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Thread: surgery-muscle lengthening == c/'p from archives, posted by 'grace'

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    Default surgery-muscle lengthening == c/'p from archives, posted by 'grace'

    I'm going to try to c/p a thread from the archives. (HOpe you don't mind Lucinda...and I hope it works.)
    Quote Originally Posted by Grace
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    When this site was so very busy, there was a lot of talk about leg lengthening surgeries, pros and cons. Officially, Matt was considered so mild that they never expected he would even need AFOs yet he has had them, botox, serial casting and now, talk of surgery. I admit it has thrown me off as I never expected those words.Any insight? Things to consider? it is a ways off yet but once the words are spoken, it usually happens with time.Thanks.p.s. Matt is almost 13 now. __________________Lucindamom to four boys who keep things interesting...
    I guess I should try to c/p the replies too. ?

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    Quote Originally Posted by Donna Thompson
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    HI Lucinda! Nicholas had the lengthening surgery when he was about 7 years old, but he is much more severe than Matt. I do know kids with mild CP who had AFO's but who never had surgery. Anyway, if he does have it, he's likely to do very well, but there's a lot of therapy needed afterwards because the higher tone often is what helps kids stand. When the tone is lessened a lot in the surgery, it is like they need to learn to walk again in a different way. Of course, Nick never walked, but it was an effort to keep his hip from dislocating (didnt work). Good luck and my experience just from watching lots of kiddos is that the milder ones come through the surgeries much, much better. Sending very good karma for good decisions and good outcomes. xoxDonna __________________Donna, Mum to Natalie (18), ablebodied, beautiful, kind and high strung and Nicholas(22), severe spastic CP, non-verbal, tube fed, multiple surgeries, chronic pain, palliative, happy kid except when Liverpool football club is losing!Check out my blog: http:/www.donnathomson.blogspot.com
    Quote Originally Posted by Paul from Australia
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    Dear Lucinda.I am not sure I can advise much.The only operation Grant had to lessen the spasming of his legs, which is much different, was a nerve block in the legs when he was quite young. This was the alcohol block. It actually failed Surgery is certainly a big step. There are positive and negatives to such an operation. I am sure God will direct you correctly when the time comes.To be honest Lucinda Alison and I don't like AFO's one bit, but as you know we are very prejudiced in those areas.May God bring you peace as you move forward with young Matt.Seeya,Paul, Alison and Grant the champ. __________________Grant's story in pictures and music. A must see http://www.youtube.com/user/paulcopelandSeeya there
    Quote Originally Posted by Grace
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    thanks for your words. Matt has not worn afos in, well, nearly two years. they haven`t fit for one year and his use before that was less than optimal. he doesn`t need them to walk, just to help with positioning to help with the tone issues. the proposed new afos are a different design, less inhibiting. but he can`t get them unless we can get his foot to zero degrees with botox and serial casting which is highly unlikely given his lack of response in the past and the fact his starting point is neg fifteen degrees and botox doesn`t get more than five degrees usually. hence the comments that he may be headed for surgery. well, in time, but i prefer to walk through this with my bt family.hugs to you all. __________________Lucindamom to four boys who keep things interesting...
    Quote Originally Posted by funnylegs4
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    Hi, I had tendon lengthening. I also had to relearn how to walk. It was a drag but I did it. Another reason that people with CP have to relearn how to walk is because our bodies don't know how to function without the constant CP signal(sometimes called "the bully") there controlling it so when something is changed through surgery or other means of loosening our brains and bodies say "Hey...what in the hell?!" and it takes time to re-adjust. Surgery is also painful. I can't tell you whether or not to do the surgery but that is my experience. One thing to consider is the fact that he is a teenager and relearning to walk will cut into his social life which will probably make him unhappy. If you do decide to do surgery you might want to look into a new type of leg surgery done with endoscopy which results in a shorter recovery time,less pain, and less annoying scare tissue. I remember reading an article about endoscopy being used on kids with CP for tendon lengthening with a good success rate.
    Quote Originally Posted by Momster
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    Hi Lucinda - The thing that worries me is it doesn't seem like Matt is a particularly compliant patient (Benj is a great patient, as long as it has nothing to do with his arm.....). And at 13, it may be a while before he is willing to see the benefit of cooperating with therapies. I know that there is pretty intensive PT after surgery and I would guess there will be an expectation of him wearing AFOs. Our doctor has advised us to wait because Benj isn't very good at follow through with stretching, PT and the use of orthopedic devices (to which he refers as the instrument of torture). If Matt's going to have an operation, you want to make sure that it's successful, and that might mean waiting.Good luck,momster __________________Momster, mom to 2 boys: one of whom has CP, NLD, and anxiety disorder and a few other letters following his name; and married 22 years to a wonderful guy
    (I omitted the side conversation about HBOT for now, but it is there in the archives if you'd like to go read the comments there)

