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I Have Pigmented Villonodular Synovitis

A Pigmented Villonodular Synovitis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Pigmented Villonodular Synovitis. You're not alone. 137 People

    For Days When You Are In Pain And Feeling Low

    I hope this makes you smile. I've had a couple of days of moping around and feeling sorry for myself and now I think damn this thing!!! I'm not waiting around for a light at the end of the tunnel, I'm gonna stomp my way down it and turn the darn switch on myself! I'm fighting...
    RobertaSunset RobertaSunset 36-40, F 2 Responses Apr 24, 2012

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    Pvns - Alterative Treatment In Australia - I Have Pvns My Story And Suggestions

    I was diagnosed with PVNS in my right elbow just 2 weeks ago however the radiologist who did my MRI told me after the second MRI that I should go home and Google PVNS..not too get too scared by what I was reading but to be well informed. I gathered from that I had a high chance...
    kezmc kezmc 46-50 7 Responses Oct 17, 2011

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    PVNS In My Right Knee

    Hi I'm Jess and I'm eighteen years old and i figured out i had PVNS when i was sixteen. I went thru draining the knee to taking a MRI and an xray. its all so long and confusing. and too top that i have a needle phobia. i finally just got fed up with the tight-ness and not being...
    sickofpvns8 sickofpvns8 18-21 30 Responses Nov 5, 2008

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    Recently Diagnosed With Pvns

    So far it has been found in my left knee and my ortho doctor told me that the sooner I have an open synovectomy, the better and I was also told I woild need radation therapy after surgery.. He showed me the MRI and I could see where it has totally invaded my knee & surrounding...
    jjbinjax jjbinjax 51-55, M 3 Responses Jun 14, 2010

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    Really? I Would'Ve Rather Had The Torn Meniscus.

    Hello. New to this whole disease. I've had serious knee pain when exercising for about 4-5 years. Was continually told it was "runners knee" and to just ice it, take it easy, run shorter distances. In Feb of this year, I was in the kitchen making dinner, pivoted to put something...
    marieaitkins marieaitkins 31-35 4 Responses May 14, 2013

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    At Last Other People With PVNS!!!!!!!!!!

    Hi ! I have had one awful rollercoaster ride of the last 8 years due to PVNS. I had 8 manipulations, hydrotherapy,acupuncture,drugs by the bucket full, physio - all the usual stuff i guess for this condition. Well 3 years ago my knee reached a point that was ridiculous and i just...
    kardi254552 kardi254552 41-45, F Aug 20, 2013

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    I Just Got Diagnosed 2 Days Ago

    My doctor diagnosed me 2 days ago. He didn't even really go into what this was I googled it but how serious is this? It's in the joint of my big tie, it's really painful next step is a mri
    Tagwn Tagwn 36-40, F 1 Response Nov 3, 2012

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    I Think It's Op Number 9?

    In truth I've lost count. I'm 50 and was diagnosed when I was about 31. I've had my right knee cap removed and my left one is plastic. I actually lasted about 9 years between the first op and the second and since then must be an op every 2-4 year's. The worst was 2004, I think it...
    thegeyser thegeyser 46-50, M 1 Response Sep 3, 2012

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    Really Scared Now :o(

    Oh my God, I thought this was just doctor speak for a gammy knee!!! I really wish I hadn't found this experience group. Ignorance is bliss :o(   :o(My knee problems first started when I saw a spider in the shower, I have a phobia so I shot out of the shower at such speed I...
    RobertaSunset RobertaSunset 36-40, F 5 Responses Apr 18, 2012

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    My mom is 60 years old now.

    When she is 45 years old, she was diagnosed PVNS by doctors.during that time we don't really know how serious the disease is. When the doctor told my mum need surgery in order to cut off the PVNS. My mum followed the doctor to do the surgery. Unluckily, after one year , the knee...
    Selinafu Selinafu 31-35, F 1 Response Feb 13

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    Bexta 19

    Hi all ,my names becky.19. Suffered very bendy joints all my life ,diagnosed with hyper mobility syndrome when toddler,also suffered bowel and bladder dynsfunction and kidney reflux with constant scarring from uti's. Born by c-section with complications,also suffer from epilepsy...
    m3vfa m3vfa 18-21 1 Response May 27, 2010

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    I Have Pigmented Villonodular Synovitis

    HI IM 28 FEMALE GOT PVNS SINCE 2007 AND NOW MAY 21, 2012 IT WAS REMOVE BY RIGHT KNEE ARTRHOTOMY ....  ITS REALLY HARD TO GET SICK.. I DONT KNOW WHAT NEXT TREATMENT I NEED... BUT MY RIGHT KNEE STILL NOT MOVING..... HOW MANY TIME DO I NEED TO GO IN PHYSICAL THERAPIST AND HOW MANY...
    osang110483 osang110483 26-30 Jun 3, 2012

