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PVNS

Posted , 4 users are following.

jane05932
jane05932

Diagnosed with PVNS to knee in Dec 2014.

rheumatology are unable to help, Orthopaedic consultant has recommended injection to reduce swelling/pain.

Has anyone had any success with injections?! 

0 likes, 16 replies

16 Replies

  • lorrigrl
    lorrigrl jane05932

    Posted

    What type of injections? what us your age? I have had pvns for 39 years, lots of advice to give!
    • jane05932
      jane05932 lorrigrl

      Posted

      Corticosteroids I believe...52 yrs old.

      39 yrs with PVNS seems a long time to have this condition? Is It  not curable then? 

      How often do you have episodes of swelling and how long do they last?

    • Oldfatguy1
      Oldfatguy1 jane05932

      Posted

      What type do you have. I have diffused which means the tumor is spread throughout the joint. The other variety is like a large growth or cyst. Did they scope your knee and do a biospsy. If not, I'd get a 2nd opinion as its impossible to look at a joint and diagnose the problem. Mine bleed so bad o had to have several procedures to drain it, radiation and a synovectomy before it was given a firm diagnosis. I've had 5 surgeries since and unfortunately they can't get it all as its in a nerve cluster and too dangerous to go after. Not a pleasant overview that's why I'd want more than one docs opinions. I finally saw 2 orthopedic oncologist for the final answer. I was older (65) when mine blew but normally its a 20-40 yr old that gets hit by it. I have heard of children having it bit personally don't know them
    • jane05932
      jane05932 Oldfatguy1

      Posted

      Hi

      it was diagnosed through a biopsy and it's diffused.

      cant really drain it as I have a pkr......just wanted to know how often people have like episodes of swelling and being unable

      to weight-bear? 

    • lorrigrl
      lorrigrl jane05932

      Posted

      In the early years, there was nothing much known about it. I had great swelling and had my knee drained once a week. I received Cortisone shots once a month also. It helped some but had 9 surgeries before I was 26. Then I did 36 rounds of radiation, and it has not recurred since. Lots of damage was done and 18 years later had a knee replacement at 44. It was on January 8, 2015
    • jane05932
      jane05932 lorrigrl

      Posted

      Oh dear that sounds quite dramatic.

      if you don't mind me asking- why didn't you have the knee replacement sooner?

      when your knee was swollen, how long did this last for before returning to normal??

    • Oldfatguy1
      Oldfatguy1 jane05932

      Posted

      There was no knee problem or indication of problem until the bleeding started. In 3 hrs my knee went from normal to 4" larger. The tkr was the finale. The tumor came back and gradually and ate up the bone causing the original tkr to come loose and had to be redone. As I said before, its still in there and will continue to grow. Hopefully my age will be to my advantage as I'm now 78. Good probability I'll be history before it can do me in again

      This is a very rare disease. My original orthopedic group had 8 docs with over 100 hrs experience and together they had never seen a case.

    • Oldfatguy1
      Oldfatguy1 jane05932

      Posted

      Its unpredictable. I had radiation and a synovectomy and they couldn't get it all. They had to put me to sleep 3 x's to drain mine. They were taking 200cc each time. Then 5 drainings w/a needle. Not sure why they can't do a needle drain with pkr, I just had one with tkr. But then again, I sure as heck am not a doc.
    • lorrigrl
      lorrigrl jane05932

      Posted

      I was 26, no dr would touch me because of my age..I had to jump through hoops to get it done now..it retained fluid every week..1200 cc average.
  • jane05932
    jane05932

    Posted

    Anyone any advice on PVNS ?

    experience of drug therapy and treatment would be grateful!

    • Oldfatguy1
      Oldfatguy1 jane05932

      Posted

      I had 30 rounds of 75% radiation plus a synovectomy. The radiation burned the tissue and made recovery from the eventual tkr much more difficult. Due to the extensive growth of the tumor it couldn't be completely removed without possible nerve damage that would cause the loss of limb. I have seen 2 orthopedic oncologist plus the surgeon that specializes in knee & hip replacement at a teaching university medical center and no one has ever mentioned any type medication. I was 65 when it blew up and unfortunately, still have it 12 years later and I'm sure its continuing to grow. I know this paints a rather gloomy picture but I do hope you find some different type relief and a sure cure.
    • jane05932
      jane05932 Oldfatguy1

      Posted

      Synovectomy seems like the answer but my consultant mentioned injections first....personally I don't think that reducing the swelling and pain is gonna do anything to resolve the PVNS.  The last resort would have to be a total knee replacement but I was hoping to avoid that!!

      when you have a flare up of the PVNS how long does it last for??

