Cerebral Palsy
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Has anyone has multilevel semls?

vickandcamvickandcam Member Posts: 3 Listener
edited April 9 in Cerebral Palsy
Hello there!!! 
This is my first post on this page, so I’d just like to say hello to you all and see if any of you can help me. 
My son is 11 in December and had finally (after 2 years wait) got his SEMLS multilevel apt in 6 weeks. 
Has anyone else been through this? Carers or patients points of views?
how long were you/they on hosp after the op?
how long at home?
how long till casts were taken off?
how long were you in hosp for the second stint?
how hard why’s physio?
how bad was the pain?
do you regret it?
have you seen any improvement?

sorry for all the questions. Just I have no where to turn or ask anyone anything! 

Any advice,info or anything would be great!! Thank you xx

Replies

  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hi @vickandcam
    Great 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  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! 
    Even though I now use a wheelchair fulltime (rebelled against physiotheraoy) I do not regret the surgery.
    It was painful but not unbearable and the amount of physio can be daunting.
    In total I was in and out of hospital for around 18 months. I must add that things have moved on since the early '90s.
    To get a parent's view I'm going to tag @jonblake into our conversation. His son has recently undergone surgery.


    I'm always here for a chat if you need to.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • jonblakejonblake Member Posts: 42 Courageous
    My son Jordi is 11 and had both femurs cut and repositioned in June - would his experience be useful? 
    Best
    Jon

  • vickandcamvickandcam Member Posts: 3 Listener
    Yes please Jon! We are having this done also!! X
  • jonblakejonblake Member Posts: 42 Courageous
    Ok, @vickandcam, will get back tomorrow if I have time, but just to say it's four months since the op now and he's healthy and happy.
  • jonblakejonblake Member Posts: 42 Courageous
    Jordi was operated on June 6 at the University Hospital of Wales; the op took about 4 and a half hours. Needless to say it took a lot out of him! The pain was managed by the usual painkillers and sometimes morphine - he didn't sleep well all the time he was in hospital - 3 weeks - and was only pain-free after a few more weeks at home. He did still enjoy some of his time at UHW though, especially the games room! Of course all cases of CP are different and surgeons may make different choices, but Jordi had titanium rods put down both legs and instead of having casts had a wedge strapped between his legs. This may have meant more pain when being moved but made it easier when he was being transferred in and out of a wheelchair and put into a car.  While at UHW he had physio every day but once home this was mainly down to us, with no more than weekly NHS physio. He tolerated physio ok but of course it involves some discomfort and absolutely has to be stuck to. 

    After a month sleeping downstairs at home we was able to shuffle upstairs on his bum, and now after a four months can move ok in a frame but only just about walk a couple of steps without one. The head surgeon was over-optimistic about his recovery time, his assistant more circumspect.

    The truth is we still don't know how successful the op has been, but x-rays show it was performed as well as it could have been and he is mending satisfactorily. They still haven't decided exactly what further surgery will be necessary: again, every case is different and they have to see how he progresses. However, though we dreaded the op we have no doubts it was necessary - his left leg was pointing in at right angles and if the bones weren't relocated this would never improve.  It was a big test for all of us and needed great dedication from both of us parents, but Jordi is stronger for it mentally as well as physically.  He's done 6 weeks at secondary school now and coped fine, although he's still in a wheelchair most of the time.

    If there's anything else you want to know @vickandcam, just say.
  • jonblakejonblake Member Posts: 42 Courageous
    Just to clarify, the only time the pain really bothered him was when the painkillers wore off, which usually only happened in the night.
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