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    21 Year Old With PVNS

    So, my story is strange, at least I think it's strange. It all started when I went to the emergency room the day before I had to leave for college. They gave me an X ray and a muscle relaxer and sent me on my way. Later on I got the X-Ray back and they found nothing. Three years...
    Midmenj Midmenj 22-25 Jul 16, 2013

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    Having One Of Those Days

    Hello , I am having one of those days today i am in terrible pain , i have a cortisone injection tomorrow not really looking forward to it . I am in so much pain i barely can walk , i don't know if to lift my foot up keep it down , how to position it to feel better . I am taking...
    Christine8 Christine8 22-25, F 1 Response Oct 31, 2012

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    Gotta Love The Health Lottery

    Like the other folks here, I've been diagnosed with pigmented villonodular synovitis. I have the diffuse version, yay me. Had arthroscopic about a year and a half ago, after several years of dismissal by physicians who all but told me to quit faking and get back to work. The...
    twisterjester twisterjester 51-55 Feb 8, 2013

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    This Isn't A Very Big Club, But An Important One

    I am 43yrs old and PVNS got me in my mid twenties, I can not count how many times I got a needle in my knee, or how many flare ups...I had three surgeries they just seem to buy me time, my last on lasted almost six years, I feel lucky because I was very active in those years mtn...
    jamiealexis jamiealexis 41-45, F 3 Responses Nov 25, 2009

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    Tays Namma

    Hello, I came to this site looking for some sort of answers. Please let me tell you our story..My little Grand daughter that is 2 years old has just been DX with PVNS and I am just so lost. She had knee swelling and has trouble walking in first thing in the mornings but was...
    belcourtkathy belcourtkathy 46-50 4 Responses Mar 17, 2012

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    Just Found Out.

    Hello all, I just recently found out that I have PVNS. I use to be a runner and how I found out was during a run when suddenly my knee just gave out on me and swelled like a ball on. I usually would ice it then walk it off but something was unusual about this instance. I went to...
    g0dsmack82 g0dsmack82 31-35, M Sep 7, 2013

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    Study Treatment PVNS With Nilotinib

    Hi all. I'm from Sydney, Vietnames original, i found pvns two years ago by Doctor Quang Dao and then he refer to Dr Richard Boyle at RPA Hospital, i should be operation in last year but Dr asked do i want to trial a new drug with project PVNS study, at moment i'm in one of 50...
    Andyta Andyta 41-45, M 2 Responses Jul 2, 2012

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    Four Years Of Pain

    Hello! I have had PVNS for four years. I habe extra articular PVNS, which is extremly diffixult to treat with a recurrance rate of 63%. I have had three surgeries, with my last one in january and i feel it is back already. I just dont know what to do. I can not get surgery again...
    ecrea280 ecrea280 22-25, F 2 Responses Nov 24, 2013

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    Recurrent Pvns, Radiation the Best Option?

    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...
    ecogirl22 ecogirl22 26-30 5 Responses Nov 13, 2008

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    Pvns Right Knee

    Hi all, I am a 36 year old female from BC Canada, I have had PVNS in my right knee since 2007. I have had 2 surgeries,one arthroscopic and one open. The last one in 2010 I had a tumor removed from my leg, I still have a tumor in my tibia(The doctor said he would have had to...
    sunflowerpj sunflowerpj 36-40, F 1 Response May 17, 2013

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    Pvns For 30 Years But Still Very Active

    I was diagnosed with right knee diffused PVNS when I was 24. I had the usual open knee synovectomy after some investigations, and a biopsy under arthroscopy. It was a big operation and I was. Hospital for just under 4 weeks and the loads of follow up including a manipulation...
    Johnjstewart Johnjstewart 51-55, M 1 Response Mar 21, 2013

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    Natural Help For Pvns

    There is a lot of doom and gloom on these threads and it's pretty scary getting diagnosed with this. There isn't a lot written about PVNS so I've been researching into possible ways that we can help ourselves naturally. I have started supplementing my diet and I do feel a huge...
    RobertaSunset RobertaSunset 36-40, F 7 Responses May 9, 2012

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    Pvns

    My name is Nathan. I am fourteen years old and I live in Minnesota. I was diagnosed with PVNS when I was twelve and the youngest case that the Mayo Clinic has ever seen. I am in sports but my left knee (the knee with PVNS) pain and I am not able to perform quite as well as I did...
    egnal1996 egnal1996 13-15 2 Responses Dec 13, 2010

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    Pvns

    Hi all, just been diagnosed with PVNS in my left knee. Had a knee arthroscopy 2 days ago surgeon found the disease to by widespread across the knee, the tissue in the knee appeared like lots of tentacles and 3 tumours were found at the back of the knee. Next step is radiation...
    Russell1986 Russell1986 26-30, M Mar 7, 2013

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    Second Time....

