hamstring lengthening surgery??

[disneyobessed]

My 7 year old son has cerebreal palsy and his having the hamstring and hip adducotor lengthening surgery this fall.. Has anyone else had a child that has gone through this?? If so what can I expect??

 

[Mason7AK]

Hi, My six year old daughter had this surgery last year. They did her abductors, hamstrings and heel cords at the same time. She went for day surgery, but they ended up keeping her overnight, just to make sure she was tolerating her tube feeds and her bowels were okay before she went home. She was on morphine right after surgery, but did not need it past the first two doses. They switched her to regular tylenol by the evening and she went home the next morning. She had very little pain or discomfort (and she definitely lets us know when she is in pain!).
She was put in a modified spica cast (went from her ankles to her thighs and had a bar in between), and wore that for three weeks. Then they cut the top part off and she wore the cast from her ankle to just below her knee for another two weeks.
The one thing we did, recommended by our occupational therapist, was to buy some vitamin E oil and massage her "scars" once the bandages came off. It really helped to minimize the scarring and seemed to soothe her after a physical therapy session and in the evenings.
My dd has been loose and much more comfortable since her procedure. She used to "scissor" quite a bit, no matter how much we stretched her daily. Now her legs are relaxed and her favorite position is more of a "frog", which was impossible for her before the lengthening. It is much easier to change her diaper now also, which is an added benefit.
Good luck with your son's surgery!
Angela

 

[disneyobessed]

Hi, My six year old daughter had this surgery last year. They did her abductors, hamstrings and heel cords at the same time. She went for day surgery, but they ended up keeping her overnight, just to make sure she was tolerating her tube feeds and her bowels were okay before she went home. She was on morphine right after surgery, but did not need it past the first two doses. They switched her to regular tylenol by the evening and she went home the next morning. She had very little pain or discomfort (and she definitely lets us know when she is in pain!).
She was put in a modified spica cast (went from her ankles to her thighs and had a bar in between), and wore that for three weeks. Then they cut the top part off and she wore the cast from her ankle to just below her knee for another two weeks.
The one thing we did, recommended by our occupational therapist, was to buy some vitamin E oil and massage her "scars" once the bandages came off. It really helped to minimize the scarring and seemed to soothe her after a physical therapy session and in the evenings.
My dd has been loose and much more comfortable since her procedure. She used to "scissor" quite a bit, no matter how much we stretched her daily. Now her legs are relaxed and her favorite position is more of a "frog", which was impossible for her before the lengthening. It is much easier to change her diaper now also, which is an added benefit.
Good luck with your son's surgery!
Angela

oh my gosh... thank you so much for the reassurance.. we were told my son will spend 2 nghts in the hosptial first night in ICU... then the next night.. in a regular room. he will also have casts which will be from the ankle up and the bar... 4-6 weeks.. how long did it take for her to recover??

 

[Mason7AK]

Hi again, It didn't take her long to recover at all once the casts came off. She was a little sore and hesitant to move her legs at first, and the area around the incisions was a little lumpy and swollen when the casts came off. The Vitamin E massages helped with that tremendously! Once she figured out it didn't hurt to move those legs and that she wasn't as tight as before, she was so happy and moved her legs around much much more than she ever did before. I think you will be pleased with the results.
My DD had to have hip surgery when she was two because of her spasticity and the recovery time and pain from that was just awful!! The lengthening surgery was a much better alternative with a much better outcome! I wish it had been recommended to us in the first place and she hadn't had to have the hip surgery when she was 2 - but we were not offered that option - now we have a much better orthopedic surgeon, who goes for the least invasive procedure possible. The lengthening procedure kept us from having another hip surgery. We are almost 18 months since she had the lengthening surgery and so far no sign of her tightening back up.
Angela

 

[disneyobessed]

wow that is great.. thanks so much..

 

[MightyMom]

While it seems like a previous poster had a pretty smooth procedure and recovery.... our story is quite different.

My son's surgery was 2 years ago. He was in a cast from the tip of his toes to his hip with the 19 inch bar across.

