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Heel Cord Lengthening Surgery

My son Billy, recently age 9, is a toe walker for approx. 3 years now. He is doing quite well--yesterday had his cast removed from arm from a recent fall...very minor fracture...the orthopedic surgeon could not believe he was a Duchenne boy (deletion exon 52) and commented that he looked "spectacular" when he first saw him 3 weeks ago for initial appt. We talked a bit yesterday at cast removal appt. and I inquired of his knowledge with Duchenne..turns out he had a cousin with Duchenne... so was very familiar. I told him my concern about the toe walking and he suggested the heel cord surgery and that I should consider it. I would very much appreciate hearing from anyone who has had it done on your son and at what age and if it helped. Thanks in advance and never give up the hope!

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Permalink Reply by Susan Rathfelder on March 24, 2010 at 11:28am

I would look into serial casting first. They cast giving them a bit of a stretch and then 3 to 7 days later (depends on the person doing it) the remove the cast, recast with a bit more stretch. My son did it 2 summers ago and had excellent results. If you can get him to stretch daily and wear nighttime afos afterward then he should be able to maintain the range of motion they get from the casting. My son refused to do those things, he was older (17) and very stubborn. But it took him a year to lose what they were able to get from the casting.

Susan

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Permalink Reply by terri ellsworth on March 24, 2010 at 10:27pm

Hi Susan,

Thanks for responding and for the info. How long did he have original cast?...we do stretch faithfully..probably not enough or correctly..its part of bedtime routine and only wears afos around house or while playing Wii..picking up knee immobilizers next Monday to see if that will help..the ortho doc told me that stretching will not help at this point once range of motion is lost and that lengthening is way to go..will have to mention the serial casting to him and the neuro doc to see what she has to say....sounds like your son is doing quite well at 19..which mutation does he have?..I just read your post on "should we know" thanks again!

Susan Rathfelder said:

I would look into serial casting first. They cast giving them a bit of a stretch and then 3 to 7 days later (depends on the person doing it) the remove the cast, recast with a bit more stretch. My son did it 2 summers ago and had excellent results. If you can get him to stretch daily and wear nighttime afos afterward then he should be able to maintain the range of motion they get from the casting. My son refused to do those things, he was older (17) and very stubborn. But it took him a year to lose what they were able to get from the casting.

Susan

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Permalink Reply by Susan Rathfelder on March 24, 2010 at 10:33pm

My son went through 3 rounds of casting, had each cast on for a week. He was at about at -10 to -15 degrees maybe a little more. They were able to get him to neutral with the casting.

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Permalink Reply by terri ellsworth on March 24, 2010 at 10:49pm

Thanks again Susan...I will look into this..I hope to chat again..take care and best wishes.

Susan Rathfelder said:

My son went through 3 rounds of casting, had each cast on for a week. He was at about at -10 to -15 degrees maybe a little more. They were able to get him to neutral with the casting.