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I Have Pigmented Villonodular Synovitis

Pvns?

By: rellis91
Written on November 6th, 2009

I have recently been diagnosed with PVNS in both ankles. I have had arthrosc opes done on both ankles now. I can't tell if it is any better yet. They still hurt from surgery. I am very upset about this as there does not seem to be a doctor around me that knows much about this condition. I am a working mother of 3 children at home and also have a grandchild that lives with me too. The world unfortunately does not stop when you hurt and you must move on. I just wish I could move with a little less pain. I think that I have this in other joints as well and would like to find out for sure. I am also looking to see if there are treatments that could possibly slow down the recurrence as my surgeon told me that left ankle was so bad he did not see how I have been able to walk for the last several years. Again, I said you paste a smile on your face and go about your day and don't let anyone know you hurt. I have a family to support. I really could use some uplifting comments from someone. I am very sad and depressed. Wish the pain would go away. Very frustrated with doctors. Still walking with crutches and was told that I will be doing that for the rest of my life. Please let me know that someone has survived this and is doing great..I just need some sort of hope to keep going. God Bless and I wish everyone the best!

By: rellis91
Age: 36-40 , Female
1,481 people have read this story

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    attud2
    attud2

    I understand completely I have had 2 different surgerys 6 yrs apart on my right foot/ankle for PVNS/giant cell tumor. My last go around was almost 3 yrs ago. I followed a 2009 Stanford study on this condition with the use of radiation therapy after surgery. This route is all my oncologist suggested or amputation. All that needs to be left behind in surgery is 1 cell and it starts again! Oncologist compares it to a Sarcoma. You are on a frustrating path, because as you have found very few Doctors know what it is, or how much destruction it causes. There is a wonderful group on Facebook called PVNS is Pants. Here you will find everyone's story, guidance and support! Good Luck to you on your journey and know you are not alone... There's 1 in a million of us.. Literally!!!
    Hugs!

    Nov 5, 2012
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    Ilovevictor
    Ilovevictor

    What is Pvns? what are the symptom's ? I don't understand what I have and I been goggling Synovitis because it is what the doctor sees I have except he those not no why I have it. I don't understand how I got it. My knee gets allot of liquid if I stand walk or bend it back when siting the liquid prevents my mobility and it those not allow me to bend my knee so I just drag it when I walk it gets really swollen I even star to limp because of it and once in a blue moon it locks up and I have to wait for it to unlock so I can move again. So far I been lazy on purpose im avoiding as much walking as I can because that is the only thing that make it feel good and the swelling goes down.

    Apr 13, 2012
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      PVNSer
      PVNSer

      Here is everything you ever wanted to know about PVNS: It is a rare joint disease that can affect any age group from age 15 to 70+ and it is a benign tumor resembling a parasite of sorts. It is often confused as arthritis, gout, or rheumatoid arthritis. Just to clear it up, it is Pigmented Villonodular Tenosynovitus and it has been around since 1940's. There is not any known cures for the disease, but Nilotnib is one drug that is used for leukemia even though PVNS is not a form of leukemia. Surgery does not help much other than to clean it out. PVNS is like a weed - if you don't get it all - it returns!
      Radiation may help to eradicate it, but it has to be a very low intensity and a directed beam that will not kill good tissues. Photon radiation is a possibility. I have suffered with PVNS for six years and probably know more about the disease than most doctors. Any questions?

      Dec 10, 2012
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    Soybean12
    Soybean12

    I know how you feel. Unfortunately, my keeps coming back, put other people do not have this issue.

    It's nice to share with people who know what I am going through.

    Jan 14, 2012
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    michellenicholas197
    michellenicholas197

    it good to no you are not alone,im surprised of how many people suffer with this strange disease

    May 22, 2010
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