PVNS: experience and causes

Hey Craig, Congrats on your "Brick" yesterday

Good luck to both you and Peter. Peter, I am reading 9 - 12 months without TKR so hang in there. But I do have a friend with TKR (but no PVNS) who is running again, so I hope you get to see the tennis court without a super long wait.

Will be interested to hear about what is causing the enlarged lymph nodes and low blood count.

Ursula

Surgery done. 7 hours long (cut right above ear, took skin and muscle off arm to cover whatever was damaged on side of head, etc). Guy feels just fine except 48 hrs. after surgery when they had him constipated on purpose and add barely walking...suked but now is like surgery never took place, wouldn't be for the scar you wouldn't know. Now here's the kicker: they let his wife stay with him for that week following surgery so I'm guessing having someone you know and truts next to you 24 hrs a day makes a difference...Nurses, docs, all decent, sure but I can't explain how come this guy scared stiff is going through recovery now like it was nothing serious...hell, I behaved worse after a tooth extraction...and I know how he was before surgery and how we were ready to ship him anywhere they would operate already hahahaha and now...now the guy is more relaxed than me. There is only one explanation: family member 24hrs next to him...ther eis no other explanation why someone could recover so fast.

(recovery here means everything from eating to activities to moods...the guy is simply normal!). My advise to you guys is don't worry about surgery, it will suck as they all do, just worry about recovery and WHO can stay with you. Be nhice to those you like, maybe they will return the favor and stay with you when you will need them most...right after surgery. I guess we are social animals...so plan ahead, be nice to anyone you like, just in case hahaahha. Surgery took place at Loyola and as much as I would like to find something to complain about...I liked the place, and how the whole process went. They let the wound open for a couple of days, did that "drain" thing you guys mention here done on the knees...Anyway maybe humans invest less in religious garbage and more in science because as of today nobody getting healed regardless of the prayers...sooner or later we will have to rely on the health care we have, oh, and on the relatives, told you how fast my brother-in-law healed...there is no other explanation for faster-than-normal healing.

Hi all, you have no idea what a relief it is to find a place with people who know what PVNS is besides my doctor. Well, okay, maybe you do.

I found out in a rather dramatic fashion that I had PVNS in my right knee a little over a year ago. I had to have surgery because the mass in my knee was apparently the size of a walnut and dislodging it made my knee swell up bigger than my upper thigh. 

I was fairly fortunate in that there was only about a two-day lag between the initial trip to the ER and the probable diagnosis, and I had to only wait about ten days for surgery. It was done on an outpatient basis, laparascopically, and confirmed by biopsy. I've known since before the surgery that I had a high probability of recurrence, especially since my surgeon told me it was diffuse and widespread inside my knee, despite the large size of the mass.

(On a side note, at my request, my surgeon gave me a DVD of the entire procedure. Once I got past a certain amount of queasiness, it was pretty fascinating. Your mileage may vary, of course, regarding your interest level in getting a look inside your own body.)

I don't know what triggered it. If it is triggered by knee injuries, I've had enough bicycle accidents and horseback riding spills to more than qualify, over the years. I just tell people I come from the shallow end of the gene pool and that no, I can't utilize photosynthesis or do anything remotely cool. I do know what made me aware of it in the first place: I dislodged the mass by flopping face-first onto my bed from a standing position one Sunday afternoon when I intended to lie down and take a nap, and ever-so-slightly hyperflexed my knee. It was swelling within minutes, and less than 24 hours later, I went to the emergency room, where they did an MRI.

I'm in my late thirties. I recovered fairly well from the surgery, did physical therapy, and have remained as active as I could. My surgeon advised me to do low-impact exercise, such as swimming, which I already really enjoy, so that makes it easier. 

What has started to concern me in the last few months, however, is that it might be recurring. Both of my knees are stiff. I've lost mobility in my right knee that I had regained with physical therapy. What I'm wondering is if anyone here has gone through radiation therapy for this, and if so, what was it like, how long did it last, was it successful...and what were the side-effects. I know maybe it's kind of a dumb thing, in the grand scheme of things, to be worried about, but I've always been a little vain about my hair, and the only thing I know about radiation therapy is that people experience hair loss. I don't even know if that's true of targeted radiation treatments any longer, so I might be having a tempest in a teapot over that one.

