any experince with heel cord lengthening?

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bex271

Mouseketeer
Joined
May 6, 2007
I was wondering if anyone's child has had this done, my son is having this in 2 weeks and from what his therapists and doc told me it's not that big of a surgery, we had it scheduled before i could think to ask about recovery time and pain afterwards, i would just like to know about experiences TIA.

becca
 
I have seen no replies! I am so sorry. I cannot help out with this issue. Perhaps someone can on the boards.
 
Sorry. I would have answered sooner but I haven't been around too much lately.

My son had his first heel cord release when he was 4 years old. He was casted from the knee down..... but it is my understanding there is a different, less evasive procedure that does not require casting.

We saw a dramatic improvement after the release. He was not ambulatory at the time so it is difficult to really say how that would have effected him had he been able to walk independently.

He was able to bear weight. I have photos of him standing with the casts on.

While in the casts he often complained about discomfort, but overall the recovery was easy.

If you provide me with a little more info on what type of procedure your child is having I might be able to give you a little more info.

Hope I helped... even a little.
 
Thank you Mighty Mom,
It helped thanks. The doc just called it heel cord lengthening and said he'll have 3 little incisions with on stitch each and will be in full leg casts for 2 weeks and short leg casts for 2 weeks. My son isn't ambulatory, but we're hoping this will help be able get him to wear his braces so he can use his stander. Did your son take pain meds long after the surgery? I think that's what is worrying me the most is the pain. He's had other surgeries that were really invasive and he didn't have much pain with them but we haven't had any orthopedic surgeries done, it's all been facial (plastic and oral).

becca
 
Thank you Mighty Mom,
It helped thanks. The doc just called it heel cord lengthening and said he'll have 3 little incisions with on stitch each and will be in full leg casts for 2 weeks and short leg casts for 2 weeks. My son isn't ambulatory, but we're hoping this will help be able get him to wear his braces so he can use his stander. Did your son take pain meds long after the surgery? I think that's what is worrying me the most is the pain. He's had other surgeries that were really invasive and he didn't have much pain with them but we haven't had any orthopedic surgeries done, it's all been facial (plastic and oral).

becca

I just read my other post. I didn't make a lot of sense... I was really tired. :)

Pain wasn't really an issue for my son. He was a little uncomfortable initially, but within days he wasn't complaining about pain. He did complain about itching though. I gave him benadryl, especially at night because it helped him sleep and relieved his discomfort.

I'm sorry if this is a stupid question... but are you sure your son is just having a heel cord lengthening done and not hamstrings as well? I'm not an expert... but I thought short leg casts were all they did for heel cord procedures. Again, I could be wrong, but I thought that was generally what happened.

My son had his heel cords done when he was 4 years old. 2 years later he had heel cord, hamstrings and hip adductors done. He was in full leg casts with a rod holding his legs 19 inches apart. He was in these full legs casts for 8 weeks. It was HORRIBLE. The short leg casts were a walk in the park compared to those long leg casts with the bar.

So, my advice... stock up on benadryl. Your son will probably go home on Tylenol3..... but stay away from that unless it's absolutely necessary. Codeine tends to constipate kiddos... and that's not something you want to deal with on top of the casts.

Feel free to PM me if you have any other questions.
 
Yeah he is just having the heel cords done, we just got the all the hospital info in the mail today and all it said was bilateral heel cord lengthening. My son's pt said she had another patient that just it done by the same doc and was in full leg casts too. So apparently it's what this doc does, Thank you for the benadryl tip, i'll get stocked up now, he's had tylenol3 before and it didn't seem to effect him to much, but he takes miralax daily so we may not have problem there. Thank you for the info it's much appreciated

becca
 
Hi, I'm late coming to this, but I had my heel chord release/lengthening 4 years ago. I was still ambulatory at the time, but my contractures were bad. I had them both done at the same time. My incisions are 6-8 inches long, though it sounds like they can do it differently for a small child. (I am 33). I could not bear weight on my casts (knee down) for 4 weeks, then I was given walking boots to wear over my casts for 4-6 more weeks. Then straight to full-time AFOs.

I don't remember the pain being bad at all. Of course, I had given birth a few months prior, so my perspective may be off! But really, having the casts on keeps the ankles very stable while healing, so the pain is manageable. You can't really move it to cause the pain, KWIM?

Good luck to your little guy. I'm sure he'll do well.
 
My son had his surgery yesterday and is doing o.k. he had a hard night getting comfy and the tylenol3 didn't make him sleepy, so mighty mom thanks for the tip on the benadryl it helped a lot.

becca
 
My son had his surgery yesterday and is doing o.k. he had a hard night getting comfy and the tylenol3 didn't make him sleepy, so mighty mom thanks for the tip on the benadryl it helped a lot.

becca


I'm glad the benadryl helped. How is he doing now? I know it can be frustrating..... I hope he's doing okay (all things considered).
 
he's doing wonderful, he's back to himself. He's getting frustrated because he can't move like he's use to, but he's trying to roll over to try to get to where he wants to go, he hasn't had to have any meds since thursday or friday. So he's doing really good :banana: thank you for asking. How's your son doing?

becca
 
I was just wondering...is this because of club feet? or something else? My son has bi-lateral clubfeet and this is the only thing I have heard heel cord lengthening done with. If so, I have heard that age plays a part of healing time.
 
no, his wasn't done for club feet. He has cerebral palsy and his heel cords were so tight that we could stretch and stretch and still not get the results needed. We tried braces too but he just slipped up in them because of the tightness, so this was the last resort. When we would try to stand him to get weight through his legs he would be on his tip toes and stay that way. Oh he's 3 (will be 4 in november) and this is his 8th surgery to date, so he's getting to be a pro at recovery and he is going back to school tomorrow.
becca
 
Glad to hear that he is doing so well!! I hope the lengthening helped! My son had casts a month before he turned 4. I remember him being frustrated with the casts. We used Motrin and ice packs to help. Best wishes!
 
