Summer Blog Takeover

Hey guys! My name is Cindy, and I’m taking over the blog for the summer. (Maybe longer, we’ll see.) I’m 14 years old, and I’m super excited to be on the blogging team, which pretty much consists of my mom and I. If you haven’t guessed already, I’m the daughter of Tina, the creator of this blog.

Many of you have probably read about my scoliosis story on this blog, but I’m going to share the short version with you anyway. When I was six, I was diagnosed with scoliosis. The doctor said that I had approximately a 25 degree curve. The doctors advised us to wait six months, and so we did. Six months later, we return to the doctor and find that my curve had gotten much worse. (I can’t remember many details, that was a long time ago.) My parents decided to start bracing. I started wearing a Spinecor brace soon after, and wore that for about a year. (This is when EmBraced in Comfort was born.) During that time, however, my curve continued to get worse. That brace definitely didn’t work for me, but we searched for other options.

I started wearing the Rigo Cheneau  brace next. Our Orthotist, Luke Stikeleather, whom I referred to as “Luke”, made my new brace. He is probably one of my favorite people on my medical team, and I still miss him today. Every year, my family would travel to Washington, D.C., which is where his office was at the time. He now works at the National Scoliosis Center.

After wearing the Rigo Cheneau for a few years, we started to see that my curve was progressing again. The Rigo had successfully kept my curve in check for a while, but apparently that time was over. We reached a decision with careful deliberation: I was going to need spinal surgery. Specifically, a spinal fusion, which involved lots of screws, hooks, and a titanium rod. At the time, I had just recently turned 12, and I was scared. A few months before the surgery, I no longer had to wear my brace, because they wanted to strengthen my back muscles before the operation. I actually fractured a rib a few months before, because my brace was too small, and didn’t even know it!

December 2013 was the month when the surgery would happen, and it was here. The date was just around the two-week mark.  I was terrified. Before surgery, my curve was just below 100 degrees. After, it was approximately 45 degrees.  Five awful days later, I was out of the hospital and ready to spend most of Christmas break lying down. Six months later, I was finally cleared to do all activities. It has now been two and a half years, and I’m feeling great! I play basketball, volleyball, and I lift weights.  Plus, I don’t have to wear a brace anymore, which is awesome.

Since I’m the new blogger, I wanted to try something different. I want you guys to ask questions. If you have any concerns, questions, or stories of your own, I want to hear about it. If you really like this idea, and there are enough questions, I will choose a few and answer them on the blog. That way, everyone will be able to see; a lot of you might have similar questions. Think of this as a sort of a “Dear Abbie” type of thing. I’ve been through a lot of different things when it comes to Scoliosis, so hopefully I can help all of you with your questions!

See you next week!

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12 thoughts on “Summer Blog Takeover”

  1. Hi Tina, a friend sent this to me and I was very happy to see it. I’m hoping to get some information from you. My son is 11 years old and just got the MAGEC growing rods about 5 weeks ago. He is a swimmer and even though you didn’t have growing rods, I was wondering if you have any information from others about swimming with growing rods. I have heard of several competitive swimmers with back fusion, which he will eventually have. But know very little about swimming with the rods. The doctors say it is good for him but not sure about competitive swimming. Thank you, Jackie Umstead

    1. This is Tina responding: In my 7 years of working in the Scoliosis field through my business EmBraced In Comfort, I have heard many stories, but I have never heard of any concerning kids doing competitive swim with magnetic growing rods. I will ask my daughter Cindy (guest blogger) to do some research on this topic, though, for a future blog article. I HAVE heard that competitive swimming can be rough on Scoliosis in general, but I say in this case, trust the Doctor’s opinion. I’ll see what Cindy can dig up, though, for a future article. 🙂 Thanks for asking!

    2. Check out Cindy’s article this week – it’s not an exact answer to your question, but she has some useful information there. Thanks for the question! ~ Tina

  2. Hi Cindy,

    You’re a terrific blogger. You told your story perfectly and articulately.

    Here is some background: My 12 year old son Anthony is going to have a final fusion on August 30, 2016. Anthony has already had 4 spine surgeries to insert, replace and remove magnetic growing rods, so he is familiar with surgery.

    Here are my questions:

    1. How long after the surgery did it take for you to walk without assistance?
    2. How long after the surgery did it take for you to run?
    3. Is there anything you cannot do because of the fusion?
    4. What is the most important thing that Anthony should know about fusion surgery?
    5. Have you had any complications since the fusion surgery in 2013?

    Thank you in advance. Best wishes to you and your family.