The procedure itself went well..... he ended up staying in the hospital for 4 days. We came home and he continued to get even sicker.... so he was put back in the hospital. While it had nothing to do with the actual procedure, my son's liver was enlarged due to a rare side effect from the meds he was put on after the procedure.

He was in the casts for 8 very long weeks. He cried every night because the itching was so bad. Keep in mind this is a child who doesn't complain easily. I finally got a clue after the first few days behing home (I felt like a terrible mom for not thinking of this sooner) and gave him benadryl at night. It worked like a charm!

My son was already potty trained.... so that was REALLY difficult for us. He REFUSED to go in a diaper or pullup.

I was really very careful not to the the casts wet because I didn't want them to start stinking. So I bathed him in my kitchen. I layed him on my counter with his head over the sink to wash his hair.

The doctor ordered a wheelchair for him. At first I told them we didn't need it because he had his own..... but this one had leg lifts on it to keep his legs elevated. It was nice to have around the house and when we went.

My son's toes were always cold.... so I bought some adult size thick socks and put them over the casts. But if your child's casts run from the ankle up... sounds like that won't be a problem for you.

Sleeping was interesting. There are very few comfortable positions to put your child in.... we really used our imagination on different ways to prop up his legs.

Although we were well informed and had spoken to others who had gone through the same thing.... we really were overwhelmed initially. After the first week we got into a good rythm.

My son could walk with assistance prior to the procedure...... and for six months after the procedure he was so weak he couldn't even bare weight. I regretted doing it. The therapists and doctors tried to reassure me.... but until he was able to stand in his walker again I felt certain we shouldn't have done it. In hindsight I think it was a great thing we did... and I don't regret it now.

Best of luck to you.

 

[disneyobessed]

While it seems like a previous poster had a pretty smooth procedure and recovery.... our story is quite different.

My son's surgery was 2 years ago. He was in a cast from the tip of his toes to his hip with the 19 inch bar across.

The procedure itself went well..... he ended up staying in the hospital for 4 days. We came home and he continued to get even sicker.... so he was put back in the hospital. While it had nothing to do with the actual procedure, my son's liver was enlarged due to a rare side effect from the meds he was put on after the procedure.

He was in the casts for 8 very long weeks. He cried every night because the itching was so bad. Keep in mind this is a child who doesn't complain easily. I finally got a clue after the first few days behing home (I felt like a terrible mom for not thinking of this sooner) and gave him benadryl at night. It worked like a charm!

My son was already potty trained.... so that was REALLY difficult for us. He REFUSED to go in a diaper or pullup.

I was really very careful not to the the casts wet because I didn't want them to start stinking. So I bathed him in my kitchen. I layed him on my counter with his head over the sink to wash his hair.

The doctor ordered a wheelchair for him. At first I told them we didn't need it because he had his own..... but this one had leg lifts on it to keep his legs elevated. It was nice to have around the house and when we went.

My son's toes were always cold.... so I bought some adult size thick socks and put them over the casts. But if your child's casts run from the ankle up... sounds like that won't be a problem for you.

Sleeping was interesting. There are very few comfortable positions to put your child in.... we really used our imagination on different ways to prop up his legs.

Although we were well informed and had spoken to others who had gone through the same thing.... we really were overwhelmed initially. After the first week we got into a good rythm.

My son could walk with assistance prior to the procedure...... and for six months after the procedure he was so weak he couldn't even bare weight. I regretted doing it. The therapists and doctors tried to reassure me.... but until he was able to stand in his walker again I felt certain we shouldn't have done it. In hindsight I think it was a great thing we did... and I don't regret it now.

Best of luck to you.

Thanks so much for your insight.. we were told it takes about 6months to recover.. My son is also potty trained so this isnt going to be easy.. was your son able to use the toilet at all?? How old was he when he had it done? How did he deal with school?? My son has a 1/1 aid so that will be good. He is getting it done on Nov 13. They were going to do the deroational surgery on his femur bones where they actually go in and break the bone to twist it.. but we were deal against it along with his PT.. she didnt feel the need for it unless his hips xrays came back showing he needed it which they didnt.. How soon after the surgery did your son start PT??

