Cerebral Palsy
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Does anyone have any experience of a hip replacement with CP?

Caz1980Caz1980 Member Posts: 7 Listener
edited July 2017 in Cerebral Palsy
Hi I am 36 and have CP effecting my lower limbs.I had both of my Achilles' tendons lengthened in 1987. I live as active life as I can, I have a job which I love, & an active social life. I struggle with increasing pain on a daily basis. I try to stay a cheerful & upbeat as I can!  I also have a hereditary hip complaint which I have been toId that at some point in the future I will  need a double hip replacement. Is there anyone with the similar symptoms or experience of a hip replacement with CP?
Thanks Caz  :)

Caz

Replies

  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    Hi @Caz1980,

    Welcome to Scope's online community! It's great to have you on board.

    We have a whole category dedicated to cerebral palsy which might be of interest to you. I've moved your post into the group, so other members of the community can get in touch with you.

    If you have any other questions, then please do let us know!
    Liam
  • RegReg Member Posts: 26 Courageous
    Hello , 

    I am in my early 50s with mild CP and arthritis . I have most difficulties with my hips as I can't seem to control the muscle spasms with stretches or baclofen and so I sometimes find that I can't weight bear .  I thought the answer was hip replacement as a friend without a limp had one done and made an amazing recovery - but she doesn't have CP.

    I have been told that as I am in my 50s I still have young hips and to try more baclofen or Botox injections. I think that my muscle spasms make it more likely that any hip replacement will just do what the current hip does and still feel as if it is slightly in the wrong place - so I can't easily stand on it.

    I'd be interested to hear if anyone has benefited from hip replacement or if the spasms just create the same problems whether or not you have a replacement?

    At the moment I tend to think better left alone as I have had a lot of hand ops in the past and my hands are still a bit clawed up. I also think the replacement only last about 10 years or less if you have a funny walk as I do , hence  I have arthritis in the hips , knees etc.

    My solution is walking the dog as I am told that walking is the best thing for arthritis , and the hip seems to go into spasm whether I walk or sit. Sadly for the dog I keep tripping up over him or my leg has a mind of its own and connects to his rear end. I don't think he will ever learn to walk to heel as a result ....

    Hope someone has some experience of hip replacement to help judge if it is worth taking further as my hips certainly don't feel young!

    Reg
  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @Caz1980, I had a left hip replacement 2 years ago. 

    My advice would be to talk to your surgeon and carefully consider all the options.  It is a major operation and everyone is different, so your outcome could be different to an able-bodied person, or even someone else with CP.

    I have struggled to fully recover and have not regained my balance.  I have also experienced increased pain and spasms.  Although from a medical point of view my hip replacement was successful, my CP has been a major limiting factor in my recovery.

    I have gone from being ambulant to using a wheelchair.

    Good luck.

  • Caz1980Caz1980 Member Posts: 7 Listener
    @ourvoices
    Thank you for your reply. I appreciate your advice. :)
    Caz
  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @Caz1980, I'm glad the advice was helpful.  I think it might also be helpful for me to put a more positive steer on things for you too - especially as you have a very positive outlook (which helps massively with the recovery).

    The pain I experienced from the arthritis was cured by my hip replacement and one of my reasons for choosing a wheelchair over walking was because I was experiencing pain from an on-going ankle injury.

    Please don't be put off about having a hip replacement, as this really might be the best thing for you - but do consider everything carefully.  You can always ask for a second opinion which can be helpful when making such a big decision.

  • Caz1980Caz1980 Member Posts: 7 Listener
    Hi @ourvoices
    Thanks I won't. Having a hip replacement will probably be my only way of keeping active & on my feet due to the pain that my hips are now causing. 
    What worries me is that the Orthopaedic Surgeons seem to think that my CP doesn't have any bearing on my hip replacement, which I know not to be the case from a previous surgery. Luckily for me I am not afraid of making concerns heard but it is difficult if surgeons don't always understand. I also worry for others who may not feel comfortable to speak up. 
    Caz
  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @Caz1980,

    It might be useful to ask the following questions:

    Find out whether your bones are a 'normal' size for a person of your build/age - this might sound daft, but your CP may mean that your bones are smaller than average which can affect your ability to have revision surgery (if you were to suffer an infection, loosening or dislocation).

    As you are much younger than the average patient needing a hip replacement, it needs to last as long as possible, a ceramic implant is definitely worth asking about.

    What type of joint replacement will they select - this can be important for someone with CP, as the spasticity can increase the risk of dislocation.  A ball with a larger surface area can help with this problem.

    You might find this information from the NHS helpful (if you haven't seen it already): http://www.nhs.uk/Conditions/Hip-replacement/Pages/How-it-is-performed.aspx


  • Caz1980Caz1980 Member Posts: 7 Listener
    Hi @ourvoices
    Thank you so much for all your help & advice. It is much appreciated. Caz :) 
    Caz
  • Rachel88Rachel88 Member Posts: 2 Listener
    Hi, I have just posted a hip related question regarding my daughter who is 29 and has hip dyplasia. Whilst not a candidate for surgery yet, she has some discomfort in her left hip and I'm wondering if it's time to think about regular painkillers now. May I ask what, if anything, is recommended please? Thanks in advance 
  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @Rachel88,

    If your daughter isn't taking any medication at the moment it is possible that her GP might start with something like Co-codamol (Opioid) and Ibuprofen (to help with pain and inflammation).

    Diclofenac (NSAID) is also another entry level medication used for pain and inflammation.

    Tramadol is another opioid option if the previous medications do not sufficiently alleviate the pain.

    GPs will tend to go down these routes, but specialists will often suggest different medications depending on the responsiveness, side-effects and progression of the condition.

    Hope this helps. 

  • grannykitgrannykit Member Posts: 2 Listener
    Hi, I’m new to this website, so please forgive any ignorance in advance! I also see that I’m posting this a bit late!
     I am 64,  I have cerebral palsy that only affects my legs. I have had arthritis for about 20 years, and have used a wheelchair since.  I had both hips resurfaced about 12 years ago, with a view to having them replaced as and when needed. So far they’re ok... 
    in my experience, I wish I had started using a wheelchair sooner, as I struggled with my mobility for far too long before using one. I had a LOT more pain when I walked unaided, and when I started using walking sticks. 
    I now have two dogs, and I take them out with my mobility scooter. I love the freedom it gives me, and the chance to meet other people. Before I had a dog, (or a scooter) I never went out on my own.
  • Richard_ScopeRichard_Scope Posts: 2,732

    Scope community team

    Hi @grannykit
    Thanks for your experiences and a very warm welcome to our community!
    Scope
    Specialist Information Officer - Cerebral Palsy

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