PVNS anyone else heard of it? — Scope | Disability forum
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PVNS anyone else heard of it?

Saw my orthopaedic consultant Thursday 12th Aug who was surprised by my MRI scan on my left knee. I have a rare tumour called pigmented villonodular synovitis or PVNS for short. He said unfortunately not much is known about it but it can't spread to other joints. I am not convinced as my left hip is also incredibly painful and I had it x-rayed but not mri'd. He said it doesn't show on x-ray because it's soft tissue. 
My question is has anyone else heard of it. He is going to perform keyhole surgery to look biopsy and remove and wants to give me a steroid injection in the painful hip. I want the hip investigating further. I already suffer fibromyalgia osteoarthritis CFS so pain I think is my middle name.
Any help or advise is welcome.
Thanks Jody

Comments

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi again @jodyeeyore - I've had a look online, Jody, & it does seem that PVNS is local, i.e. only affects one joint (the knee in about 80% of cases). There's some info here: https://orthoinfo.aaos.org/en/diseases--conditions/pigmented-villonodular-synovitis
    Depending on what the problem with your hip is, speaking personally, I've had one steroid injection in each hip several years ago, & did get pain relief, so I hope it's the same for you. Hopefully this helps, but if not I would imagine your hip pain would be investigated further. Has your consultant mentioned what he thinks the problem with your hip may be? I'm sorry you're in so much pain.
  • jodyeeyore
    jodyeeyore Member Posts: 10 Listener
    There are signs of arthritis but my pain is horrendous and although I take lots of strong meds for pain relief it's not touching it at the moment. I use ketoprofen gel too at night and first thing in the morning. I will check the link, thank you for your help. 
    Jody
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @jodyeeyore - I also have generalised osteoarthrosis due to the hypermobile joints I have because of a genetic disorder called Ehlers-Danlos Syndrome; the excessive movement in many joints leading to the 'wear & tear' seen in OA.
    I don't know (but hope) that there's something in the following post that you may find helpful as sometimes, & often in addition to pain medication, other modalities may help. For example, I use gentle exercise, & the breathing exercise in this link; I used to teach these as a physio, but now I practise daily what I used to teach :) ; then it's often something that distracts me, whether it's a good book, music, or a film, as well as getting out into my small garden when I can, together with mindfulness, mainly. It's finding what may work for you. Please see: https://forum.scope.org.uk/discussion/75929/coping-with-stress-low-mood-and-isolation-a-support-thread/p1

  • jodyeeyore
    jodyeeyore Member Posts: 10 Listener
    Thank you any help and advice is very welcome.
    Jody
  • cullen92
    cullen92 Member Posts: 1 Listener
    Hi, I also have PVNS and have just heard my second left knee surgery, make sure you keep pushing for your hip to be checked, I went through exactly the same thing and in the end my persistence paid off and they mri’d my right knee after years of pain just to find out I had pvns in there too… it is very rare but very possible to have it twice. You know your body better than anyone else, keep pushing. I hope it works out for you

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