 

[MightyMom]

Thanks so much for your insight.. we were told it takes about 6months to recover.. My son is also potty trained so this isnt going to be easy.. was your son able to use the toilet at all?? How old was he when he had it done? How did he deal with school?? My son has a 1/1 aid so that will be good. He is getting it done on Nov 13. They were going to do the deroational surgery on his femur bones where they actually go in and break the bone to twist it.. but we were deal against it along with his PT.. she didnt feel the need for it unless his hips xrays came back showing he needed it which they didnt.. How soon after the surgery did your son start PT??

My son was 6 years old....he's now 8.

Okay... I'm gonna try to answer all your questions.

Yes, my son was able to use the toilet. Initially we had him pee in a plastic urinal that the hospital gave us. It was much easier than trying to hold him up next to the toilet when he was very weak. If he had to have a bm we sat him on the toilet and propped his legs up on his shower bench. Eventually as he started to recover (even while he was still casted) we were able to help him stand next to the toilet to pee. He was very glad not to use the urinal.

I was homeschooling my son at the time of the procedure. BUT... in 2003 he had a heel cord lengthening procedure done and he was in the short casts. . (The short casts are NO comparison to the long casts) He was in school at the time for 1/2 days. It was pretty easy because he was in a self contained unit. He is now mainstreamed. I think having a 1/1 for your son will work out perfectly. I don't think you'll have to worry about school too much.... it will be a nice distraction for him during the day.

I'm glad he's having his procedure in fall/winter. He won't be as hot and itching won't be too much of a factor.

Here's another tip. We moved my son's twin size mattress to the floor in our bedroom because we had to flip him around several times a night. I pushed the bed up against the wall and used the wall as a prop to hold up his legs if he wanted to lay on his side.

My son started PT really soon after his procedure... probably 2 weeks after he was released from the hospital. They did a lot of ab work and upper body work.

Feel free to ask any questions. I have some photos of my son in the casts.... if it helps to give you an idea of what it will look like I will be happy to send them.

 

[disneyobessed]

My son was 6 years old....he's now 8.

Okay... I'm gonna try to answer all your questions.

Yes, my son was able to use the toilet. Initially we had him pee in a plastic urinal that the hospital gave us. It was much easier than trying to hold him up next to the toilet when he was very weak. If he had to have a bm we sat him on the toilet and propped his legs up on his shower bench. Eventually as he started to recover (even while he was still casted) we were able to help him stand next to the toilet to pee. He was very glad not to use the urinal.

I was homeschooling my son at the time of the procedure. BUT... in 2003 he had a heel cord lengthening procedure done and he was in the short casts. . (The short casts are NO comparison to the long casts) He was in school at the time for 1/2 days. It was pretty easy because he was in a self contained unit. He is now mainstreamed. I think having a 1/1 for your son will work out perfectly. I don't think you'll have to worry about school too much.... it will be a nice distraction for him during the day.

I'm glad he's having his procedure in fall/winter. He won't be as hot and itching won't be too much of a factor.

Here's another tip. We moved my son's twin size mattress to the floor in our bedroom because we had to flip him around several times a night. I pushed the bed up against the wall and used the wall as a prop to hold up his legs if he wanted to lay on his side.

My son started PT really soon after his procedure... probably 2 weeks after he was released from the hospital. They did a lot of ab work and upper body work.

Feel free to ask any questions. I have some photos of my son in the casts.... if it helps to give you an idea of what it will look like I will be happy to send them.

yes pictures would be great.. i could show justin what to expect.. you can email them to me at karastockhaus@hotmail.com he will be 8 in january so he is about the same age as your son.

my son sleeps on his side so thats a great idea about being against the wall. We planned on moving his matress downstairs to elimate carrying him.. he is sharing a room with his6 year old brother right now in bunkbeds.. and they dont want to be seperated.. until then.. he will be upstairs.. Did you son have the heel chords done b/c he toe walked? Justin has AFO'snow and without them he walks on his toes ...

