PVNS in knee, quality of life? — Scope | Disability forum
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PVNS in knee, quality of life?

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delilahtung
delilahtung Community member Posts: 1 Listener
edited December 2021 in Rare, invisible, and undiagnosed conditions
Hi there. I went for an MRI believing I had a meniscus tear. I only found out I had PVNS when written into a letter sent to my GP. The consultant really couldn't be bothered with me tbh. I was the last to be seen and he was running 50 mins behind. All he said was it was arthritis and it would degenerate. I asked about long term prognosis still believing I had only arthritis and he just said we'll discharge you and see how it goes. My question is this. The tumour is 20mm×8mm benign I am led to believe but according to treatment guides by NHS and others it should be biopsies on? I also have hip pain and degenerative arthritis in my feet and I'm in acute pain constantly and can't actually get up or kneel on the knee the tumours in. Shouldn't I have been given more info and monitored or even offer some surgery so I can atleast try and enjoy some quality of life as I'm only 47 and live alone ? There's still some things I would like to get done before my mobility gets worse. 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @delilahtung - & welcome to the community. I'm sorry that your diagnosis has caused distress as your consultant didn't even mention this to you, & you only found out from his letter to your GP. PVNS is rather rare, tho we have had one member with this, & it is benign. I feel you should have been given more info, so would suggest you now discuss with your GP as they have your consultant's report & are in the best position to advise you.
    You might also like to look through some good info on PVNS in the following link: https://orthoinfo.aaos.org/en/diseases--conditions/pigmented-villonodular-synovitis
    Kindly let us know how you get on with your GP, thank you.

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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi @delilahtung and welcome to the forum, thanks for joining us and reaching out. I'm sorry to hear about the pain PVNS is causing you, that can't be easy at all. 

    To help our members find your discussion I've moved it into our Rare Conditions category, I hope you found chiarieds reply helpful, and keep us updated when you've spoken to your GP. 

    Please do let us know if we can help any further, or if there's anything you're unsure about, we'd like to support you as best we can :) Have a lovely boxing day in the meantime. 
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