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    so, now I can comment Are you still processing this Lucinda?My son has mild tone issues and toe-walked, partly due to dynamic tone problems and I guess also the sensory integration issues. Anyway, his heelcords rather abruptly shortened around 8 yrs of age and rather quickly became a significant factor for his mobility. He had worn AFO's from an early age for severe pronation (go figure) then they were discontinued. Eventually he wore the Cascade DAFO nighttime splints just exactly like those in the link provided in a reply to your AFO question. I liked those, at least in concept: good for him, exhausting for me cuz of the need to be up in the night to deal with them. ( I guess that's cuz we were finally getting our first rest in 10 years and I rather liked it lol) Anyway, though we gave it a try it was unsuccessful and he ended up having tendon lengthenings done. He was 12 1/2--about the same age as your son. When we saw the orthosurgeon hab person he stated that those night splints had been wasted effort because they were not long enough to do the job; he needed ones that came up higher on his legs. Another reply mentioned the need to be cautious at night with them...they are more risky to move around in because of the slippery bottoms and the rigidity. Very clunky. I think they reluctantly attached a non-slip surface to the soles cuz i couldn't guarantee Donovan wouldn't get up without my knowing it. They kept repeating that the splints are not meant for walking in. WEll, yeah but.... ( He handled the slippery bottoms okay anyway --but not worth the risk.)The surgery: we were SO pleased with the outcome. outpatient, one small incision right on the heelcord, no weightbearing the first week, then casts for 6 more wks (for us) and ROM p.t. I think we did p.t. for 6 months, if I remember right. We had such great results...the surgeon got it just right. At first I was concerned cuz he seemed overcorrected. Hamstrings are tightening up some again but the heelcords seem good-to-go. He is 6 yrs post-op now. We got to be not so good at doing all the ROM. (I remember when he was little and we did ALLLL the various therapies and modifications etc so faithfully. it sure has gotten a lot harder to follow through now. ) I guess that contributed to the need for surgery in the first place. so: my two cents worth, I would suggest convincing him it's worthwhile to work hard at ROM stretches now. might delay or avoid the surgery...and convince him that if he does have the surgery done it's important to follow through with the p.t. and it will be worth it cuz then he can get about and play so much more and with so much less work. Just gotta get through that work of learning first.

    ~\o/~ Only by His Grace ~\o/~

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    http://www.dafo.com/products/dafo-9/ you mentioned he didn't tolerate the casting well with the botox. serial casting? was it hard for him just to be casted or was it the stretch factor?you asked a question too, which might be a moot point now: should you push AFO's or stretching? I think both, imho
    Last edited by Mother's Heart; 08-17-2011 at 07:01 PM. Reason: goofy url

  5. #5
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    Default I had to wear a cast for 6 weeks after my surgery.

    Hello again, Glad you restarted this thread. On the subject of casts: After my tendon stretching behind my knees I had to wear an A frame cast for 6 weeks which was very annoying because I was stuck in a splits-like position and I could hardly go anywhere. I was stuck in the house watching movies non-stop for pretty much the whole time in the cast. Then when they took the cast off and I went to PT the PT said that my muscles had become somewhat wasted and the muscles that weren't wasted had gotten so used to being in the A-Frame position that when I walked my legs "winged out" and I used my hips for everything,limiting my mobility(i.e ability to turn in a small circle, go backwards, etc)so I had to spend years and years getting my lower body into a better alignment. Steer away from A-frame casts.
    Though again this is only my experience.

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    fortunately, if he only has the heelcords lengthened an A-frame won't be necessary. But then, sometimes they also do the hamstrings which would take the more extensive casting. I'm sorry you've had to deal with that misery funnylegs4. :(

    ~\o/~ Only by His Grace ~\o/~

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    Quote Originally Posted by Mother's Heart View Post
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    fortunately, if he only has the heelcords lengthened an A-frame won't be necessary. But then, sometimes they also do the hamstrings which would take the more extensive casting. I'm sorry you've had to deal with that misery funnylegs4. :(
    Thanks. It was hard but I think it made me stronger as a person. I really hope he won't need an A-frame cast! But if he does hopefully he won't have it for as long as I did. The PT said it was the length of time in the cast that caused most of the problems because being stuck in one position for a long time is bad for people with CP. btw if he just has his heels done he will be able to walk sooner.

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