Cerebral Palsy
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Coxa Valga

PinkpoppyPinkpoppy Member Posts: 18 Connected
Hi Everyone 
I've just been diagnosed with bilateral coxa valga and I would really like to hear from any of you who have experience of this condition. My GP has said I'll need to have both my hips replaced and I'm wondering if this is the standard treatment and how successful it is? The waiting times seem interminable and I'm finding it difficult to cope as I live alone without carers, so any advice or insights would be very welcome. 

Replies

  • chiariedschiarieds Member Posts: 7,884 Disability Gamechanger
    Hi @Pinkpoppy - Welcome to the community & thank you for joining. I'm sorry you have bilateral coxa valga, a condition I'm aware of, as I remember the term from when I was a physio student a long time ago. The surgery would best be discussed with your GP, or orthopaedic Consultant. I hope you don't mind me asking, but is there an underlying cause for this, e.g. Cerebral Palsy? Just if it was something like CP, others here may well have had such surgery.
    Have you been given elbow crutches to lessen your weight-bearing?
  • PinkpoppyPinkpoppy Member Posts: 18 Connected
    Yes I have CP, but no I don't use crutches but rely on a rollator to get round outside and a wooden meals trolley indoors.
  • chiariedschiarieds Member Posts: 7,884 Disability Gamechanger
    Hi @Pinkpoppy - Thank you for explaining. I'll ask our CP specialist to see if he can advise further. @Richard_Scope please would you help here, thank you.
  • Richard_ScopeRichard_Scope Posts: 2,719

    Scope community team

    edited February 2020
    Hello @Pinkpoppy

    Thanks for your post and a very warm welcome to the community. Hip replacement surgery is fairly common in people who have hemiplegic or diaplegic CP. Patients with cerebral palsy can often be burdened with painful hips, this as a result of muscle imbalance around the hip. Lots of people report experiencing pain, but also problems while walking and sitting, and are therefore often offered hip surgery as a treatment. 
    Outcomes are generally positive. The speed of your recovery will very much depend upon your overall health and the level of your CP. You will require lots of physiotherapy to help aid your recovery. It is very important to listen to medical professionals in terms of the 'does' and 'don'ts' after surgery. I am very aware that it's almost an instinct to want to prove people wrong when you live with CP but sometimes it can work against us!

    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
    Thanks so much for this @Richard_Scope. It's especially helpful as my GP had never come across the condition before.  The problem I'm now facing is that waiting times for hip replacements locally is 10 months, and I haven't  even seen then initial orthopaedic screening physio yet. This is really worrying as my walking seems to be deteriorating very rapidly to the point where it's a major struggle just getting around my flat for the most basic tasks, so I'm really not sure how I'm going to cope. And to date Social Services have been less than helpful. 
  • RegReg Member Posts: 26 Courageous
    Hello I have mild CP and hip dysplasia and understand that is a form of the condition you have - hip bone not correctly formed and hip muscles won’t work properly with the CP.

    My mobility has reduced a lot in recent years with increased hip pain and subluxation. I have had hip surgery after seeing two surgeons but both have said I should be wary of a full hip replacement as the hip dysplasia makes the replacement harder and you are at greater risk of dislocations after surgery and your new hip can wear out v quickly because of your gait. I was impressed by both surgeons as they stressed not to just jump for full hip surgery and not to go to the nearest hospital as they might just replace and I may end up less mobile.

    I had arthroscopic surgery to try to reshape the hip a bit as they thought I’d recover better from that type of surgery.

    You may want to ask your gp for a referral to a surgeon who specialises in dysplasic hips or young hips or complex hips - the first surgeon I saw researched and found the second surgeon for me .

    I realise I was very lucky to find two v good surgeons and hope you can get your GP to make the right referral. I didn’t have to wait for physio assessment so hope you can skip that.
  • PinkpoppyPinkpoppy Member Posts: 18 Connected
    Reg, thanks so much for your post. I saw my neuro physio yesterday and she said pretty much the same thing, that the uneven tension in my muscles may make full hip replacements ineffective.  I was quite disappointed as my GP implied that surgery would effect a good outcome, but now it seems far less assured. I will discuss the matter with the consultant when I eventually get to see them, but fear I won't have much choice as to who I see as they're rather thin on the ground in my neck of the woods.

    May I ask if you experienced pins and needles in your foot? I seem to be getting it more and more, but don't know if that's part of the condition or something else. Kicking myself that i didn't ask the physio yesterday!
  • RegReg Member Posts: 26 Courageous
    Hello 

    It may be worth the travel to see an expert as I know there are experts in hip dysplasia and your condition in London, Birmingham, Manchester and Scotland so it may be better to try and see an expert. I was just lucky that my first surgeon was honest and said he didn't want to advise or operate but would just sort out the MRI scans etc so the next surgeon had the information he needed to decide on what sort of operation would be best.

    Both surgeons were at pains to stress that a local hospital could make the hip a lot worse and that it isn't just the first hip operation that is the problem but the follow ups and scar tissue, especially the revision surgery as you wear your hip out quicker and dislocate it more often.

    The physio and podiatrist I saw wanted me to have an operation to stretch the hip muscle and the other thought an operation to redesign the hip structure but the surgeons say I could end up with bad outcomes and not walking. It is a pain as both knees are shot because of the hip gait but I suspect surgeons will be wary to replace them because I will lose hip strength while recuperating.

    The surgeons and physio are telling me to do less. I did question that advice as I thought the best advice was keep active but was told that being sensible is the best way to preserve what you have - so I am trying to be sensible but not too sensible!

    As for the pins and needles - oh yes. The podiatrist says that is drop foot and the physio says it is the start of spinal stenosis because of the hip gait but whatever it is the solution is to use ice packs and keep moving the foot up and down.

    Sorry to not say to you that hip surgery is the solution and all will be well , despite the CP.  I thought I would be told I could have a straight forward hip replacement but I am forever grateful to have had the honest warnings. Hopefully your GP or your neuro physio can help get you to see the right person because although it wasn't the answer I wanted to hear they were both very kind . The operation I had hasn't improved things but I was only given a fifty percent chance of it working so knew the odds weren't great - I was told that without the hip dysplasia and CP it would have had a ninety percent chance of helping me walk in a more normal fashion but I guess that isn't going to happen!

    I wish you all the best with the referral and do let me know how you get on and do let me know if you have tips on life without bending your hip       
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