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Legs op tomorrow - any experiences?

jonblakejonblake Posts: 37Member Courageous
My 11-y-o son Jordi has an op tomorrow to sever and straighten both femurs and shorten the tendons behind both knees.  Wondering if anyone has had a similar op, or is the parent of a child who has?  I was hoping Jordi was going to write about his experience on his blog at www.jordiblake.co.uk but he's gone and written about the World Cup instead!

Replies

  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Hi @jonblake ;
    Good to meet you. I had very similar surgeries when I was 12 ( a long time ago!) at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry. 
    My surgeries were carried out in two separate larger procedures. Bones first and then soft tissue. Like I said it was a long time ago and I'm certain that the procedures now have advanced. My advice to Jordi would be to take your time to heal and keep up with the physiotherapy, even when it's the last thing you want to do! 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Thanks very much Richard.  Jordi had his gait analysis done in Oswestry.  He's getting expert surgery in Cardiff at the UHW, and will also have a separate soft tissue operation. Wondering how successful your ops were?
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Good morning @jonblake ;
    My ops were successful in so far as I was on my feet and walking using a frame. The outcomes, as you will know are dependent on how good your mobility is to start with. I now use a wheelchair but this is because I rebelled against the physiotherapy regime in my teenage years Hence my reference to physiotherapy in my first reply. That said, my posture and mobility are far better than it would have been, had I not had the surgeries.

    Keep me posted!
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Thanks Richard.  Jordi's mobile but very twisted, so hopefully he'll be straightened out. Wonderful boy but rather lazy, but his mum will see to it he sticks to any physio regime!
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Hi @jonblake ;
    If I can give you guys the benefit of my experiences, let me know.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Thanks again Richard. Jordi's op took 5 hrs and he lost a lot of blood, but five days later he's in good shape and the op looks to have been successful.  They didn't do his knees, he's not in casts and can put a little weight on his now straight feet!  Just looking forward to getting him home in a few days so he and his mum can get some proper sleep (I'm mainly at home with his little sis). .
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Hi @jonblake ;
    Thanks for the update!! 
    Things will improve when you are all back in your own environment. Please pass on our best wishes and keep me updated.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Hi Richard - remembering what you said about the physio as it's become apparent that Jordi's professional help will virtually stop if he comes home, so we're having to fight to keep him in hospital as long as possible. Not ideal, but as we all know the NHS is chronically underfunded. How crazy is it that such a major operation may fail because of lack of follow-up?
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Hi @jonblake ;
    Was the surgery performed under the NHS? It was a similar situation with me. I had eight months of therapy in the hospital but when I returned home full time the physiotherapy stopped. I remember my mum having long and confrontational conversations with our G.P., In the end, my Dad paid for sessions.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Hi Richard
    Yes, all NHS. Do you mean you remained in hospital 8 months?  We're hoping it won't be that long!
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    The NHS has an obligation to provide the aftercare and physiotherapy. Yes, I was in the hospital for 8 months.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Please remember that when I underwent the surgeries it was a very long time ago and I was only the third person to have it performed in the U.K. @jonblake, I am certain that things will have progressed. I didn't mean to cause you concern!
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    I'm sure they'll give an estimate of how long he'll need soon, thanks. Gasping for you mainly!
  • lillie253lillie253 Posts: 1Member Listener
    Hi nice to meet you  I had very similar surgery when I was 9 I’m 15 now and I can honestly say it was hard but it’s is worth it as long as he has good motivation and positive energy he will smash it 😁
  • jonblakejonblake Posts: 37Member Courageous
    Thanks Lillie, I've passed on your message. Glad yours worked out. Jordi's just come home. Still very stiff and painful but slowly progressing. X-rays showed the surgeons at UHW got everything spot-on.
  • nicebootsniceboots Posts: 195Member Pioneering
    Hi, I had several surgeries as a child, but the biggest and most successful was when I was 13. They lengthened several muscles including my adductors (inner thigh muscles) hamstrings and both calf muscles. They also de-rotated my left (worse side) hip and pinned it to stop my leg turning inward. I also had the growth plates in my better leg drilled to stop it growing for a bit to even out my leg length difference. I had to spend 6 weeks in hospital, then months of intense physio. The physio was really important (and still is!) the physios and consultant at the hospital really drilled it home to me that the surgery would be a complete waste of time without me putting in the hard work with the rehab. Luckily they did it in a really supportive, but still firm way -picking up on my love of sports to encourage me. Together we set clear goals, like getting back to riding my bike and having a kick about and playing basketball with my friends. They also taught me that physio isn’t just laying on a mat being pulled about! All sorts of things can be physio as long as you’re moving.... I remember doing some shadow boxing with the consultant to ‘work on my balance’. When I got discharged I saw the community physio weekly and had physio with the school nurse everyday. I also got to use the gym in the leisure centre next to the school with my physio instead of pe. I would say the most important things is to keep active and keep up the physio (even when you really don’t want to!) 
  • jonblakejonblake Posts: 37Member Courageous
    Thanks niceboots, that's really helpful. Impressed with your range of activities! Jordi loves sports and if he can play better with straight legs he will certainly be motivated.
  • nicebootsniceboots Posts: 195Member Pioneering
    Thanks! I’m still pretty active I go to the gym as often as I can, normally once a week, sometimes up to 3 times depending on my work schedule or if I’m not going to the football on a Saturday. Another thing that kept me motivated with stretching was watching the teams warm up before matches - they would be doing similar stretches to what I was, so watching my heroes doing that kept me going!
  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Hi @jonblake ;
    How is Jordi? 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Thanks for asking Richard. Jordi started high school today, still in a wheelchair but able to walk with the assistance of a frame and climb stairs. Almost pain-free now.  X-rays show one femur pretty much repaired, the other a bit behind. Doing his physio, hydrotherapy, standing frame, but still too early to say how successful the op's been. He's expected to be walking in a couple of months - two longer than the main consultant said. I'll try to remember to keep you posted - hope things are ok with you.
  • jonblakejonblake Posts: 37Member Courageous
    Getting on for eight months since Jordi's op now and I've just posted this slightly tongue in cheek vid about his progress:

  • Richard_ScopeRichard_Scope Posts: 1,546Administrator Scope community team
    Hi @jonblake and Jordi
    :D :D :D :D
    Love the video! Also, fantastic to see the progress too. How is everything?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • jonblakejonblake Posts: 37Member Courageous
    Thanks Richard. Jordi's done really well at high school, was in the school. musical in his wheelchair and is now just taking crutches.  He;'s suddenly become able to swim after years of trying and is also riding horses!  As you'll see in the vid his movement is still quite limited so we don't know if he'll need more intervention to get him walking straight.
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