Where to Begin……Scoliosis sucks

Hello out there…..I started this blog in the hopes to have an outlet for stress, anger  and fear in regards to my upcoming spinal fusion surgery and maybe, just maybe, help someone just like me find someone who is going through or will go through what I am. I am not an English major, and my grammar might not always be on par, but hopefully you find this informative and even humorous. I have kept quiet about my diagnosis my whole life out of embarrassment and fear. This is something I have tried to brush under the rug, so to speak, so I wouldn’t have to worry or deal with it. At this point, I have no where to hide. Here’s my story……

I was training to become a professional ballet dancer. Ballet was and still is, my life. I was accepted to School of American Ballet(NYCB) in NYC at 11 years old. Living my dream and at such a young age, I spent 3 summers there.  During my 3rd summer in class, I felt a pop and intense pain in my back and dropped to the floor. I spent a week in my Julliard dorm room and went to physical therapy. I had noticed what looked like my rib was popping out my mid back. What the eff I remember thinking. What is happening to me?

When I came home, my parents took me to an orthopedic surgeon who took x-rays and told my parents my curves were already so great at 13(40 degrees, 25 degrees, 35 degrees), that I needed surgery and/or a brace to correct them. My parents opted for a back brace. Now, this back brace hurt like a mother effer, excuse my language. It was hard and plastic and had these velcro straps that sucked me in like an old English corset. One arm had to be up straight in the air and sleeping was impossible. I remember crying every single night because of the pain. I don’t think it was worn more than 6 months and I never went back for a follow up.

Through high school, I had to stop training. Going from 4 hours a day, 5-6 days a week, sometimes more to maybe twice a week for a few hours was tough. I had to give up that dream I once had and focus on new dreams. There were mornings I couldn’t get out of bed for school. Seriously, I couldn’t move due to pain and stiffness. I joined the cheerleading team and remember one basketball game in particular, I was in such intense pain, I had to lay down on the gym floor until my Dad could come get me and bring me home.

Fast forward 15 years of extreme pain, owning a Ballet school and 4 kids later,  I started to notice after my 3rd child, Will, my ribs were protruding out my back more. My husband urged me to see a new surgeon to at least get an idea of how bad if at all, my curvature had gotten. Sitting in the x-ray room watching my x-rays load onto the screen, my heart sank and I instantly became nauseous. My eyes welled up with tears as I tried to hold them back. This was serious. So very serious. I didn’t even want to walk back to the room where my husband waited patiently. Of course, it was worse. The Doctor said I needed surgery. That wasn’t news to me. What was so hard to handle was the amount my back had changed. My largest curve was now 72. I knew I wanted another child, so we decided I would try to hold off surgery until after one last baby and hopefully make it to when he was old enough to go to preschool.

After the birth of my son, Nicholas in December of 2014, I couldn’t bare the pain anymore. My arms would go numb and I had and still have shooting pains down my legs. I can sit at all and I have arthritis down my entire spine. We made an appointment with my Doctor in September. At this point, my doctor didn’t feel comfortable with my surgery. It had become so severe and difficult, I was referred to a new doctor at Stanford.

Going up to Stanford in 2 hours of traffic on a weekday really stinks. In September, I had to make 5-6 trips out there. Man is that draining. After an MRI and numerous x-rays, I was told my biggest curve was actually around 80 degrees and if I didn’t want to be in a wheel chair in 5 years, I would need surgery. This surgery won’t correct me 100% but rather 50% and I would need 2 surgeries in one day totaling 11-12 hours, metal rods down my ENTIRE spine, and  12 weeks of laying in bed followed by very light activity.  And dancing…..pffff…..dancing if at all would have to wait a year. Ummm hello, I teach ballet for a living. At this point, panic started to set in. I wasn’t ready for this. Our family wasn’t ready for this. Nicky was only 9 months old and I wasn’t even done nursing. Dancing would never be the same if I could even do it at all after this. After a long talk, we decided to try to postpone it to December 2016.

And here I am now……January 2016 and I can barely vacuum a room without intense pain. Working through the pain and popping Advil like candy is just not cutting it anymore. Nothing helps. The pain has taken over my life. Last week, I called and changed my surgery date to July 2016.

In this blog, I’ll document my daily life leading up to and through all the difficulties I deal with during and after my surgery. If I can maybe help one person going through this or meet others in my situation, that would be amazing.

 

 

 

 

 

 

 

 

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5 thoughts on “Where to Begin……Scoliosis sucks

  1. Hi . Im 46. I have two kids and never had scoliosis surgery. Im sure my top curve must be at 60 or 70 degrees by now. The last measurment was 56 degrees and that was over 20 years ago. So you are not alone. Having kids was a piece of cake for me. I had no pain with the pregnancy and getting big. But when it came time for an epidural the dr. didnt want to do it. I really dont have pain. Thank Goodness bud I do Hate being crooked and im always trying to camophlage by crookedness by wearing everything big n baggy. Id never ever would wear a biknin on the beach!!!

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    1. There was a big difference between having 2 kids and 4 in my opinion. I was fine after my 2 daughters however, the pregnancies and birth of my sons definitely made my spine curve more and I had way more severe pain. And even though I had severe pain, I still taught and danced through the entire pregnancies. I even had appendicitis with my last one and luckily didn’t have to have surgery until after he was born. If you think your back is as bad as mine, I would strongly urge you to go in and have X-rays taken. I am 13 years younger than you and I feel like I am 80. The arthritis is very extreme and not only does my back go in an S side to side, but it also curves out and also twists as well. With my case I really don’t have an option. Surgery is a must.

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  2. Hello, you are so great. My daughter has scoliosis. My young girl is 11 now. Doing Ballet danceacademy. I wonder how scoliosis can effect her ballet study. Every year there is an audition going for next school year. We are so scared she has to stop. How did you it.

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    1. Hi Susan,
      Scoliosis is the reason I had to stop training professionally. I was still able to dance and still do! I own a ballet school now, but due to how severe my curves were at the age of 13-14, I had to stop training every day. The way my curves turned ands twisted started to prevent me from doing arabesques and also prevented me from being able to hold my leg in developé as high as it was before. I also had bad mornings where I couldn’t get out of bed after training all day the day before. Is she is a back brace yet? Do you knw the severity of her degrees? At 13 my curves were 40, 35, 25 and that was enough for them to recommend surgery and a back brace. I would brace her asap and make sure its worn even though its uncomfortable! I will say that mine also even gotten way worse as an adult so just because I stopped growing, my curves have continued to progress unfortunately.

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