I was wondering if anyone's child has had this done, my son is having this in 2 weeks and from what his therapists and doc told me it's not that big of a surgery, we had it scheduled before i could think to ask about recovery time and pain afterwards, i would just like to know about experiences TIA.

becca

My son is scheduled to have heel cord lengthening May 12th in Chapel Hill. So i know how you feel to be scared of the outcome. I am very scared. Has your son had the surgery yet? Let me know please how it turned out. thank you, Jessica Walker ,,i'm sorry, i just read that he has had the surgery already, has it helped him walk better?
 
My DD is 23 and had hip releases and heel cord lengthening when she was about 6. So, it wasn't recent, but it certainly was memorable.
Pain wasn't really an issue for my son. He was a little uncomfortable initially, but within days he wasn't complaining about pain. He did complain about itching though. I gave him benadryl, especially at night because it helped him sleep and relieved his discomfort.
I was also surprised my DD didn't seem to have a lot of pain.
I don't remember using anything for itching other than we used a cool (no heat) hairdryer down her casts a few times.
My son had his heel cords done when he was 4 years old. 2 years later he had heel cord, hamstrings and hip adductors done. He was in full leg casts with a rod holding his legs 19 inches apart. He was in these full legs casts for 8 weeks. It was HORRIBLE. The short leg casts were a walk in the park compared to those long leg casts with the bar.
I remember that.
DD had the full leg casts with the rod (even though we tried to prevent her from doing it, she figured out that the rod made a handy hand hold to help her sit).
Anyway, after about maybe 4-6 weeks, the rod was cut off close to the casts. 2 full leg casts with a rod seemed like a really hard thing to deal with until we had 2 full leg casts without a rod. The casts were constantly either bumping into each other or one leg would get away - :eek: that was not popular - it pulled on her legs and hurt. So, we had to be very careful once the rod was off.
Then, a few weeks later, the doctor cut the casts down to just below the knee. That was better. We still had the casts hitting, but she was much lighter.
Yeah he is just having the heel cords done, we just got the all the hospital info in the mail today and all it said was bilateral heel cord lengthening. My son's pt said she had another patient that just it done by the same doc and was in full leg casts too. So apparently it's what this doc does, Thank you for the benadryl tip, i'll get stocked up now, he's had tylenol3 before and it didn't seem to effect him to much, but he takes miralax daily so we may not have problem there. Thank you for the info it's much appreciated

becca
I know for broken bones, they usually go one joint above the break for stability. I believe they do the same thing for this kind of surgery sometimes.
no, his wasn't done for club feet. He has cerebral palsy and his heel cords were so tight that we could stretch and stretch and still not get the results needed. We tried braces too but he just slipped up in them because of the tightness, so this was the last resort. When we would try to stand him to get weight through his legs he would be on his tip toes and stay that way. Oh he's 3 (will be 4 in november) and this is his 8th surgery to date, so he's getting to be a pro at recovery and he is going back to school tomorrow.
becca
We had the same thing with DD. She had (ugh, it's late and all I can think of is UFOs - obviously not the correct term) brace things. We would just get them on and get them all strapped, then she would move her leg and they would pop right off.
We were lucky that was the only surgery she has had. She is classified as a mixed spastic quad. She varies between a lot of spastic extensor tone and hypotonicity. Because of that, she actually has very little lost range of motion, a little in her knees and hips. They have wanted to do more surgery on her feet because they are kind of deformed, but she is no longer a functional walker because of other issues (like hypotonicity in part of her trunk that made her more unstable as she grew.) So, they really could not give us good reasons for doing her feet - we had one doctor who said she would not be able to wear shoes by the time she was 12. She's still wearing shoes and walks with a gait trainer, so I'm glad we didn't listen to him.

FORGOT TO MENTION: glad to hear he got thru it and seems to be doing well
 
Hello - I was visiting this section of the boards for the first time in a while and was interested in this thread because our son's gastroc's have also been tightening up and we are hoping to avoid surgery. For now, botox seems to be working.

I realized as I was reading that this thread was started by Becca, Jonah's mother. I know that some posters were wondering how Jonah's progress has been. Those of us on the Wish Trippers thread had gotten to know Jonah and his family through their Wish trip report.

Sadly, Jonah passed away this winter (here's a copy of her post):

pray for us

-------------------------------------------------------------------------

I know I neglected his trip report but the memories are still there. Jonah passed away March 13, 2007. He pulled out his trach in the middle of the night. We are having his visitation on Wednesday and his funeral on thursday. We are having a tough will the realization that he isn't here with us. We are remembering the good times that we had with him and that always brings a smile to our faces. We can't thank Make-A-Wish enough for giving us some of those favorite memories. We can't thank Give Kids the World enough either. Please just remember us.

becca

I'm sorry to have to share sad news, but thought you might want to know.

Alison
 
Oh, my goodness.:sad1:
One of the problems with the 'related threads' search is that it sometimes brings up some very old threads. People seeing them assume that what comes up is recent and post to that thread.
I just noticed the date of the post before mine was recent and didn't notice how old the OP was.

Thank you, twinmum, for adding the sad update. Since the child in the original post had died, I'm going to close this thread.:hug:
 
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