    Hi....  my story of my PVNS...I am a 48 year old female....Most of the people I am reading about seem to be quite a bit younger...any more older individuals out there?     Left knee...second time around! I first discovered I had pvns October 2010. At first they thought I...
    rakdak2010 rakdak2010 46-50 3 Responses Sep 14, 2011

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    Did Anyone Try Apis Mellifica or Bryonia Alba?

    Or any other homeopathic remedies? I'm not sure.... sounds a bit like crack pot medicine to me but my husband swears by arnica. Pain today is making me feel so tired and sick and my knee looks pretty much like a tree trunk :o( 
    RobertaSunset RobertaSunset 36-40, F 2 Responses Mar 18, 2013

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    Pvns Right Shoulder

    Hi everyone, I am 27 y/o, female, Filipino-American, diagnosed with PVNS last Monday, November 26, 2012. My PVNS is of the right shoulder and is considered diffuse and benign at this time. It was diagnosed via ultrasound guided biopsy. A large bump in my shoulder was first...
    jacsd jacsd 26-30, F Dec 6, 2012

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    I had synovectomy to remove a PVNS tumor in my

    left ankle in Dec. 2010. Since then I have been able to return to a normal, sports active, life. However, I feel it has returned, as I can see a lump, am experiencing increasing pain and stiffness, etc. I take reishi mushrooms daily and will start a course of Lion's Mane...
    WillieStiltz WillieStiltz 31-35, M Feb 16

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    My Misery

    I am 26 years old and have been diagnosed with PVNS in my left hip for the last 5 years. I remember the symptoms started back when I was 14 years old. I had my first synovectomy in 2005 at the age of 21 and my second at age 24. I reached a point after my last surgery that there...
    brighteyez116 brighteyez116 26-30, F 2 Responses Aug 2, 2010

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    My Name Is Heidi And I Have Pvns.

    i started showing symptoms in sixth grade. i got home and my mother noticed my knee was swollen but i didnt even notice till she pointed it out. not very body conscious i guess. that's when it kicked in though. i had depression and no friends at the time so dealing with having a...
    dolllface dolllface 18-21, F 2 Responses Dec 20, 2012

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    Knees

    be kind to your knees, you'll miss them when they're gone. i also have this cr@p :( I HAVE SURGERY SOON, looking forward to the anesthetic though mwahahahaa
    chappycoochops chappycoochops 26-30, M Jul 19, 2012

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    Pvns

    Hello, I am a 16 year old female, and i was diagnosed with PVNS a week or so ago. I was wondering if it has affected your life a lot? I don't know much about this disease, and it doesn't seem like many people do. I know it can be aggressive though. I have PVNS in my left knee...
    mnmiller15 mnmiller15 16-17 6 Responses Jan 21, 2011

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    PVNS - Starting Gleevec - Has Anyone Else Tried This

    Hi everyone! I was diagnosed with LPVNS in April of 2013 in my right knee, the tumor was surgically removed in late May and 5 short months later it is back, same place, slightly larger. I am working with the local cancer institute and they have decided to try Gleevec, a...
    julieegbest julieegbest 31-35, F Oct 23, 2013

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    P.V.N.S.

      HI m name is Natalie and I am ten. I was diagnosed with PVNS IN 2007. It has been a merry go round since then. The doctors first thought it was limes disease but it was not. They kept naming different things and diseases but it every test came out...
    lfennema lfennema 41-45 3 Responses Jun 25, 2009

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    Pvns?

    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...
    rellis91 rellis91 36-40, F 4 Responses Nov 6, 2009

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    I am 69 years old, living in Devon England,

    and in July 2013 I went into hospital to have a total knee replacement, as I had no cartilage and bone damage due to injuries over the years. When opened up I was found to have diffuse PVNS which required total synovectomy as well as a new knee. Recovery has been slow and...
    kingsmead kingsmead 66-70, M 1 Response Feb 5

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    Pvns Has Changed My Life

    Well I too have PVNS and my Doc said I have the worst they have seen.  I have had swelling in my knee for over 10 years and the Doctor at that time said I had a cartilage tear and there was nothing he could do.  Well painful years pasted and  my general Doctor during a...
    bowhuntertw bowhuntertw 41-45 7 Responses May 16, 2011

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    Pvns ? You Couldn't Make This Disease Up.

