brace was no longer necessary. I was on the list for just about a year when I got the call and after a total of 5 years of bracing, being told I no longer needed it was the greatest news of my life. I had spinal fusion surgery on March 6, 2014. I was fused from T2 to L4 which is pretty low down. While operating, my doctor said that if I had waited any longer for surgery, my lungs would have collapsed. Recovery was definitely hard and I took almost twice as long to accomplish things as other people who have had the surgery but I never let that deter me from trying my hardest and reaching the goals, however small, that I wanted to achieve.  Surgery was the best thing to happen to me. In a few months, I will be one-year post op! I have been able to get into a good university, enjoy my friends and family, and still participate in school activities. Surgery has brought me a new self-confidence that I never knew existed within me. I have this new found love for life and myself in general. My journey ha not always been easy but it has been worth it. If you are wearing a brace, keep wearing it for however long the doctors say because it may be the difference between having surgery or not. Your brace is there to help you, never let it be the thing that prevents you from being yourself and doing what you love. Wear it with pride! Those who are thinking, having, or already had surgery, keep fighting. Recovery may seem daunting and hard but if you keep pushing yourself, you will see improvements and it will be worth it. Please note that everyone’s experience is so different. Just because I didn’t get results or found things challenging from one treatment option, doesn’t mean it still isn’t a good option for you. Research everything and don’t be afraid to get a second opinion or speak to someone on their experience before making a decision. I’m here if anyone would like to vent, has questions or just want to know more about my experience.

When I look back on my scoliosis journey, there is a part that is tainted with negativity and regret. Yet without those moments, the choices I have made today and the life I am now able to live would not have been possible.

After being diagnosed with scoliosis in 2009, my doctors were quick to send me for a brace mould. I was thrown into a world where time was of the essence and every decision I made, everything I did, would impact my life and my medical condition. But despite this large responsibility my 12 year old self was given, there was little talk about everything. No one told me about other treatment options or even about scoliosis. It was go, go, go.

We quickly learnt that my active lifestyle was no fit for a restricting plastic brace. I never even made it to a consultation for the brace because my family had decided to go a more "alternative" option. Although still a brace, my new "flexible" spinecor brace was a perfect fit for me and would certainly do the trick. Claiming to be flexible, moveable and disguiseable, over the 4 years I spent in that brace I learnt that it was anything but. The straps caused extreme pain and to this day I still have marks left behind where the bands wrapped tightly around my body. I could hardly move, breathe or eat. I wore my brace religiously but that didnt stop my curves from getting any worse. Each month, my x-rays were evidence that the brace was not helping. My family was too blinded by fear to do anything and my doctor seemed to think that it was normal, which should have been the first signal that something behind the spinecor doctor was off. 

Those 4 years in my brace were the worst four years of my life. I was in constant pain and I was afraid to leave my house because I was both living in fear of my next pain episode or embarrassment from those bands. Increasing over 15 degrees a year, my family decided surgery was the best way to go. My doctor brainwashed us into thinking surgery was not necessary until over 70 degrees and that it would ruin my life. What ruined my life was actually believing in him. Surgery was the best thing to happen to me. Our surgery decision was influenced by my pain and deformities and the fact that my doctor had fallen off the face of the earth..a week before a major appointment with him. At the same time, the founders of the brace were kicked out of the hospital they practiced at. Coincidence? Probably not. Either way, I was no longer returning to spinecor and its false advertisement. 

Hello hello,