    Steve Wainess

  3. Hi.
    It is awesome and inspiring to know how a 14 years old young lady talk about her condition .
    I have two daughters, one 20 years old and the other is 15 .
    The older daughter had been on surgery three years ago. She was on a 42 degree lumbar curvature with a right lung compromise to 60% of pulmonary function . She used a brace since 15 years old, it holded the curvature for awhile, but eventually, she needed the surgery. My young daughter is 15 and soon it is going to be one year that I discovered the same curvature in her back, the same that her sister had when she was 14. Dr. said that has scoliosis too! .
    I wanted my older daughter to do swimming, ballet or some kind of exercise but she never liked since she was very focused in her violin clases and it seems to me that she never accepted her scoliosis.
    Otherwise, my young daughter do ballet since 11 and it seems to me that in some way , it is helping her scoliosis. She is very aware of all the suffering and stress that her sister went on that, and she told me that she don’t want to have surgery by any means. She stresses out a lot when she needs to by clothes , specially bathsuits. She is very aware of her unbalanced hips and suffer a lot .
    I am always telling her to accept and live with that, doesn’t matter the curvature and to use all the bikinis she want, and that nobody will notice it if she do not pay attention to it.

    Here in my country, exits excellent specialist in scoliosis but… we lack of all the moral, psicological and profesional support that I know that exist in US, and when I mean support is all the counselling to prevent exacerbation of curvature , sports, excercises before and after surgery, physical therapist etc…. We don’t have any Scoliosis Center . I don’t know if my older daughter needs any kind of exercise to fortify her back muscles after back surgery. I don’t know which is the best sport she can practice.
    For my 15 y/o daughter , I still wondering what other things she can do to support her back to avoid scoliosis progression.
    Everything I know is because I navigate throughout the Internet and find interesting topics about this condition .
    Besides, that I don’t live in the states and dreaming of going to any scoliosis center in USA, is only that… a dream

    I wish to know if there are Scoliosis centers on line that we can check FAQ and be , in some way, part or them and receive the support my daughters and I need.

    Thanks. For your time.
    Indira

  4. .
    It is awesome and inspiring to know how a 14 years old young lady talk about her condition .
    I have two daughters, one 20 years old and the other is 15 .
    The older daughter had been on surgery three years ago. She was on a 42 degree lumbar curvature with a right lung compromise to 60% of pulmonary function . She used a brace since 15 years old, it holded the curvature for awhile, but eventually, she needed the surgery. My young daughter is 15 and soon it is going to be one year that I discovered the same curvature in her back, the same that her sister had when she was 14. Dr. said that has scoliosis too! .
    I wanted my older daughter to do swimming, ballet or some kind of exercise but she never liked since she was very focused in her violin clases and it seems to me that she never accepted her scoliosis.
    Otherwise, my young daughter do ballet since 11 and it seems to me that in some way , it is helping her scoliosis. She is very aware of all the suffering and stress that her sister went on that, and she told me that she don’t want to have surgery by any means. She stresses out a lot when she needs to by clothes , specially bathsuits. She is very aware of her unbalanced hips and suffer a lot .
    I am always telling her to accept and live with that, doesn’t matter the curvature and to use all the bikinis she want, and that nobody will notice it if she do not pay attention to it.

    Here in my country, exits excellent specialist in scoliosis but… we lack of all the moral, psicological and profesional support that I know that exist in US, and when I mean support is all the counselling to prevent exacerbation of curvature , sports, excercises before and after surgery, physical therapist etc…. We don’t have any Scoliosis Center . I don’t know if my older daughter needs any kind of exercise to fortify her back muscles after back surgery. I don’t know which is the best sport she can practice.
    For my 15 y/o daughter , I still wondering what other things she can do to support her back to avoid scoliosis progression.
    Everything I know is because I navigate throughout the Internet and find interesting topics about this condition .
    Besides, that I don’t live in the states and dreaming of going to any scoliosis center in USA, is only that… a dream

    I wish to know if there are Scoliosis centers on line that we can check FAQ and be , in some way, part or them and receive the support my daughters and I need.

    Thanks. For your time.
    Indira

    1. I just want to say thank you for sharing your daughters’stories. I am definitely going to do some research to answer your questions, and I will most likely put the answers in a blog post a few weeks from now. Also, I know whats it’s like to feel self-conscious about being unbalanced. My hips and shoulders are lopsided, so I can relate with your daughter. In my opinion, she can wear any bathing suit she wants to, and I’m sure she will look fabulous while doing it!

      I will try to answer your questions as soon as possible.

      -Cindy

  5. Cindy, your a perfect fit to take over the blog! What could be fun is seeing you explore adding some video elements. You are the perfect ‘face’ for it. Not to mention articulate, and a personality to love 🙂

    1. Thanks! I’m thrilled to see so many positive comments, yours being one of them. Your idea to use video segments is intriguing, and I’m definitely going to look into it more.

      -Cindy

  6. I’m going out on a limb, but i figure you had a love/hate relationship with physical therapy. Can you expand a little more about how that went, how it helped, and what the therapists might have been able to do or not do to make the experience better?

    1. Yes, the physical therapy in the days following my surgery wasn’t my favorite thing at the time. I have done other types of physical therapies pre-surgery, though. This actually gives me an idea for another article, so I will be sure to answer your questions when I write it.

      -Cindy

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