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Pvns

Posted , 4 users are following.

Biddybud
Biddybud

IS

THERE LIFE

AFTER PVNS.........

0 likes, 19 replies

19 Replies

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  • Roach
    Roach Biddybud

    Posted

    Hi there! It sounds rather like you have been having a nasty fight with pvns. I did, and it was over a 27 year span, taking me from my earl/mid 20s to 50. Along the journey, I chalked up over 30 operations, 3 relationships, was denied my fav sports, had my career options limited and was forced into early retirement. On the positive side, I met one of the best friends I'll ever have ( Michelle, who was also fighting pvns), I've now had the entire joint resected and replaced with a well functioning distal femur implant, Ive met & married the woman I'll live out my life with, and I'm back working full time again (in a logistics business). So in answer to the question "...Is there life after pvns?"Yes, I have to say there most definitely was for me.

    Good luck, and don't give up on enjoying life. You may just have to change what & how you enjoy it a bit.

    Cheers,

    Roger

    • LindaKeats
      LindaKeats Roach

      Posted

      I am so pleased you found your happy ending.

    • Roach
      Roach LindaKeats

      Posted

      Thanks Linda! And you will too. PVNS sucks, and is an agent of change in your life, but I saw it as a personal fight that I was going to make the most of & win. And if the people around me were more comfortable with their ignorance of my plight, then I reduced my time with them, or distanced myself from them. You need people who understand and are ready and offer their support if they can help. But above all, its your personal fight and you'll win it your way. Good luck with the fight, Linda.

      Roger

    • Biddybud
      Biddybud Roach

      Posted

      oh my gosh reading this brought tears to my eyes. THANKS for taking time to write this. I had mri with intravenous contrast and seeing my consultant im in so much pain and after having my knee in a vice for 40 mins. struggling to walk. THIS really gives me hope Roger thanks

  • LindaKeats
    LindaKeats Biddybud

    Posted

    I am wondering that myself!

    In April this year I had an arthroscopy in my knee for tears in the meniscus. It felt a bit better for about a few weeks but gradually it got more painful and swollen. by the time I went back to see the consultant for the 6 week after surgery check, it was really bad. He removed a lot of fluid from my knee and inserted a steriod cortisone injection.

    This was a amazing for about a week and then all the old symptoms came back again. so I had another MRI scan and my surgeon said he thought it was PVNS (Pigmented Villonodular Synovitis)

    So I had another arthroscopic surgery where he removed all the excess tissue, ( which was sent off to pathology for confirmation of diagnosis) . Again it was great for the first week but now 4 weeks later I am back to being in agony. As I type I am sitting on the couch with an ice pack on my knee.

    This has now been going on for 20 months and it has changed my life completely. I can't drive, or walk to the shops, or even stand for any length of time. I was so active before.

    I am now waiting to see the surgeon again and to hear if the diagnosis was confirmed. I am beginning to be despondant and to be honest I think my family are sick of hearing about my knee !

  • Biddybud
    Biddybud

    Posted

    Gosh Linda they say its behind my knee cap and diffused im wondering if its going to be keyhole or open. Either way i just want to get on with it. been in the dark to long now. good luck linda

    • Roach
      Roach Biddybud

      Posted

      From my experience, the most successful approach for Diffuse PNVS was the open synovectomy - in my case usually front and back, because it had gone everywhere.

      Hey, and don't let anyone tell you that a Yttrium 90 injection is the way to go for ovns treatment. It is not effective, but it will age/wreck your cartilages. Its the reason I ended up having the joint fully resected and an implant put in.

    • Biddybud
      Biddybud Roach

      Posted

      Im going to say this to my consultant ill let you know how i get on.

    • Roach
      Roach Biddybud

      Posted

      Good stuff! If your consultant doesn't openly admit that a Yttrium 90 injection is a failed experiment, then they're not up with the latest research. It was cutting edge in 1994 - when I went for it out of pure desperation - and even my Orthopaedic surgeon at the time admitted that there was a risk it may well accelerate the destruction of my knee structures. He was right!!

  • LindaKeats
    LindaKeats Biddybud

    Posted

    I was very ignorant about PVNS, in fact I'd never heard of it, but now I have it I've have researched it as much as I can. I have slowly come to the realisation that there won't be a quick fix for my problems and it could be a long journey.

    I have found a very good support group on Facebook called 'PVNS is Pants.' It has helped me so much to understand what is going on, and makes me feel part of a family of people that know exactly what your talking about and know your pain.

    I wish I had found it earlier, as it answered so many of my questions.

    Well worth joining.

    • Roach
      Roach LindaKeats

      Posted

      HI Linda, yes, I was a member of that FB group for quite a while. We helped each other a lot with information, support & listening to each other's plights. Sometimes it the people around you in your life that make you feel the worst - inadvertently of course. Because most people can't get their head around what the disease is - and its effects - they find it easier to decide that you just aren't coping with a simple knee problem and aren't getting good advice. Eventually they begin to write you off as some kind of surgery addicted hypochondriac. I even gave my family & work colleagues a really simple 2 page printed explanation of the condition, but I swear none of them read it, as I had to correct silly statements explain things over & over every time I had surgery.

      The only thing I'd be careful about with the FB page is person who became one of the administrators - Matt, I think was his name. He's a bit stupid & irresponsible There was a discussion about having Yttrium injections for treatment. So when I explained how I'd had a Yttrium 90 injection in 1994, and that 20 years later my knee joint was obliterated - and multiple high placed surgeons had since admitted the treatment is ineffective & damaging - he simply pointed to the fact that he'd just had one and he was fine - he obviously didn't get it. it takes a decade or more, but it will wreck your joint. He went on to openly encourage people to have a Yttrium 90 injection, when any competent surgeon who's up with the research knows that's just the worst thing you can do.

    • LindaKeats
      LindaKeats Roach

      Posted

      Thanks Ro, I'll look out for Matt. I did read about the yttrium injections and wonder if they were like the Cortisone injections I have already had?

      I know exactly what you mean about friends and family. 'Compassion Fatigue' sets in really quickly. I swear even my husband hasn't read up about it. You described it exactly right. It feels a bit lonely but talking to others in the same boat really helps.

      I think you have to take into consideration that the people that are still having problems and need support are on these web pages. Unfortunately you don't hear from all the success stories that must be out there. So thats why it was so nice to hear that you are finally doing well after a long journey. Best of luck for the future. Linda x

    • Roach
      Roach LindaKeats

      Posted

      Thanks Linda, yes, things did work out for me in the end. My wife - Cate - suffered a very similar plight, with people not understanding, as she suffered terribly with endometriosis for years - before we met. Our meeting was kind of another uncanny 'right' that was born out of the 'wrong' of pvns.

      Hey, and just to be clear, Yttrium 90 is a beta emitting radioactive isotope. So its a radiation injection and you're immobilized for two days post injection to protect the injection site from any damage. Just don't go for it, its a 'Fail'!! (y)

      Anyway, I sincerely wish you the best of luck & support with your plight too Linda. Feel free to chat any time, ok =D

    • LindaKeats
      LindaKeats Roach

      Posted

      I will avoid those injections!!!!! Thanks for the chat, it's been nice. Linda

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