The femoral derotational osteotomy: The longest marathon.

14 Jan

I was born with Cerebral Palsy. In my case, I was born with my femurs angled inward and my hips tilted forward, and my angled femurs caused my feet to point in as well. Therefore, as a kid, when I would walk, I’d end up tripping over my feet, which made it harder for me to walk properly. On October 8, 2001, I had my first intense operation, a femoral derotational osteotomy. In some ways, it doesn’t seem like that long ago. The femoral derotational osteotomy was an intense operation in which the surgeons straightened out my femurs in order to allow me to walk straight. Rods were also used in order to keep my legs straight, but they would be taken out the following year once everything had fully healed. Even though the operation itself isn’t something I remember since I was asleep, I do remember the conversation I had with the OR nurses before I was put under. When the nurses looked down at me on the operating table and asked me to tell them about my animals, I proceeded to include the names of my pets at home as well as the names of all of my stuffed animals (and I had a lot). The nurses just smiled. They didn’t seem to mind.

When I woke up in the ICU, I had on two long-leg casts that were connected by a bar in the middle. I also had an epidural, so I couldn’t feel the full extent of my pain. However, those first few days in the ICU were spent not eating as much jello as I could manage, but continually getting sick from the anesthesia that had put me under during the operation. Trust me, having a nurse come over with a tube to suck the vomit out of your throat is completely disgusting, but it’s better than having the full taste of vomit in your mouth by waiting for it to come all the way up. Though I did eventually leave the ICU and Shriner’s after my first intense operation, I had to keep those long-leg casts on for the next 8 weeks, and during those 8 weeks, I became completely dependent on my parents. They had to help me shower, help me go to the bathroom, and help me change my clothes among many, many other things. It was only the beginning of the very long road to gaining my own independence.

In many ways, the femoral derotational osteotomy was the beginning of a marathon that would last much longer than just a few days. It was the beginning of the complete hell I would go through over the next 6 years until I reached the age of 15. By the age of 15, I had endured 3 intense surgeries, 15 years of physical therapy, and more pain that I ever thought possible. However, despite all of that, I persevered. I pushed through because I knew it was the only thing that would allow me to be independent. In the beginning, after that first operation, my parents were helping me do everything. I was completely dependent on them. However, by age 15, I was not only independent, I was gearing up to leave home the following year to attend an all-girls’ boarding school in North Carolina. Though leaving home was and always will be one of the hardest things I’ve ever done (not including my operations and all the intense physical therapy that followed them), it was also the best decision I ever made for myself. As with so many other things in my life, I’ve learned from it all, but more than that, I have been able to better understand the person I am supposed to become. Though I would have never imagined that I’d be using experiences from my own life in order to relate to and lift up other kids with CP and other disabilities, it’s beginning to feel like a permanent place I belong.

In the right hands, a memoir is the flecks of gold panned out of a great, muddy river. A memoir is those flecks melted down into a shapable liquid that can be molded and hammered into a single bright band to be worn on a finger, something you could point to and say, “This? Oh, this is my life.” Everyone has a muddy river, but very few have the vision, patience, and talent to turn it into something so beautiful. That is why the writer matters, so that we can not only learn from her experience but find a way to shape our own. -Ann Patchett, afterword of Autobiography of a Face

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36 Responses to “The femoral derotational osteotomy: The longest marathon.”

  1. photosfromtheloonybin January 14, 2013 at 8:08 am #

    This is by no means a comparison to what you went through because it’s not even close, but I know what being sick from anesthesia is like. I had to have jaw surgery when I was 18 years old to correct an underbite, and they took an inch of bone out from each side of my jaw and then wired my jaw shut for 8 weeks. I was sick from the anesthesia with my jaw wired shut – yikes!! I know you are wondering how is that possible?? Well, it wasn’t – I had to swallow it back down again while my mom sat beside me with wire cutters just in case. You have sure been through a lot in your life Amelia, and I admire your strength. You are an amazing woman!!

    • ameliaclaire92 January 19, 2013 at 11:54 am #

      Wow. Ick. Yes, I definitely don’t miss being sick from anesthesia.

  2. Lisa W. Rosenberg January 14, 2013 at 9:28 am #

    I’ve been gone from the blogosphere for a while, just because too many other things have been demanding my focus. I’m so glad I stopped by today. You never fail to amaze me with your honest, deeply moving, but never sentimental description of the events in your life.

    Inspirational as always!

    • ameliaclaire92 January 19, 2013 at 11:55 am #

      As always, thank you so much for reading, Lisa. I appreciate your support.

  3. frankoshanko January 14, 2013 at 10:38 am #

    Wow. Nice job of painting a picture of your trials. Even nicer perseverance!