    • Oldfatguy1
      Oldfatguy1 jane05932

      Posted

      The beginning can.e suddenly without forewarning. I had been sitting for several hours and when I got up I had trouble bending my leg and the pain was unbelieveable. My leg was swollen by nearly 5". The local ortho group was mystified and eventually I had to be put out and they drained 200cc of mostly blood. Over the next2 months I underwent 2 more of these procedures with the same results plus 5 needle drainings of 65-75 cc each. The radiation slowed the bleeding but not the pain. The synovectomy 8 months later controlled the last of the bleeding but a year later I had to have the tkr. 9 yrs later the tumor had eaten all the way around the prosthesis and it broke loose and had to be revised. I can't say I have ever been pain free in the 12 plus years, much of which I blame on the decision to do radiation and the damage it did to soft tissue.
  • Roach
    Roach jane05932

    Posted

    Oh boy, this sure brings back some memories. Well, I thought I'd add a brief of my own journey with PVNS. I'm from Adelaide, Australia.

    I developed the difuse form in my left knee back in the mid/late 80s after a drunk fell down on me at a party. As it turns out, I had the most agressive case seen by the Surgeon.

    The first 'Debaulking' synovectomy was in 1989, and after another 10 such arthroscopic procedures over  the next 10 years - and a Yttrium radio isotope injection - I changed surgeons.

    Over the next 12 years I had yet another 20 synovectomies - open post/ant by now - to clear my joint of this agressive disease. Eventually the collective damage from the disease, the amount of scar tissue around all the nerves & vascular stuctures, and the damage done to my articular cartilage from the radiation reduced my functionallity to very limited at best.

    Without anything further I could do, I did 3 years in an 'Unloader brace' to releive the load on the now collapsing medial side of my knee.

    Eventually by Feb 14 - with a conventional TKR not an option due to active pvns, and the huge bone loss/damage - the only other advice from another surgeon was amputation, which I dismissed imediately.

    I consulted my normal Surgeon, who by now was the Ass Prof of reconstructive musculoskeletal tumour surgery at Royal Adelaide Hospital. Mark offered me a proximal femoral implant.

    So they basically removed the entire joint from a third way up the Femor, and down to the Tibial plateau. Replacing the whole lot with an OSS/Compress metal prosthesis. 

    I undertook this operation in May 14. A big operation of 5 hours, but recovery was very good and very positive. I made this my mission!

    I'm very happy to say that this has been the best ever thing I've had done. I was down to hobbling no more than 5k steps a day, but now I can easily do upwards of 25k a day again with out too much pain.

    PVNS can be a totally bad experience, but not always the case. In my case, it has shaped, limited, cost & and tarred my life with so many impacts I can't even begin to sum up where the fight has taken me.

    I hope this wasn't a negative read... its just the truth of my experience.

    Cheers & regards,

    Roger

    • Oldfatguy1
      Oldfatguy1 Roach

      Posted

      As a fellow sufferer I so greatly admire your courage and tenacity. Sure hope this continues to go well. Every time they have t o go in they find new patches of the tumor. I am aware they can't get it all as one spot sits in the middle of a nerve bundle and there is a danger of losing the leg If there is even the tiniest screwup or slip. I am trusting this last surgery will be just that, the last. Age is in my favor. I didn't start on this journey until I was 65 and I turn 79 in a month so maybe, just maybe, I can hobble on down the road to the final sunset. The weakness is just hard to deal with at times. I just keep pushing. There was a young lady on here a few months ago that had close to 20 surgeries before age 20. She is very young and was having a tkr. I talked to a Dr in a local Childers hospital and the had a girl 16 that had pvns jumping from joint to joint and had already had 13 surgeries on 9 different joints. We are not legions in number but make up for it in surgery count.
    • Roach
      Roach Oldfatguy1

      Posted

      I truly wish you well in your on-going fight with this, I just doesn't seen to ever go away easy. Any amount of of the abnormal pvns tissue remaining around the joint & capsule allows the bugger to re-occur.

      My surgeon had one other severely argessive case like mine, and he indicated that after so many years, she'd kind of 'lost it' It had driven her over the edge. Not surprising, as so many people - even friends/family - just don't understand. More likely they think you just don't have good advice and are perhaps a serial whinger.

      Standard TKR is not generally an option with difuse pvns, as the disease makes its way into any bone defect or cavity and destroys the bone/prosthesis union.

      I think, although I was only relatively young - 49 - when I had the full re-section of my joint, it was really the only way to be sure that the disease was completely removed. The joint was so stuffed anyway after 25 years & 30+ huge operations, there was no other option.

      The key to success was definitley the mental war, and the pre-surgical build-up. 5km a week in a public pool for 4 months bought up my fitness & core strength. Indeed made the recovery so much easier.

      I have to say, it certainly wasn't the terrible experience I'd feared, and the recovery is really no worse than with a standard TKR. So if you find your life is being held hostage by pvns beyond your tolerance, I definitely would explore this option.

      Good luck in your fight, and struggle on, enjoying life in spite of the b*st*rd. smile (y)

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