I need to get an appointment with a surgeon again, and hope that with my medical history, my insurance will find it justifiable to pay for an MRI to check the other joints that I think may be affected, and recheck my right knee.

Anyway...it's really good to read about your experiences with this. Even my knee surgeon had only seen a couple of cases of PVNS in his entire career previously.

An update for those interested in this thread and my own ongoing experience with P.V.N.S...I'll keep this short and brief.. I've already explained about my surgery and recovery, 10 months back. And I think I mentioned that I'm in the unlucky 50% which has had P.V.N.S return and the doctors think it's going to be a long-term thing, and not likely to go away.

I'm only 42 and so a knee replacement is out of the question. The tumour in the back of my knee which was left in (because removing it was too risky due to the amount of nerves around it) has increased in size slightly since I last posted, and even in just the last 10 months since surgery. It's visible at the back of my knee when it's straight.

My movement is still good though, although I can't squat down for more than a few seconds, nor can walk long distances, cycle, run, or do anything physical with the joint which brings on much pain and stifness within a few hours.

The biggest challenge and problem I now have is pain. The pain I experienced pre-surgery before my diagnosis is gradually going back to how it was. A constant dull ache in the knee is ever present. On days when I'm done anything physical (even routine tasks like housework) the pain is more prominent. Sometimes I feel the pain in the night and it wakes me up frequently.

Normal painkillers don't work very well and I have to keep taking them every 3-4 hours which is not good for the liver. I've discussed this my Dr and all she offered me was opiates and Tramadol, neither of which I'm keen to go back on.

The one painkiller which works wonderfully well for me is Subutex (given to manage heroin withdrawal/addiction usually) however my GP refuses to prescribe it. I was able to try it for some months (don't ask how) and it worked wonderfully well for me for months, I was pain-free and my life was much

better. My Dr knows this, she refuses to prescribe it, saying it's unsuitable for long-term pain management, even though the GMC prescribing handbook says it can be.

I'm now in a very difficult situation and my life is not good being in constant pain, limited in what I can do, unable to have surgery to remove the tumour, and facing a very long wait for a knee replacement (I've been told, it won't be considered until I'm in my 50's).

I'm wondering what the future holds. This is a rare disease as you all know and not many people have been in this position. I've just been referred to a pain-management centre, and my Dr said they might prescribe Subutex or morphine (or stronger painkiller) patches.

Realistically though, how long can this go on, another decade? What if the tumour increases in size further? I'm wondering if I will lose my leg, else have an early knee replacement due to the exceptional circumstances.

Radiotherapy is one option they might re-consider in an effort to reduce the size of the tumour and stop its growth, but my doctors ruled that out at the hospital after treatment, and said they would monitor its size every 6 months.

My next appointment is in July.

 

I broke my right ankle several weeks ago and was using crutches. Two weeks after I started using them, I began having terrible pain on the inner side of my left knee that got VERY PAINFUL at night. I had to stop using cruthes but the pain in my knee continued to be bad and getting worse.  I finally went to an orthopedist who ordered an MRI.  The MRI report showed a mass on the lateral side of my knee...not where my pain was.  PVNS was mentioned as a possibility because "hypotense T1 and T2signal".  I was sent for bone scan and got the results yesterday.  The Dr. feels that since I don't have pain on the lateral side of my knee, it is an insignificant finding and gave me a steroid injection where I am experiencing the pain.  Today I still have some tenderness in the original spot, but am getting intermittent stabbing pain on top of my knee and still can't straighten my leg completely due some pulling in the back of my knee.  He said the shot may take up to 3 days to take affect and if I am not more comfortable by the weekend, I should follow up with an arthoscope.

Does this sound like PVNS to anyone?  

So I'd thought I'd write about my story. It's a little different than most of these other posts however. I'm only 16 with a mysterious tumor (growth) on the back on my right knee that I have yet to get an answer on. I'm hoping by posting my story someone has experienced something similar and can provide some insight. 

It started in November 2013. I was Black Friday shopping with some friends, and when I got home I noticed my (right) knee was a little sore. I didn't think much of it and figured it was just sore from walking around so much and thought it'd be better in a few days. After a few weeks (leading into months) the pain wasn't going away. It was very mild though and really only hurt when I kneeled down or bent my knee. Then it was about a month or two later I was walking up my basement stairs and my knee gave out on me and I hyper extended my knee. The pain was awful. I wasn't able to fully extend or bend my knee at all. I finally convinced my parents I needed to see a doctor because I was in tears from the pain.

