Hi, my name is claire29! Any adults with CP who have had a knee replacement? — Scope | Disability forum
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Hi, my name is claire29! Any adults with CP who have had a knee replacement?

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claire29
claire29 Community member Posts: 6 Listener
edited October 2021 in Cerebral palsy
I was looking for some experience of any adults with CP who have had a knee replacement. It’s something I’m going to need, so wanted to know how anybody got on and how was the recovery. ?
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @clare29

    Welcome to the community, it's lovely to see you join us.

    I hope you are able to hear from others who have experience here. When you say you are going to need it, do you mean you just think you will in the future or are you already planning for it with your GP / specialist?
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  • claire29
    claire29 Community member Posts: 6 Listener
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    It’s been suggested due to severe osteoarthritis, and I’m a bit nervous about recovery time. And if it’s the right option 
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
    edited October 2021
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    Hi @claire29
    I haven't had any replacements myself but I do know a few people that have had hip replacements.

    The key things are:
    • Make sure the consultant is fully aware of your CP
    • Be honest about how your CP affects you (none of us are good at this)
    • Seek assurances that physiotherapy is in place for the post-op period
    • Make sure it's understood that your recovery may take a little longer due to CP
    • What support will you need/have at home e.g moving your bed down stairs
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  • claire29
    claire29 Community member Posts: 6 Listener
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    That’s really good advice, I do have a stairlift but might struggle with it post op.  I had a lot of surgery when i was younger. It gets more complicated when your an adult, Will have to rally the family ?
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  • Reg
    Reg Community member Posts: 109 Pioneering
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    Hello 

    I have mild CP and hip dysplasia with arthritis in the hips and knees . I saw two hip surgeons who said they could replace my hips but they would not recommend it because of the increased risk of sub luxing  after surgery with CP and the risk of needing replacements again within a few years because of my gait. Apparently the new  joints wear out quicker if you have poor gait.

    I moved to a bungalow instead but I have heard of others who have had replacements and been fine . Just try to find the right surgeon as mine said many would replace mine but I was the one who would have to live with the after affects of surgery.

    It may come down to your quality of life now - I was warned I may not be able to walk if I had surgery to replace them so for me I would rather manage on crutches for now. 

    Please do not let me put you off as you may be totally different if you have better joint formation or muscle control but it is as well to investigate your options 


    Reg

    I am a Scope volunteer.
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  • claire29
    claire29 Community member Posts: 6 Listener
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    Thanks Reg, sorry your still having to struggle with pain, but it really feels like a gamble to have surgery as you say your left with the consequences if it doesn’t go well. For now I’m managing with a steroid injection, it does help for short periods of time. Think I might have to bite the bullet and go for it, it’s really restricting what little mobility I have. 
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  • Matildacat
    Matildacat Community member Posts: 18 Connected
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    Hi Claire,

    I had a knee replacement two years ago as my cartridge in my 'good' leg had worn away.

    I told my GP, surgeon and physio that I had mild CP. It made no difference and I was never offered any additional support.

     My advice is if you really need one talk to your GP and make him/her is aware of your condition and keep telling them. I don't think some of the medical profession are aware of the extra support people with CP need.

    I had to have a knee replacement as I could hardly walk before. I can walk more better now. Still get stiffness but I can cope with that.

    Good Luck with whatever you decide.

    Matilda Cat


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  • claire29
    claire29 Community member Posts: 6 Listener
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    Thanks for replying , I am worried about the recovery and if it will work, how long after surgery were you able to stand and move around. Good your no longer in so much pain.
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  • Matildacat
    Matildacat Community member Posts: 18 Connected
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    Hi there,

    I was standing the next day after my surgery and I used a walking frame instead of crutches. I was walking around the house  slowly after a couple of days. I had a handrail fitted so if needed I could go up and down stairs. I had about six weeks recovery before I felt confident to go out on my own. I really don't think I would be able to walk  now without the knee replacement but it really is a personal choice.

    Best wishes and please feel free to ask any more questions.

    Matilda Cat 

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  • claire29
    claire29 Community member Posts: 6 Listener
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    Hi Matilda

    Thats really encouraging that you could weight bear after a couple of days. That was worrying me the most. So glad it has given you back your independence. I’ve got a few months to make my decision for now managing the pain with steroid injections every few months.

    thank you for sharing your experience, hope your new knee lasts you a long time. 
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  • Matildacat
    Matildacat Community member Posts: 18 Connected
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    Thank you Claire. Good Luck with what you decide.?

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