 

[MightyMom]

yes pictures would be great.. i could show justin what to expect.. you can email them to me at karastockhaus@hotmail.com he will be 8 in january so he is about the same age as your son.

my son sleeps on his side so thats a great idea about being against the wall. We planned on moving his matress downstairs to elimate carrying him.. he is sharing a room with his6 year old brother right now in bunkbeds.. and they dont want to be seperated.. until then.. he will be upstairs.. Did you son have the heel chords done b/c he toe walked? Justin has AFO'snow and without them he walks on his toes ...

Yup. Jordan did toe walk... and that's why we did the heel cords too. Infact.... his very first procedure was the heel cords..... but the doc didn't do enough so when we did the adductors and hamstrings he did a bit more on the heel cords. Since your son is not having the heel cord done... that is probably why it's only down to his ankles and not all the way to his toes.

I"m gonna dig up the photos and send them to you soon. Also.... Jordan said he woudn't mind being pen pals with Justin. Maybe he can ease any fears Justin might have about the procedure.

I'll email you soon.

Trisha

 

[disneyobessed]

pen pals would be great... justin was in the hosptial for an eye infection in april.. and all the dr's loved him. he is a huge red sox fan and he would tell them the scores of the games everday.. he will be at the same hosptial in on the pediatric floor again so that has eased some of the fear.. I will tell justin about jordan tonight.. I saw you that will be going to disney in june of 08. we were going to go in june but our school year runs late next year.. (if we use all our snow days) so we have decided to go in august.. too bad.. the boys could have met.

 

[lovedcookie]

I too have cerebral palsy and have had various muscles in my legs lengthened including my hamstrings and most of what previous posters have mentioned in addition to a rectus-femorus muscle transfer and rotation of all the bones in my left leg. Anyway, my recovery from these surgeries (there were 2, three weeks apart) went quite well. At the time of my surgeries I was 16. I was fortunate to have only short-leg casts on both legs (below my knee to my toes, no bar between). I used a CPM (continous passive motion machine) to keep my knees in a constant bending-straightening motion. I began physical therapy about 48 hours after having my muscles lengthened (the first surgery was only on the bones in my left leg/foot). I stayed in the hospital 10 days I was told I'd stay 7, but opted for 10 so I could gain a bit more confidence in the skills I needed to be ok at home. As far as pain, I was on an epidural for the first 36-48 hours after both surgeries. Within 5 days, I only needed over-the-counter pain meds. I continued out-patient physical therapy for about a year and a half following my surgeries. Its been almost four years since the two surgeries and I'm quite pleasantly surprised with the results. I've only experienced mild tightening and would do everything again in a heartbeat. Hope this helps! If you have any questions feel free to ask.

 

[disneyobessed]

I too have cerebral palsy and have had various muscles in my legs lengthened including my hamstrings and most of what previous posters have mentioned in addition to a rectus-femorus muscle transfer and rotation of all the bones in my left leg. Anyway, my recovery from these surgeries (there were 2, three weeks apart) went quite well. At the time of my surgeries I was 16. I was fortunate to have only short-leg casts on both legs (below my knee to my toes, no bar between). I used a CPM (continous passive motion machine) to keep my knees in a constant bending-straightening motion. I began physical therapy about 48 hours after having my muscles lengthened (the first surgery was only on the bones in my left leg/foot). I stayed in the hospital 10 days I was told I'd stay 7, but opted for 10 so I could gain a bit more confidence in the skills I needed to be ok at home. As far as pain, I was on an epidural for the first 36-48 hours after both surgeries. Within 5 days, I only needed over-the-counter pain meds. I continued out-patient physical therapy for about a year and a half following my surgeries. Its been almost four years since the two surgeries and I'm quite pleasantly surprised with the results. I've only experienced mild tightening and would do everything again in a heartbeat. Hope this helps! If you have any questions feel free to ask.

thank you so much for your input..its very helpful to hear of the different experiences..