The first doctor I saw did a physical examination on my knee and ordered an x-ray. The x-ray came back normal but he said upon physical examination my knee cap was loose and that I should RICE it (I've been keeping a brace on it since, which helps a lot with the pain).  

However, the my knee wasn't getting any better and I saw a second doctor, a joint specialist. He ordered an MRI (which turned into 2, one with contrast and one without, but I didn't get those done til a few weeks later). He also did a physical examination and suspected a torn meniscus.

After I got my second MRI done, I finally heard something back about my knee. It was a tumor (mass). I was in shock because I'm 16 years old and I'm not very active and hadn't had any trauma to my knee (prior to initial symptoms). Unfortunately though, the report didn't tell me what kind of tumor it was. However, it did have a short list of what it could be.They included two types of joint diseases, arthritis, and synovial sarcoma (cancer). PVNS was on there, but he said it didn't have the characteristics of it (hence why I'm on these forums to find out what the characteristics are). I also had a bakers cyst, a slight dislocation, small effusion, and a small medial plica. I had two other falls after my first one, mainly from my knee giving out on me, which is what I think caused those other things. 

The third doctor I saw, was a bone cancer specialist. I was hoping to finally get an answer from him. All he did was look over my MRIs and did a physical examination (I was very annoyed because I was hoping he could finally give me an answer). Thankfully though he said he doesn't think it's cancer, and that's it's most likely PVNS. He ordered I needed physical therapy (which I personally think won't help), and a biopsy, which was my choice.

I choose to do the biopsy, which was the worst thing ever, but I wanted an answer. I had an ultrasound guided biopsy done. The cancer doctor (and the radiologist who did my biopsy) both said that my tumor is in a very tricky location in the back of my knee. There were many things in the way and it was hard to get to which will make surgery difficult. 

It is now June of 2014 and I'm at a loss as to what this mysterious tumor could be. I got my biopsy done towards the end of May, and I have yet to hear anything back yet. Personally, I think either way, I'm going to need it removed, but I just want an answer.

 

My first encounter with PVNS was in 1980; I was diagnosed 34 years ago.  I believe that it initially started when I fell on an escalator in the summer of 1976; it took those 4 years to really "develop".  I had surgery; within 6 months, it was back.  After my second operation, I was told that I would need a total knee replacement.  I put that off as long as I could; however, I finally had the TKR in August, 2009.  I was okay for a few months, but  then developed synovial chondromatosis,  a disease very similar to PVNS.  In 2011, I fell on both knees on a wet floor.  To put it succinctly, my knee is a mess.  The prosthetic knee joint is fine; it actually never gets any use because I can't bend my left knee at all due to having dozens of inoperable PVNS-related tumours.

First of all, Morphix, thanks so much for your incredibly well written reports, even though scary but very useful. I really appreciate the time you took to type that all in, despite the physical and emotional pain we all go thru. Also a big thanks to all the other bloggers here.

My case is unfortunately very bad. I have diffuse and aggressive PVNS, so in my case I will need it all, a complete synovectomy, removal of all tumours, and more therapies... I just had a biopsy under general anesthesia as they had to go deep into the joint with a 7mm tube (similar to key hole surgery) which is very painful, hence it needed to be under GA. For anyone who will have to do that, dont worry, it is really not that bad. In my case it took a lot longer as planned (I woke up after 2,5 hours instead of 30 mins) but that was because the disease is so progressed and bad, in my particular case.

If you need to do GA CT Biopsy, it is a one day day case procedure, you can definitely go home in the evening, but you need to order a cab (I naively asked whether I can drive myself). When you wake up from GA you have only little pain and the pain is actually in the calf and and entire leg and not in the knee (I was told that is because of local anesthetic given after procdure to reduce pain). A couple of hours later the pain starts to kick in but as long as you rest on your hospital bed it is just like a pulled muscle. It is difficult to walk the first 24 h due to pain, but I managed to limp with just normal dose Ibuprofen. 48h later most leg pain is gone and I was back to my normal PVNS pain levels but have increased pain in the front of my knee where I was not operated, and that worries me a bit. For me the biopsy has definitely not improved symptoms at all, it made it all worse. So had I known that I would have asked whether biopsy can make symptoms and the disease worse, but too late now, it is done. I am waiting for results but they said it is 99.9% diffuse, aggressive PVNS. Thanks god it does not look like sarcoma, they sad.

