Welcome to my PVNS Experience Blog
**AIRHORNS**
I am assuming you are here because you have PVNS, but incase you are a friend or loved one who knows someone with the disease (or someone who was just diagnosed, here is a brief summary of what it is and why I am here.
Please keep in mind I am not a doctor nor a scientist. I am just a girl with PVNS in my left knee, awaiting surgery and trying to turn my anxiety about the situation into a helpful resource or center for people experiencing the same thing. Also, as an artist, I wish to share some art, along the way. As some of you may or may not have experienced, recovery from a synovectomy or just inflammation in general can take quite some time
PVNS stands for Pigmented Villonodular Synovitis, it's a mouth full I know.
To give a simple description I would say this: You got tumors in your joints, YAY.
Causes: No one really knows, it is very rare, we are talking 1 in 1.8 MILLION. Yes, congrats you are very special. I have been told it CAN be encouraged from a trauma in the joint. My super hippie Chiropractor seems to agree.
Treatment: Surgery, Surgery, Physical Therapy, anti - inflammatory drugs, and More Surgery. reoccurrence rate is about 50/50. However I have found it very hard to find success stories out there. I know they are out there, but with anyone who fights and beats a disease they just want to move on.
-Radiation-
There have been instances where people will receive radiation to kill the tumors. Sometimes successful, sometimes not. When I asked about this option, I was told that sometimes the radiation is more destructive to the knee then the actual tumors.
-Joint Replacement-
Joint Replacement is also sometimes offered when the destruction to the knee is so severe the joint is rendered useless and pain cannot be managed. When I asked about this option when we found my second round of tumors, I was told I was "Too Young" for a TKR. My doctor said, "The younger you get a Knee Replacement, the higher the risk you run for later amputation". This was crazy to me. Especially since I had never even thought of the A word. It was scary and it really forced me to realize that this MIGHT just be something that I'll live with for the rest of my life....which leads to the very last resort of treatments...
-Amputation-
There are cases in which the patients will opt for amputation (THIS IS RARE!) People who have it really bad and are left with little or no cartilage, after 20 even sometimes 30 surgeries and failed joint replacemnts, just get rid of the joint.
Here are some cases where people made this choice:
http://m.thetimes-tribune.com/lifestyles/woman-chooses-amputation-and-prosthetic-leg-as-path-to-pain-free-living-1.1477928
https://www.facebook.com/pages/The-Last-Adventures-of-Joes-Left-Foot/699664733412590?fref=ts
- Nutrition -
There have also been studies that have been done for Cancer tumors in nutrition: http://www.ted.com/talks/william_li?language=en that MIGHT be beneficial to PVNS Patients.
Many other holistic and nutrition approaches can be looked into as well.
Support: There isn't an extensive amount of info out there on this disease but I feel like since my first surgery in 2013 there have a lot more resources out there. One of my favorites is this PVNS facebook group: https://www.facebook.com/groups/91851410592/
Unlike, a blog, if you are part of this group you will get pinged when someone asks a question. Everyone is superhelpful and it's good to feel a sense of community, since this disease is so rare, it's nice to be reminded, YOU ARE NOT ALONE. <3
I know a lot of other groups exist out there, I just haven't come across them yet. Please feel free to message/comment and I'd love to share with the world.
That's it for now. I am scheduled for surgery on 10/5 (second surgery, first was in 2013) and I am going to do my best to:
1) Document recovery time and stages of post-surgery care
2) Create interesting and weird art
Stay tuned!!!
-Rebecca
Hi rebecca
ReplyDeleteWat's new?
Thanks for this post. I was just diagnosed and its in my left elbow which is even more rare. So special I am! Anyways, wondering if you are seeing or have seen an oncologist for this?
ReplyDeleteHi Rebecca, my name is Rebecca as well. I was diagnosed in May 2018 with another rare synovial disease but then told in June I had PVNS. First biopsy couldnt confirm but second biopsy of the actual tumor and synovial confirmed PVNS. I had my surgery almost two months later and because my knee was stuck in a 20-30 degree bend and I couldn’t really walk on it my quad atrophied. I go
ReplyDeleteto PT twice a week and am always having the worst pain. No meds help:( I’m still on crutches and can hardly ever get a good nights rest because the circulation is not the best and I wake up because of sharp pains. It hurts to straighten it all the way and I can only bend to 80 degree and it’s been 5 wks since surgery. I am saddened to hear how many surgeries everyone is having. I just pray for strength because I didn’t like the first surgery. Nice to see there are other people who understand. Thanks for sharing your story.
Hey guys my name is Ryan I have pnvs in my foot had large tumour removed from midfoot in 2014 have just had a midfoot fusion 6weeks ago and they found more tumours in the sole of my foot and around the midfoot area
ReplyDeleteHi ryan from what I have heard it's extremely rare to get PVNS in your foot. How big was your tumour and how much bone loss did you have? I was diagnosed in December last year with it in my navicular and have 10mm of bone eroded and tissue damage in the area. Surgeon doesn't want to operate because of where it is. Sorry to hear you have more - are they still the same thing - PVNS?
DeleteHello. My name is Mike. I was diagnosed with pvns in my right knee in 1993. Had 2 surgeries. In 1997 it came back surrounding the whole knee. Another surgery was preformed at mayo clinic in Rochester MN. They could not get it all. Now in 2018 I am left with extreme pain from arthritis. The doctors will still not do a knee replacement I am 42. My range of motion is not good. There are some days I can't move or walk without pain. Lots to tell about my story. Pvns the aftermath.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteHello.
ReplyDeleteI'm Thelma.
I first got diagnosed with PVNS in 2005. It was not bad but lost a little range of motion on knee.
In 2016, I had knee surgery for torn meniscus, bone fracture, and remove of PVNS. I was in horrible pain for 10 months, I lost lots of my range motion on knee, have bone spurs with severe arthritis and mu knee has lock because of it.
Can still walk, thankfully to the Lord for that, I work out at the gym every day for 30 minutes to an hour. But I'm in constant pain. 3 orthopedics have suggested knee replacement, one other said no, my primary doctor has said no.
I know later I will need it but in the mean time I can work, go to gym and workout and taking this disease and severe arthritis day by day.
We pray on day they find cure for all of us that have this chronic pain.
Hi Rebecca, I have just had my second round of surgery on my left knee for PVNS so I know how you are feeling.
ReplyDeleteHey, I was recently diagnosed with PVNS last month on October 23. Had the surgery before I even knew what was growing in my right knee. It was just this lump that was out of place (according to the MRI scans) and after a week from surgery, results came back diagnosing me with PVNS. It was weird because before everything I was told by other doctors it was a meniscus tear, so I was being walked through what a meniscus tear was, and procedure and recovery. But there was no way I was ready for the news I got. It was a slap in the face, and it was a lot to take in. I was being prepped for one thing, only to find out it was something way more serious and rare. So as of right now I'm going through recovery, and it feels weird. I'm still hesitant and scared of slipping or my right knee jerking cause I feel like my leg will just break in half .Lol, some say I'm overreacting but I know my body better than any one else. But yeah I'm still trying to wrap my head around this. It's nothing I was prepped for.
ReplyDeleteHi I’m Teresa
ReplyDeleteI’m afraid. I had rotator cuff surgery in March 2018 to fix massive tears in my left shoulder. After months of rehab for it I now have had a Ctr which showed complete tears of the infection- and supranational tendons. Most concerning to me is possible PVNS diffuse. Just need support from you. I’ll talk with doc this week. I’m close to Mayo Rochester. Help!
Teresa