  4. Wilhelmina Upton January 14, 2013 at 1:55 pm #

    I admire the strength you got and still have to have been through all of the procedures in your life. I was also sick from anesthesia after they cut out a part of my femur. I hated that feeling and I threw up the whole day after waking up.

    Keep being so brave!

  5. LA Edwards January 14, 2013 at 5:39 pm #

    How brave of you to share such a private experience with us. You have preserved in a way most people could not fathom or even grasp. However, there are those who have likely gained a sense of strength from you knowing what you have endured through your disability and have not allowed it to rule or define you. You should be proud of such an accomplishment; persevering through such struggles is not easily accomplished. Yet you accomplished this difficult task with grace, strength, and perseverance. A role model for so many suffering from cerebral palsy or other disabilities. That it is indeed hope and possibility if one faces their demons, it is amazing what one can accomplish. And for a girl so young you are amazing. A beautiful person both inside and out, and I am confident those who read your story, follow your blog, and read your eventual memoir, will find the strength to reach out and follow through with their endeavor, having gained the understanding and strength that despite the pain and grueling years of therapy, can grow into a wonderful, bright, strong, and ambitious girl, such as yourself who lives everyday with CP and continues to amaze those around her with her actions and words each day. You have made a tremendous difference in so many peoples lives, including mine. You have given me the strength and knowledge I needed to understand what my daughter must be feeling and experiencing, even though she is unable to communicate those feelings and will never mentally be as bright as you, she is a person just the same with feelings and desires to be treated with respect and not feared because she is different. You are one of the lucky ones Amelia; I feel blessed to have had the pleasure of knowing you. You are a true godsend. Thank you for being so brave and for your perseverance. I firmly believe that your words will touch and inspire many, giving them the strength they need to preserve.

    • ameliaclaire92 January 19, 2013 at 11:57 am #

      Thank you so much, Louise. I really needed this today!

  6. 1pointperspective January 14, 2013 at 6:29 pm #

    I’m a physical therapist. I’ve had quite a few of the kids I work with have derotation osteotomies, but I’ve never had one describe the experience to me. One of my patients just had spinal rodding surgery. I think it was the 18th or 19th surgery of his young life. People don’t realize what life can be like for others, unless someone tells them. Thanks for doing just that.

    • ameliaclaire92 January 19, 2013 at 11:58 am #

      I’m so glad I could share my experience with you to allow you to better relate to the kids you work with.

  7. Rosie Baillie January 15, 2013 at 6:28 am #

    Thanks for sharing this story with us all, I really admire your honesty, strength and perseverance.

  8. mcwoman January 15, 2013 at 7:19 am #

    Your testament is to your courage to face such pain and everything that goes with a serious operation. Keeping your eye on the prize of independence very brave. Not everyone has your strength and perseverance. I assure you, Amelia, you will be successful at whatever you decide to do with your life because of the inspiration you give to others. You go, girl!

    • ameliaclaire92 January 19, 2013 at 11:59 am #

      Thank you for your support. It means so much to me.

  9. P. C. Zick January 15, 2013 at 8:52 am #

    Thank you for this post. I’m going through quite a painful physical experience right now – although I’m in no way comparing it to what you’ve gone through – and your post reminded me that we make a choice on how we handle those physical challenges. You’ve given me inspiration today to push forward despite the pain.

    • ameliaclaire92 January 19, 2013 at 12:00 pm #

      I’m glad I could be an inspiration to you. It’s what I’m trying to do by sharing my story, and I’m so glad to know you and so many others are getting strength from my words.

  10. N January 15, 2013 at 6:00 pm #

    Thanks for writing this… it brings back so many memories. My experience was nearly identical to yours. Anesthesia- definitely not fun. And I hated those long casts with the bar across them, too!

    • ameliaclaire92 January 19, 2013 at 12:02 pm #

      Though I’m sorry if this post brought back some hard memories for you, it’s always really special to come across others who I can relate to in terms of my story.

  11. Laura January 15, 2013 at 6:30 pm #

    I cant even imagine!

    • ameliaclaire92 January 19, 2013 at 12:03 pm #

      Though I lived it, sometimes it’s hard to really see how far I’ve come since then.

  12. belasbrightideas January 17, 2013 at 9:26 pm #

    The longest marathon, indeed. As Laura just said, it’s hard to imagine. We all have challenges in this life, but sometimes it seems certain people get a bit more than their share. Blessings, Amelia.

    • ameliaclaire92 January 19, 2013 at 12:03 pm #

      As always Bela, thank you for the support. It means so much to me.

  13. Yael January 29, 2013 at 3:45 pm #

    My daughter had bi-lateral de-rotational tibial and femoral osteotomies in June 2012. She was 10 and is now 11 years old (her birthday is today). She also had an SDR at 4 years old and began walking independently at 6 years old. She is doing really well right now, but she struggles every day, and I know she may have regression as an older teenager.

