Hi,Dear Parents,My son's legs are now folding at the knees at about 20 degrees. I am thinking of taking him for a heel cord lengthening procedure.I know it will not bring back his mobility since he has been in wheelchair for a year now.But at least he will still be able to wear shoes normally and rest his feet without a problem on the wheelchair's footrests.How complicated is the process?Is it too painful for the boys?Warm regards.
My son Matthew had tendon releases in both ankles when he was 11 for similar reasons. His feet were being pulled down and inward (equinus deformity) despite his wearing AFOs. It was apparent he wouldn't be able to wear shoes, so my wife and I decided to have the surgery done. His surgery was done at Shriner's Hospital in Springfield, MA.
The procedure was relatively quick (Probably less than 2 hours start to finish). He did require anesthesia, yet that hospital has much experience treating people who have DMD. Matthew did well through the procedure. Recovery was more challenging. He experienced a good deal of pain after surgery and sensitivity for some time. Because of that he was protective of his ankles for a long time. Even after surgery Matthew always wore AFOs to prevent further deformity (tendons are released, not completely severed) and this gave him a feeling of security.
Despite the discomfort, I believe the process was helpful and would make the same decision today. We have very cold winters, shoes are necessary. Also allowing his feet to continue deforming would have made it difficult to be comfortable without special bracing or cushions.
Talk this over with the surgeon. He might know other families you can speak to about the experience.
Best of luck.
Hello Brian,Thank you for you response.It is really encouraging to hear you would make the same decision today as you did in the past regarding your son's heel cord procedure.It gives me courage and hope to move forward in that direction as each day finds my son's feet bending inwards more and more.It would be really great if you could assist me with the surgeon's name or email address so i can get in touch with him regarding the issue.Thanks again and have a blessed new year with Matthew and the rest of your family.Regards.