We were incourouged to do heel cord lengthing for Tyler, age 7. We are looking for information from parents who have had to go thru this procedure. Were they in pain, did it work, How much mobility did he get back, Would you recomend procedure? We want to make sure were doing the right thing. Any response would be wonderful. Thank You

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Have they thought about serial casting? It worked really great for my son. They cast them with a slight stretch and change casts every 5 to 7 days each time giving the heel cords more stretch. My son was 16 when he had it done so I imagine that on a 7 year old it would be even more effective.
well I'm 27 with dmd i had Heel cord surgery and well id only say do it as last resort i had infection problems it my be uncommon but i had bad luck :)
Our son Justin had the surgery done when he was 9yrs old. he had stopped walking about a month before surgery. It was hell. Pure and simple hell. Our surgeon had told us that on rare occassions he would have to split the casts due to swelling, and on even rarer occassions, put new casts on. Justins cast on his right foot had to be split within an hour of him coming out of surgery due to swelling. Within a week of being in surgery, both casts were split and right before he came home we had to have new ones put on. It was downhill from there. We went to the doctor twice a week because of swelling and pain. Justin did not sleep more than an hour at a time. He had to be put on meds so he could sleep and neurotinin for nerve pain. This lasted almost 3 months. he was out of school and on homebound the entire time also. In that three months, we had 7 cast changes on the left foot and 8 on the right foot. He also developed a staph infection from a sore on his right foot.

Our surgeon was wonderful. He did everything he could have possibly done to help Justin. Justin was a worst case scenario. In fact, he uses Justin as an example to other parents and patients who are considering the surgery. He wants them to understand how bad it can be.

With all of that, Justin will tell you it was worth it. For us, if he thinks all the pain he went through was worth it, we do to. He didnt get back the ability to walk(we didnt expect him to, his leg muscles were just too weak). He is now almost 15yrs old and he can still wear regular shoes and his feet sit flat and straight.

Anyway, I just wanted you to know what can happen in the surgery. Other kids have had it with no complications at all. I just wished someone had warned us back then that it could be bad also!

--Samantha
Nick had his when he was ten. It was very painful but there were no complications. He had to wear leg braces after his casts came off. In the end it let him walk for about six more months. In my opinion it wasn't worth it. I wish I had been more diligent with his physical therapy; maybe if I had he wouldn't have needed the surgery. That said, Tyler is only seven and may have several more years to be ambulatory. I would look for alternatives before surgery but I wouldn't rule it out if it will help keep him on his feet.

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