It took 4 years to diagnose. I am a very sporty lady but had always pain when playing tennis and doing long cycle rides (above 70km). Also skiing had become a real pain, and as former ski instructor this was hard for me. For 4 years I was told I have nothing and that I am crazy athlet and that I should not put that much strain on my knees - I should do physio and go to the gym if I wanted to exercise that much. I did everything, physio, personal trainer in gym, yoga, normal cycling (10m and less to work), but it just made it all worse. There was a time when I hated my physio as he made it worse (poor guy, if only he knew he is pressing on tumours...). My tumour in the back was always diagnosed as a baker cyst and noone believed why it was so painful. Well I came to terms and confessed to be a hypochonder (malade imaginaire)  until after an intense tennis session with my coach abroad I nearly collapsed on court due to pain. My knee got to the size of a football the day after and even icing did not help. I rushed to an emergency scan in a private clinic abroad and they said I urgently need to see a knee specialist. I went to a UK sports knee specialist who then referred me to the PVNS specialist tumour consultant I have now. 

I will keep you guys posted, so far it is worrying and I am so glad to have your insights. Look forward to reading your updates on how you are all doing. I am a bit of an athlet (need to sit in an office 12h a day...) and I need my sport for mental wellbeing I go crazy as a reptile

I am seriously worried about all the pain and long recovery as my consultants both warned me about how bad it will be (when  told them that I dont like Ibuprofen as it kills my stomach he laughed and said, no you will need a lot more than that, he meant Morphium...)

I am a 21 yeard old female and I would like to share my story as well. I do not live in the UK by the way.

In May of 2013, I woke up one morning with stiffness. I didn't think too much of it at the time as I assumed that I probably pulled a muscle. The stiffness continued throughout the day. I was wearing sweatpants all day as it was a lazy day for me. That night I took a shower and I was about to shave my leg, I noticed my left knee was engorged and swollen. I freaked out a little and was I shocked! That explained all the stiffness! I immediately went to my dad and showed him. He didn't think that it was a big deal, saying that his knee and other body parts swell up all the time. He is also a big gout sufferer. He said just to relax and it should go down in a week or two. Almost a month went by and no change in sight. I wanted to see a doctor because I knew that something wasn't right. There was no pain really, just limited range of motion and swelling. This was a problem for me because my family and I didn't have health insurance, and paying for medical bills has always been a struggle for us.

I finally went to my local doctors. I was asked a bunch of questions, and the doctor was very clueless about me. He referred me to the orthopedics that day. The orthopedic took xrays and drained my knee. 60cc of dark bloody fluid came out and they sent it out for testing. I get a call a few days later that my xrays were normal and so was my bloodwork. I was getting worried, I just wanted to know what was wrong with me. The swelling came back a week and a half later. They asked me to come back. I was then told that I needed an MRI so I got a refferal for that. My doctor asked me if I wanted to drain my knee again, I said sure. It helped relieved the pressure a bit. Swelling was completely gone, horray! 5 minutes later I got up to the counter to pay for my visit, and as I looked down at my knee, it was completely swollen again. I panicked and I showed the lady at the desk. The look on her face was shocking, she pointed to my doctors office down the hallway to go speak to him. He told me that it was from the corticoidsteroid shot and that it should go back down that day. It never did.

3 months go by and I finally go to my MRI appointment. MRI's are not cheap so thats why I waited to get one. A week after, my doctors asks me to come in to discuss the results. He finally comes into the room and tells me that I have PVNS. The look on my face was so dumbfounded. He went into little details and recommended that I need surgery. He left me with no direction on where to go to next. He knew I didn't have insurance and didn't wanna deal with me. I went to my car afterwards and cried. I didn't have the money for surgery. I just didn't know what to do. Never went back to that doctor.

A few more months go by and I finally got insurance. Pain was more noticeable now, sharp throbbing, heat, burning, instability, locking, popping, etc.. So I went to a highly-appraised orthopedic surgeon. I heard nothing but good stories from him. During that visit, I gave him my old MRI's and xrays. I was asked to have another xray in the office, to see if anything changed to my bones. No changes in bone luckily. He confirmed the diagnoses of PVNS. From the looks of the MRI, he said that it appears to be localized. But can't be for absolute sure until you go in there and see. We went through the paperwork for a synovectomy through arthoscope. I was so relieved to move forward now.

