Cerebral Palsy
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Distal Femoral Extension Osteotomy & Patellar Tendon Advancement

JaimeukJaimeuk Member Posts: 3 Listener
edited June 2019 in Cerebral Palsy
Hello, I am new to the website and chat, I am trying to find out a bit more information on a procedure that my 13 year old son is going to have. He has Spastic Diplegic Cerebral Palsy and is due to have a Distal Femoral Extension Osteotomy with Patellar Tendon Advancement. Have any of your children had this procedure, how long is recovery? is your child able to walk / stand more after the operation than before? Do they have reduced pain?
Many thanks,
Jaime

Replies

  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hi @Jaimeuk
    Good to meet you and welcome to our community. I live with quadriplegic CP and had Distal Femoral Extension Osteotomy with Patellar Tendon Advancement done as part of a group of surgeries in the early '90s. From my point of view, it helped me to stand and walk (with a frame) with much less discomfort. From a parental point of view, I'm going to tag @jonblake into the conversation. His son has recently undergone surgeries and can give that perspective.

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • JaimeukJaimeuk Member Posts: 3 Listener
    Hi Richard, thank you so much for replying to my message, it is lovely to virtually meet you, it is lovely and reassuring to hear that the operation has helped your mobility and reduced pain. I know that the condition is multi layered and sometimes one pain is replaced with another. I am only speaking from a parents point of view and the conversations that I have with my son. I really do appreciate your reply, so thank you 
  • jonblakejonblake Member Posts: 42 Courageous
    Hi @Jaimeuk this is Jon's partner writing - our son (12, also diplegic) had both femurs cut and reset a year ago to correct the in-turning of his legs which was getting progressively worse, but of course every child with CP is different and your son's op is not quite the same. Also, Jordi's condition did not generally cause him pain. He was already quite mobile before the operation (he did use a walker for school but not outside of it and could run and ride a scooter for short distances, for example). It was a question of doing work to prevent the mobility from ultimately being reduced, rather than intending to improve it by much if you see what I mean. With regards to the surgery, he was in hospital for longer than anticipated - nearly three weeks as opposed to a few days, and the surgeon was also too optimistic about the overall recovery time.The first six or seven weeks were quite tough, I won't lie! It is a year on from the operation and while he is still not able to walk as far as he could before yet, it has markedly corrected the inward rotation which was the point. He has been left with more a crouched gait than previously because of being in a wheelchair for such a time, which means there is more pressure on his thigh muscles when he walks. We are doing physio to help correct this and it is possible he will need further tendon or muscle surgery at some stage (this was always given as a possibility before the first operation).However, there is no question that he needed to have the operation done and he is improving all the time, just on a longer time-scale than we had anticipated. It has been in his best interests in the long term.
  • JaimeukJaimeuk Member Posts: 3 Listener
    edited June 2019
    Hi there @jonblake partner, thank you so much for replying to me so honestly. Sounds like Jordi is doing really well, you must be very proud of him. It is a lot to deal with at a young age, but all sounds very positive with the progress he is making. 
    Would you mind me asking if Jordi had to wear full leg casts after the operation and for how long? If so, how did he / you cope with that?
    Thanks again for taking the time to chat with me.
    Jaime 
  • jonblakejonblake Member Posts: 42 Courageous
    Hi @Jaimeuk - Jon this time.  They chose not to put him in casts and instead use a wedge strapped between his legs to keep them in position. This made things easier with getting him about, but as your son's op is different you'd have to ask if this is an option.
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