    I am always interested to hear the perspective of others who have been through similar things. As a parent, each operation and therapy decision is agonizing. Will there be enough benefit to compensate for the pain? Are we doing the right thing? I am so grateful to read your story. I like your terminology: “the longest marathon.” That certainly feels like what my daughter has been through. If you want to see her story, here is the blog I have been keeping about her journey: http://specialmommyblog.com/

    Thank you for your candid account. Best!

    • ameliaclaire92 October 9, 2013 at 11:09 am #

      It was all incredibly difficult, but it got me where I needed to be.

  14. stephanie domski June 13, 2013 at 5:51 pm #

    Hi, I have a 9yr old son with cp. He has had a baclofen pump implant in 2010 at age 5 and has since gone through many phenol and botox injections, all of which are maxed out. Our next step is an osteotomy and soft tissue releases. As hatd as the baclofen surgery was mentally, this one takes the cake thus far. I am trying to find out more about the procedure and if its the right thing to do for him. If you would be willing to share your thoughts it would be much appreciated. Thanks, Steph Domski

    • Yael June 17, 2013 at 11:38 pm #

      Hi Stephanie–I know exactly how you feel. We did not do all the baclofen stuff as it was not appropriate for our daughter. She had an SDR at 4 years old–big surgery but NOTHING compared to osteotomies (of femurs and tibias on both legs). I have to say for all my fears, it was a good thing to do. Please look at my blog that follows my daughter’s progress. There are lots of videos–before and after. It has been a hard year, but worth it. My daughter had the surgery one year ago at age 10. http://specialmommyblog.com/

    • ameliaclaire92 October 9, 2013 at 11:11 am #

      Though all of my surgery recoveries were incredibly difficult, they got me where I needed to be. I wouldn’t be able to walk independently at 21 without the doctors and physical therapists who refused to stop believing in me.

  15. Emma Haynes September 1, 2013 at 6:09 pm #

    I came across this page searching for derotation osteotomy as my daughter is likely to be going down this route. I am so scared of what is going to happen. I really don’t want her to have it done. She hasn’t had surgery before, only botox injections and an op on her eyes, nothing really serious like this. She is 7 at the moment and took a few independent steps over the summer. I was so proud of her. She’s such a happy girl, I’m so scared that having this done might change her attitude to her physio which she is co-operative with at the moment and her outlook on life generally. Reading your page has made me worry more than before. Was it worth having the operation done? If you had your time again, would you go through it again, knowing what it was like? I really am struggling with seeing the positive at the moment 😦

    • ameliaclaire92 October 9, 2013 at 11:14 am #

      It was worth it in the sense that it helped me to be independent. I’m 21 and walking independently, and I wouldn’t be here without the doctors and physical therapists who pushed me.

  16. Joan and Dave October 9, 2013 at 3:40 am #

    Hi! My grandaughter who is 7 is due to have the same op as you had in December 2013. Her family are all worried sick about it. Was all the pain and suffering worth it please? And how long were you in pain after the operations. She can walk alright but the surgeons have told us that she will be prone to disclocating her hip.

    • ameliaclaire92 October 9, 2013 at 11:19 am #

      Joan and Dave,
      The pain was worth it because I am now 21 years old, living on my own and walking independently. In terms of the pain, it’s hard to quantify the length of it. So many of those years are a blur for me because they brought me such pain. Most of the pain resulted not from the operation itself, but from the intense physical therapy I had to go through after the operation.
      It is understandable to be worried. It’s a big operation, and it’s a hard road following the operation. For me, it was the beginning of what allowed me to eventually be independent. Granted, everyone responds differently, and it is incredibly hard to know the results beforehand.

  17. Rachael June 23, 2014 at 5:24 am #

    Hi Amelia, my daughter Eliza (aged 15) is scheduled to have this surgery on July 1 which is in one week from now. She has spastic diplegia and over the years has had botox, rancho procedure on both ankles and this year in January she basically had her left foot reconstructed which involved 10 weeks non-weight bearing and 12 weeks in plaster. She is a really active teenager who rides her horse and swims and is generally independant. She does not use a wheelchair usually unless in recovery mode. She is having this surgery as she is quite inwardly rotated from the hips so the hope is that this surgery will straighten things out somewhat. We know the recovey is likely to be long but she has always recovered well from her previous surgeries as she is very motivated to get back on her feet. We are in the final week before surgery and almost feel like not going through with it or maybe just doing one leg to make the recovery easier. Up until now we had been thinking it was better to do both at once and get on with the recovery. I am not really expecting you to say what we should or shouldnt do but just wonder how her story firs with yours? Given that she is quite robust and strong now maybe we should just carry on the way she is? Its hard in some ways that she is nearly 16 as it is just as much her decision as ours (as it should be) – just means she is more aware of what she is giving up over the recovery period etc….any thoughts are welcome! Rachael

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