    Hi Simon here, 45, diagnosed 4 weeks ago, had an arthroscopic synovectomy last Monday.. Went well, up and walking. I normally post on the facebook group 'pvns is pants'.. I guess I'm looking to find a source of information in the UK as it seems there's a lot of 'suck it and see...
    simonjulie simonjulie 41 2 Responses Aug 14, 2010

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    Recent Arthroscopy

    I have just been diagnosed with localised PVS following an arthroscopy 4 weeks ago. I had a lump growing just above my kneecap which made it difficult to kneel down. I have struggled with swelling and stiffness following the arthroscopy and I'm wondering (having now read a bit...
    SarahPickard SarahPickard 36-40, F 1 Response Dec 7, 2012

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    My Pvns Story

    Hello, I am a 38 now, diagnosed with PVNC three years ago in my right hip. The pain got so bad so fast back then that I had to have total hip replacement. Had the Depue metal on metal joint "installed" three years ago and have had no isues what so ever since the surgery. I have...
    jpasiut jpasiut 36-40 May 28, 2011

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    Diagnosed With Pvns Today.

    After 3 MRI scans, 3 specialists visits, a biopsy and an arthroscopy I have finally been diagnosed with it PVNS. Cannot emphasise enough how disappointed I am right now. The only thing I'm thankful for is that I don't appear to be having as much trouble as some people on here. I...
    focus888 focus888 26-30 3 Responses Jul 25, 2012

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    Pain And Pvns

    My knee got swollen around two weeks before my 18th birthday. It took around one and a half years and one uncessary surgery (due to a wrong diagnose) until I found a doctor who knew about pvns and ultimately diagnosed me with this disease and even introduced me to a specialist...
    symine symine 26-30, F 1 Response Mar 11, 2013

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    Pvns!

    21 years old and i have pvns in my left knee since feb 2009. I've had a knee arthroscopy in Jan 2010 to get rid  pvns and the cysts in the back of my knee ... recovery was fine but the doctor noticed that after surgery knee was worse off. Then in april 2010 started radiation for...
    sayd2009 sayd2009 18-21 4 Responses Oct 24, 2011

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    Who Are The Expert Doctors?

    My 6 year old daughter was just diagnosed with PVNS in her knee. Surgery is scheduled here in Atlanta for Dec 16th, but I'm not sure I trust this doctor. Can anyone tell me if there is any doctor anywhere in the US that specializes in this rare condition?
    beisaacs beisaacs 41-45, F Nov 24, 2013

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    Diagnosis D-day

    I just found out today that I have PVNS in my right knee. I have been dealing with severe swelling yet mild pain for the past seven months and now I have an answer. On February 6, 2012, I had arthroscopy surgery to shave down the inflammation and have a biopsy taken. Just over a...
    flapsnapski flapsnapski 41-45 1 Response Feb 14, 2012

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    My Pain, My Life, My Sport.

    I'm spanish 40 years old and I have PVNS in my left ankle. I perfectly know why is due (in my case)...I love sports and I had lots of problems with that ankle when I was young due to a very bad treatment (probably my own fault). I had a terrible ankle sprain when I was playing...
    berbiquin berbiquin 36-40, M 3 Responses Aug 2, 2010

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    Painful Pvns

    I am 33 years old and currently trying to tough this horrible disease out. I was officially diagnosed at age 20 with PVNS. To date I have underwent 12 surgeries as a direct result of this disease. I have had to have 3 ACL repairs, one of which they had to ***** my hamstrings to...
    meghan79 meghan79 31-35 2 Responses May 9, 2012

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    Have Pvns But Still Able To Walk

    33 years old and i have pvns in my left knee since 2008. I've had a knee open synovectomy in 2009 to get rid pvns and the cysts at the left side of my knee ... recovery is good and able to walk and work..Recovery around 90% from normal till now 2013 no major issue from this...
    mosfar mosfar 31-35 2 Responses May 12, 2013

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    Pvns, But Surgeon Says Don't Need Surgery (yet)??

      I was just diagnosed with PVNS. I have been asymptomatic till now aside from a slight swelling in my ankle I've had for more than 5 years that I never thought twice about as it didn't bother me. Then suddenly last week I was sitting and became immobile. Unable to ben...
    zuma1 zuma1 31-35, F 7 Responses Mar 18, 2010

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    Another With Pvns

    I'm a 23 year old female and had my PVNS diagnosed just a few months ago after having an MRI on my right knee with a gadolinium injection, the tumor situated under the central patella.  I underwent my open excisional biopsy six days ago. I could not bear weight for a couple...
    AshleighNicole AshleighNicole 22-25 2 Responses Feb 21, 2011

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    Half Full

    My name is Sandra and i have this for seven years now.After 4 operations and other treatments my cancer doctor looked at me and said" we can't help you anymore, you know your bucket is half full and you must deal with it ". When did doctors become so cold?Thanks for the advice...
    deleted deleted 26-30 1 Response Jul 26, 2012

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