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reflections on my spine surgery

July 28, 2011

When I was quite young, I sat out of gym class because I had hips that ached.

When I was in elementary school, the nurses did a scoliosis check on everyone.
I was told I had a slight curve, but nothing to worry about.

When I was in high school, the nurses checked each PE class for scoliosis.
I was asked if I played tennis or basketball, as one shoulder was more pronounced than the other.

When I was 16, I went to a chiropractor for my back pain.
He was the first person to even suggest an x-ray, which came back to show a pretty fantastic curve in my spine.

We went to an orthopaedic surgeon in South Bend who suggested a spinal fusion and rods.  I got a second opinion, thanks to a referral to Shriners Hospital for Children in Chicago.

Dr. Lubicky in Chicago diagnosed me with Bertolotti’s Syndrome in 2003. Basically, the lowest vertebra in my spine was extended and fused to my pelvis. This caused my spine to curve and the muscles to grow strangely to compensate for the imbalance.

In June of 2004, mere weeks after my high school graduation, Dr. Lubicky performed a posterior spinal fusion where he removed the extended part of my vertebra and fused the bottom three vertebrae of my spine with screws. I stayed at Shriners for over a week and toured my college that summer in a wheelchair.

I can’t say enough about how great Shriners Hospital for Children is. The hospital itself is a beautiful facility but the staff is incredible. When I was feeling my most helpless and vulnerable, the nurses made me feel comfortable. (Except for the night nurse. But she didn’t realize I skipped the NICU and could still take morphine through the night.)

I started college in a back brace.

I wore that back brace for four months or so, just to ensure proper healing and to encourage my spine to straighten.  Six months later, I was cast as a dancer in the college’s musical.

I’m still crooked; the hems of skirts rarely look straight on me. One hip is visibly higher than the other so I avoid tight-fitted clothes. I have a glorious scar from the middle of my back down to my pelvis, and I still have numbness is some areas. I get pain from time to time, mostly when I’m feeling stressed or have been sitting or standing for too long. Sometimes the pain is a dull ache, sometimes it manifests like sciatica, and sometimes it’s like shooting daggers. Never does it last too long and never does it keep me from doing anything.

Seven years later, I can truly say my scoliosis, Bertolotti’s syndrome, and posterior spinal fusion have not kept me from doing anything. (Except, perhaps, wearing backless clothing.) I run, I bike, I do hot yoga, I dance, I ride rollercoasters, I carry enormous trays of food when waiting tables, and I feel pretty darned good.

The audience I tell this story to is twofold.

  1. I tell this story because I realize there’s little information on Bertolotti’s syndrome on the web and what information is out there is quite scary.
  2. I also tell this story to my small blog community, because this is a big part of me. This procedure colors a lot of my decisions regarding my body: what I put into it, how I use it, and how I decorate it. I eat fairly well and maintain a healthy diet. I do my best to exercise regularly and rarely have back-related pain. But I recognize that too much extra weight might cause extra stress. I carefully choose my clothing, as I am a bit self-conscious about my wonky hip. But I take it all in stride when my coworkers call me Gimp.

I am lucky that my condition was treatable, because for many of the kids at Shriners that is not the case. I have never regretted treating Bertolotti’s syndrome surgically; if it saved my spine from curving further, then that’s enough for me.

If you’re interested, you can learn more about Shriners here or consider making a donation. Justin Timberlake has.

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9 Comments leave one →
  1. July 28, 2011 12:32 pm

    What an incredible journey you’ve had.

    I can relate to your story in a way. I had a heart condition throughout high school. After a lot of tests, different medications, and heart monitors, I ended up needing heart surgery in January of my senior year. It makes me hyperaware of caffeine and other things that I put into my body as well. And every January 9th, I celebrate my heart’s “anniversary”, if you will.

    Thank you for sharing your story.

