Bilateral heel cord lengthening surgery

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“Bilateral heel cord lengthening” sounds horrendous. For a few days it felt like it. But it was probably the best thing I did.

Before being diagnosed with Becker muscular dystrophy I was walking on my toes. It wasn’t like I could have been mistaken for a ballerina, but rather I walked more on the balls of my feet than my heel. The only way I could get one heel to touch the ground is if I bent my other knee and forced it down. Walking like this didn’t hurt and surprisingly I was NEVER teased for walking this way.

It was actually this walking style that led us to an orthopedic specialist when I was about 13 years old. He is the one that sent us to a neurologist who ultimately determined that I had muscular dystrophy. Back we went to the orthopedic surgeon who highly recommended the bilateral heel cord lengthening surgery which we did almost two years later.

The type of bilateral heel cord lengthening surgery I had was fairly simple. They would release the heel cord by cutting it in a “Z”-ish formation and then sew it back together at different connection points. I would wear casts up to my knees on both legs for six weeks.

I personally was neither anxious or scared of having this procedure done. It was happening over summer so I wouldn’t miss any school and by the time I got back to school it would be as though nothing happened.

The surgery went very well such that they made me stand up on my feet the very next day! This was the worst moment, and I stress MOMENT of the entire process. At the time it was the worst pain I had felt (until I recently had kidney stones). But it didn’t last very long and ultimately made me feel very confident that my newly sewn-together heel cords weren’t going to fail.

I was in the hospital for a few days until I faked having a bowel movement so I could go home. After all that they wanted me to stay because I hadn’t pooped yet? At any rate, my family and friends visited, brought me scratch off lottery tickets and a slew of other gifts. It was great.

At home I rested for several days and started walking around the house with a walker. Within a week I didn’t need the walker anymore. Shortly thereafter I was outside playing basketball, hitting a tennis ball against the wall, and even went golfing with my dad. It was like doing things with heavy boots attached to my legs. It didn’t even hurt anymore.

When I finally got the casts off six weeks later, I used crutches for a short time and went through several weeks of physical therapy to re-learn how to walk again. Frankly I didn’t understand why I had to re-learn how to walk again since I was actually walking just fine. But the exercise did me good.

I went back to school in the fall and on the first day showed off my shiny new heel cords, scars and all. It was definitely easier to walk and made me feel more “normal.” It didn’t necessarily make climbing steps any easier but overall the effect was very positive.

So if you have a good surgeon I highly recommend having the bilateral heel cord lengthening surgery because it worked well. I have now gone 20 years with very little reversion to the way it was.

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6 Responses to Bilateral heel cord lengthening surgery

  1. lisamarie says:

    Hello there. first time to the site….my little girl Katelyn is ten years old and has Wolf-Hirshhorn syndrome. she is 40lbs. 40inches and can only crawl or pull herself up to standing as she is on her tip toes with knees bent and fanny out. I have put off the heel cord lengthening surgery at All Childrens Hospital about three times now. Partly out of the fear of her enduring alot of pain and because she cannot talk, not getting relief. In addition to that I am a single parent with no family or friends or help of any kind. I’m told she’ll be in a cast from hips to ankles with a bar in the middle? New surgery date is Jan. 18th 2012………………help

  2. Lori says:

    Thanks for sharing your story. We are considering this surgery for my daughter who his walking on her toes due to amniotic band syndrome that affected her leg muscle. I am concerned about the surgery causing her muscle to be weak. She LOVES soccer and I am wondering if she will still be able to run well?
    Thank you!

  3. Heather Crowe says:

    My son Brenden is 5 years old and was diagnosed with DMD the physcial therapist suggested the surgery but also said it affects children differenly, im so scard for my baby I want his life to be the best it can possibly be, any sugestions to help would be welcom, please.
    Heather Chattanooga, TN

    • Dan says:

      Hi Heather, I am by no means a medical professional but in my experience the surgery helped me walk more comfortably and easier. I would definitely suggest looking into it further. The recovery period is fairly short. As with any surgery there are risks, but in my case the benefit outweighed the risk. Thanks for checking out the site.

  4. lisa and Josh says:

    I can relate to this story, it is exactly what happened to my son. We didn’t realize he had MD until we seen the ortho doctor. No one know he had it till then. When we finally had the surgery about 2 years later it was the most wonderful thing for him, best thing we’ve ever done. He still walks today at almost 18 years old, he is walking on his tip toes again, mostly on one foot. He will be having surgery again, I totally agree with this operation. Also, Tricia I know exactly how you feel, and we are still heartbroken. Please know you are never alone, there are many people who are going through the same thing, my son was told he had DMD when he was 8 but almost ten years later he is doing great and still walks today. There is always hope. Good Luck,

    lisa josh, Nova Scotia

  5. Tricia says:

    Hello there,

    Thank you for your blog. I came across it a few days ago. My son has just been diagnosed with BMD. He is almost seven and is doing really well. We are in shock and heartbroken. I can barely breath. Your words are inspirational and give me hope.

    Many, many, thanks to you.

    Tricia from Victoria B.C

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