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I Have Pigmented Villonodular Synovitis

Recurrent Pvns, Radiation the Best Option?

By: ecogirl22
Written on November 13th, 2008

I was diagnosed with PVNS in 2006 (at age 25) and had open surgery in three places on my right ankle. Now in 2008 its back. My doctor (new doctor, moved from New Hampshire to D.C) says it may be hard to get  to with surgery but for some bizarre reason doesn't seem to be wild about Radiation Therapy options. I've heard radition is the best treatment for people with difficult to reach PVNS. Anyone have experience with radition treatment?

 

If so, did you have the radiation before, the same day, or post synovectomy (and if so, how long after surgery)? (I'm trying to figure out if i can fit it in before my insurance period ends). I'm supposed to be going on a vacation to the dominican republic  this christmas but am not sure if my ankle will heal well enough in time!

By: ecogirl22
Age: 26-30
2,520 people have read this story

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8 responses
  • Soybean12
    Soybean12

    I had Radiation about a month after surgery. I had it done to the back of the knee and so far it has been holding. 6 years and counting!

    Apr 7
    1 like
  • Zorrozorro
    Zorrozorro

    Ecogirl, you said you moved to DC, would you recommend anybody in DC for PVNS? I have pvns in my left knee and I live in DC. It seems hard to find a doctor who has dealt with pvns before. I'm searching for a good doctor to have it removed. Please let me know if u know anyone

    Mar 28, 2012
    1 like
    • ecogirl22
      ecogirl22

      I went to Dr Francis McGuigan at Georgetown University Hospital in their foot and hand center. But he only does foot and ankle I believe, but he may do knee. He would probably have good references. Since my PVNS didn't grow back and 2 yr MRI is clean, I can highly recommend him, although he did misdiagnose my unrelated hip labral tear as a fracture--which is not the case.

      I had cyberknife radiation. 5 hours over 5 days. Painless, scar-less, and 100% effective (for me). Insanely costly, charges to my insurance Co were $100,000.

      Mar 29, 2012
      1 like
  • Soybean12
    Soybean12

    I have had radiation after about 10 surgeries, it doesn't stop it, but it does slow it down. When I do have a suntan, you can see the radiation burn. But you do have to look hard. There my someday be a light at the end of the tunnel!

    Jan 14, 2012
    2 likes
  • abrady917
    abrady917

    I have recurrent PVNS (its back for the fourth time in four years) Last summer I went through radiation and obviously that did not work...however it did slow it down. I had surgery in July of 2008 and started radiation in August of 2008. Radiation is not fun. And you can have leftover symptoms from radiation for years after you've actually completed it (I can verify that one for sure). You're not supposed to expose new scars to the sun for a year after surgery, my scars now look horrible because I ended up with a radiation burn. I've always heard its best to do radiation after a synovectomy.

    Nov 22, 2009
    2 likes
  • Jennyt85
    Jennyt85

    Hi. I have recurrent PVNS in my knee and I just found out it grew back after having two open synovectomies to remove it last year. Basically the doc says radiation is an option but even if I have radiation there is a chance it could grow back again. Also, he said that it is like putting my knee into a microwave, so all of the other tendons and stuff could really be affected and it may do even more harm to my knee. It is my choice but I am very hesitant to try something that might not even work and do more damage in the process. I am going to do my research and try any other options first. Best of luck!

    Sep 6, 2009
    1 like
    • ecogirl22
      ecogirl22

      I'd highly recommend it. According to my Drs ankle joints are even worse then knee joints and cyberknife radiation (computer done) is so precise, there was no ...anything- pain, etc. I did do 3 months of PT and that hekped me get to better then i was pre surgery (making up for bad first surgery) My experience with cyberknife radition was so good, I'd recommend to do it for the first surgery. Also, my reaserch seemed to say radiation was nearly 100% effective (over 95%) nearly no cases of recurrence post. Your doctor may not have the latest information on this rare disease and its treatment.

      Mar 29, 2012
      1 like
    • horizon2008
      horizon2008

      hi,can you offer me some information about cyberknife radition ,for example,where had you have cyberknife radition for treat PVNS?thank you a lot.

      Apr 7
      1 like