  2. July 28, 2011 12:33 pm

    My story is so similar, though mine was severe scoliosis, not Bertolotti’s Syndrome. I, too, spent a good deal of time in a back brace & have a heckuva scar (neck to tailbone) that doesn’t look so hot in backless clothing. My spine is still crooked, which, for me, means uneven shoulders & a slight hump along my right shoulder blade. For me, it also still means a lot of pain. My rods worked & are in the right place; they’re doing their job, but I have inexplicable chronic back pain, even 14 years after my surgery.

    Thanks for telling your story. I told mine awhile back, too (http://www.suburbansweetheart.com/2011/06/you-can-do-it-put-your-back-brace-into.html), & got so much support from my blog friends, I was really overwhelmed. I think it’s important to speak up about medical issues like this, if only to let others know they’re not alone.

  3. July 28, 2011 2:14 pm

    Thanks for sharing such a personal part of your journey. I didn’t know you had spine surgery and before this post also knew nothing about Bertolotti’s.

    I’m glad you received so much support and great care. I can’t relate personally, but my father has a lot of back problems (he’s actually partially paralyzed in his left leg from them) and I know that it definitely impacts your life. I think it’s awesome that you are talking about it and encouraging others to engage in the discussion as well.

  4. July 28, 2011 9:55 pm

    Great post, Renee. It was interesting to read about how our experiences were different. My curve wasn’t due to Bertolotti’s syndrome, and I never had to use a wheelchair or back brace. However, your musings on how you see your body, take care of it, and decorate it with certain clothing, were spot-on and I totally relate.

    What you said about worrying about extra weight — I’ve thought about that, too, especially if it’s concentrated in the FRONT, like if I were to get pregnant one day. My back hurts a lot if I stand too long (especially if it’s a hard surface), or sit somewhere without back support (on a stool or simply on the ground), so I can only imagine what it would be like if I decided to carry a child.

  5. July 29, 2011 10:05 am

    I’m excited for the idea of people searching the internet for information about Bertolotti’s syndrome and finding this post. They’ll be so uplifted, it’ll be amazing. Your story is amazing. Thanks for sharing

  6. July 30, 2011 3:41 pm

    Thank you for sharing such a personal story! I am sure that your journey will help others see that a normal life can be lived with such a condition. I think you are very brave! I had scoliosis as a child and slept with a back brace for years. Not that it compares to what you went through, but I definitely identify with your issues. 😉

  7. July 31, 2011 2:04 pm

    Great post! I love hearing stories about people who overcome their medical condition. I used to work at a pain clinic and I assisted the doc with spinal procedures. There are definitely people who use their ailment as a crutch and say they can’t do anything…but then there are awesome people like you who embrace it, learn about it and educate others, and don’t let it stop them from doing amazing things!

    Also, I gave you a blog award! http://www.marielmohns.com/2011/07/catching-fire.html I know they are silly sometimes, so I won’t care if you don’t play along 🙂

  8. August 2, 2011 9:01 pm

    Thanks for sharing your story. (And thank you for reaching out on Twitter the other day.) Wonky hips unite. ❤
    Glad the pain isn't too bad anymore, but I know when it is, it makes everything harder. Especially happy you were able to detect it and treat it fairly early. Hugs and love.

  9. Heidi permalink
    February 28, 2013 1:11 am

    That story made me bawl almost. That is word for word my experience minus the slight curve but Seattle children’s hospital said I have that. I am a senior in high school about to graduate and I might be “wheeling” instead of walking with classmates. I am freaking out and if you can I am asking for you to email me and possibly help me. I am terrified and I’m only 18! I use to be an all American girl when it came to sports now it hurts tremendously to do anything and I can barely walk even though I have the proper muscles and eat right. I even have a back brace (one that costs over a thousand dollars that the hospital graciously gave for free to me) and it does nothing. Not trying to be a sob story but I want my life back and really need to start talking to someone and it is so rare to show symptoms so there’s no one around for me to talk to.

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