Two months ago I had surgery . I was told that it was gonna be a 45 minute procedure. Rolled me in, gave me the drugs, knocked out. I remember waking up completely dazed, blurred vision, exreme discomfort. My surgeon came in and said that the surgery went well. It ended up taking a lot longer than expected, a little more than 2 hours in the OR. He said that he found the pvns in every nook and cranny. Therefore, it was diffused. Incredibly he got 99 percent of it out and told me that my chances of it coming back are 45 percent. I was given a prescription of 5/325 Norcos. Very strong stuff for me. I've never taken painkillers before then. I took my dressing off after 2 days and saw the results. Knee was blown like a balloon, but thats to be expected. 4 small horizontal incisions just a little below the the knee cap going around. I used crutches to get around just 4 days post op, then I was putting full weight on. I was feeling okay.

My post op visit was 13 days after surgery. I went into the office to get my sutures removed. He showed me the grossest pictures of inside my knee. It looked exactly like a sea anemone. He also told me that I had the most severe case of PVNS he has ever seen. And he's seen many PVNS patients before me. I was still very swollen, so he put me on a 3 months supply of Lodine and scheduled me for PT.

So as of today I am 10 weeks post op, the swelling has gone down just a fraction unfortunately. PT is going great and has helped tremendously with gaining my strength back. However, my symptoms are coming back worse and stronger. They resemble the PVNS. Burning, instability, swelling, heat, locking, the whole nine yards. I was told that this is just everything healing. I find that hard to believe though. The medicine I was put on doesn't do anything I feel. It's supposed to help with pain and swelling, but I'm not feeling any relief. On days when my pain is unbearable when I'm on my feet at work, I take my leftover Norcos. That's the only relief I get, even if it's for a few hours. I fear that the PVNS has already returned...

I see my doctor in a couple weeks for another follow up, Hopefully I can get an MRI to see what's going on in there. But the scarred tissue may give a false reading. We'll see what happens next.

I wish everyone goodluck. This disease shouldn't defeat us. It's important to find strength and support from loved ones. Honestly, that's what got me through it. Best wishes and speedy recovery to you all!

Hello! My symptoms of PVNS started when I was 18. I had no prior injury and was not taking medications. One day I was fine, the next day my knee was hurting and starting to swell. I walked appx. 4 miles a day between classes and work, and was on my feet at work about 6 hours straight 5 days a week, so I attributed the pain and swelling to this. It did not go away, however.

I did not have health insurance so it was two years before I could see a doctor and then another year before it was diagnosed correctly. I had two surgeries within 1 1/2 months, and after about 20 weeks of recovery it was like my knee was brand new. My surgeon recommended to me that I never try running, no matter how good I feel, and like I dummy I ignored him. I decided to start training about 18 months after I was fully recovered and within two weeks the PVNS had fully recurred. I now have an 11-month-old son, a military husband, and nobody to assist me while I'm recovering, so surgery is completely out of the question. I have constant pain and aching that radiates throughout my right leg, extreme stiffness, very limited range of motion, and the joint feels almost too weak to bear weight. I am trying to work my knee to keep whatever flexibility I can, and hoping that the joint does not freeze up.

I have yet to find any kind of medication that helps with either the pain or the swelling. Icing does not do anything either. My experience has been that my knee will flare up and the symptoms will be extremely bad, and then after about 2 weeks it will reduce enough that the joint is usable again. I am hoping that this flare up follows the same pattern, but my biggest worry is that the joint will freeze up.

Mine is not the happiest story, but I definitely hope to be able to have surgery again at some point because the 18 months I had with no symptoms were wonderful!

I have had two surgeries so far on my left knee. The first surgery was the keyhole surgery. I had it done February 1 2012. Within 5 months it returned. I had my second surgery September 11 2013 which was open surgery. My orthopedic surgeon went in from the top of the knee and also on the right side of my left knee. And again it has returned. I found out about it when I fell at work and had an X Ray and than an MRI. I haven't been on any medicine for long periods but I feel there is nothing else except surgery after surgery. Has yours come back. 

Thank you