Amanda's First Surgery - Bilateral Heel Cord Lengthening

Bilateral heel cord lengthening was the first surgery Amanda had. Its sometimes called heel cord release or tenotomy. We live 1,000 miles from any family members so there was no one to help us through this emotionally difficult experience.  I was scared and felt very alone. I wasn't sure what to expect during the surgery or the recovery period afterward. The surgeons, who do this operation dozens of times each year, gave us only limited information about the process and recovery.

I tried to have a positive outlook on things that left me trembling. This is an excerpt from a  letter I wrote to our families in 2005 explaining the situation,

"Amanda is facing a tough summer.  In mid-April we brought her in for a routine check up and discovered that she has quite severe scoliosis (57 degree curvature). We decided to put her into a full body brace for the next several years. She doesn’t like the brace and we’re all having a hard time adjusting to the new routine... 

...During the same appointment we discovered that she needs to have both of her heel cords released surgically.  They are contributing to the deformity in her feet and reducing her ability to walk independently... 

Amanda’s leg surgery is scheduled for July 1.  It is a relatively uncomplicated procedure that should be completed in 1-2 hours.  It does require general anesthesia and due to some of her other issues she will need to be on oxygen afterward.  For the next 4-6 weeks she will have both legs in solid casts, unable to walk.  She will also be wearing her new glasses, her back brace and her eye patch.  Not a normal summer by any stretch of the imagination!"

2005 purple casts

Although this is a common procedure for children with special needs we had never considered surgery. Amanda had been in orthotics since she was a year old. She never owned a pair of sandals or dress shoes because they simply didn't fit over the big clunky braces. We had thought the braces would prevent her feet and legs from developing any serious problems. However, despite years in braces her Achilles tendons had tightened to the point where they were impacting her ability to balance and needed to be corrected.

The bilateral heel cord lengthening was a fairly quick procedure. In our case it wasn't combined with any other surgeries. We went into the hospital in the morning and were home by late afternoon. It took just over an hour for the surgeon to make the small incisions and cast her legs. 

She was in the recovery room in less than 2 hours. All we had to do was wait for her to wake up enough to have a few sips of clear liquid and we were on our way home. I was sort of panicked about taking her home - what if something went wrong?

To our surprise, Amanda was given "walking boots". She was up and walking the next day. We found that water shoes (the type you wear at the beach) worked better than the boots supplied by the hospital. She used a walker for support, but she wasn't a very good walker before the surgery, so that was no surprise.

Amanda is nonverbal and seems to have a high tolerance for pain so I can't comment on how painful the surgery was. We kept her on the prescribed muscle relaxer and pain medication for the first few days and then tapered her off. I do know that after a few days she gave no signs of being uncomfortable.

The casts were heavy and awkward so she couldn't walk far in them. We already owned an adult stroller and used it to get her around. I know of parents who have had to rent wheelchairs for their children while they were in casts.

When the casts came off six weeks later, she had a tiny horizontal scar on the back of each calf. It was strange to see such a small incision when she'd had casts covering her entire lower leg, from just below her knee to her toes.

2009 blue casts

At the time I was terrified. I think any time your child is going to have surgery it's frightening. Amanda has had multiple surgeries and I know now that she will come through them fine. Still, every time they wheel her away from me on a gurney I get tears in my eyes. I hate thinking about my baby, unconscious and being operated on.

Four years later Amanda had a repeat heel cord lengthening, again despite wearing ankle-foot-orthotics (AFOs) for the years between the surgeries. Amanda's feet had become deformed over the years, from walking on her navicular bones. She was supposed to have a surgery called calcaneus extension. However, the surgeons determined that her bone quality wasn't good enough for that. They estimated that the donor bone would be approximately 10X stonger than her own bone. Instead they did  a second bilateral heel cord lengthening and casting. The second time they cut through more levels of the tendon with the hope of improving her gait.

First day of school 2009 -
 if you look you can just see the cast on her left leg.

The second time around was easier than the first. Even with the modified surgery it was day surgery. We knew what to expect this time and there were no surprises. Amanda came home in casts. We were all happy to sleep in our own beds that night, knowing that in  a few days Amanda would be feeling better and walking again. In fact, later that summer we took her on a family vacation to New England. She started back to school on time that fall, despite the double casts.

If your child or family member is facing this surgery I want to put your fears to rest. Aa Amanda has had this surgery twice I can honestly say that it was not a big deal.