Cerebral Palsy
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Hip Replacement

PinkpoppyPinkpoppy Member Posts: 18 Connected
edited April 9 in Cerebral Palsy
Hi
I was diagnosed with coxa valga back in January 2020, and have finally been given a date for my first replacement of 25 February, but I'm really anxious. Not about the surgery itself so much as the aftercare and being told that hip replacement surgery hasn't been performed on anyone in North Devon or even most of Devon. Is it really such a rare procedure? Consequently, there is a huge amount of uncertainty as to the outcome, although they have assured me that there should be a reduction in pain. I feel I have no alternative but to go ahead as the condition is deteriorating quite drastically, having been fully mobile, using a walker, to only being able to manage a couple of steps and using a power chair all the time now.

I'm also very concerned that the support being suggested for my recovery is woefully inadequate.  I live alone and have no family nearby, with a private carer coming in 3 hours a week. The orthopaedic OT has suggested a care package of 45 minutes morning and evening, which just doesn't seem enough bearing in mind that she's intimated that I may not be able to get myself out of bed wfhen I come home, a prospect which really scared me. I just don't see how I'm going to cope.

So I'd be grateful for any advice or insights you can offer as I'm really stressed about the situation. 
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Replies

  • woodbinewoodbine Community Co-Production Group Posts: 4,484 Disability Gamechanger
    edited February 11
    I can't understand why they would say hip replacements haven't been done in Devon it's a very common operation, friends of ours work in the theatre of an NHS hospital that does little else other than Hip replacements. My mother in law had both hers done over a period of time the first in her late 60's she was anything but bed bound when she came home although it was a few weeks before she could really go out.
    Is it possible they might send you for respite care before you go home?
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • PinkpoppyPinkpoppy Member Posts: 18 Connected
    Sorry I didn't make myself clear.  I meant hip replacements on people with cerebral palsy.
  • woodbinewoodbine Community Co-Production Group Posts: 4,484 Disability Gamechanger
    @Pinkpoppy right I understand now others will be better qualified to help than I am
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    edited February 12
    Hi @Pinkpoppy
    Thanks for posting. I have to say that I agree with @woodbine, hip replacements are not rare procedures and not rare on people living with CP anymore. However, I would say that surgical intervention for someone with an underlying neurological condition does offer additional complications and that the medical and rehab team need to recognise that you may not recover as quickly or respond in the same way as other patients without CP.
    I can really understand your concerns about the aftercare and support post-surgery. It is vital that you, the OT your care team and consultant meet and discuss your post-surgery situation. Has this been suggested?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • PinkpoppyPinkpoppy Member Posts: 18 Connected
    edited February 13
    Hello @Richard_Scope(sorry, I can't seem to work out how to do the name tag thing everyone else does!)

    Thank you for your very helpful reply. I must admit I was both surprised and alarmed to find that hip replacements for people with cerebral palsy in my area haven't been done before. But I've had the same response from several practitioners so I presume it must be correct. Everyone does seem to recognise that CP will create complications with the outcome and recovery procedures, and the orthopaedic OT has prescribed care and physio for me, which wouldn't usually be in place for hip surgery, and she has agreed that my hospital stay will be longer than the usual one or two nights. But no meeting has been suggested between the various parties, as you advocate, and it's probably too late now. Moreover, the OT I've been liaising with hasn't returned my telephone calls and is retiring at the end of next week, before my surgery takes place, and I have no idea who is replacing her. So all in all I feel as though I've been left high and dry, and a bit of a guinea pig. I'm hoping that the team actually in the hospital will be a bit more on the ball and my neuro physio, who is excellent, has said she will do everything she can to fight my corner.

    Any advice, or comfort, would be very gratefully received! Are you able to tell me me if CP hip replacements generally have good outcomes nowadays? I'm reasonably fit and healthy and up until 6 months ago was fully mobile, so I'm hoping that these factors will work in my favour.

    Many thanks 
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hi @Pinkpoppy
    Hip replacements on people with CP generally have good outcomes as long as you can put in the work post-surgery. The fact that you have been mobile will absolutely work in your favour. The one piece of advice I will give is patience. People I have spoken to have gotten so frustrated that they are not able to be as mobile as they would like straight after the surgery. Take your time and do not get disheartened if recovery seems slower than you would like. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • PinkpoppyPinkpoppy Member Posts: 18 Connected
    Thank you so much, Richard. I can't tell you how good it is to hear something positive. Like most people with CP, I'm not afraid of hard work, so as long as I get appropriate support,  I have some potential for a good outcome.  Thank you for giving me hope!
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