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Hi all,

Just had right knee arthroscopic surgery to remove a focal/local PVNS tumour.

Never heard of the dang little s%^$t until I got diagnosed with it myself. So I have decided to do some digging. I would LOVE to hear from anyone else who has heard of it, diagnosed it in their practice etc. Anything!! There doesn't seem to be a whole lot known about them.

Here goes my knowledge/experience so far....

There are two types of PVNS - local/focal nodes, and diffuse nodes which as the name suggests spread out all over the joint surface. It usually affects the hip or knee, but can be found in the shoulder, elbow, ankle, hand or foot too. There are no known causes, doesn't appear to be familial, but there are often histories of prior injuries.

In my case, I was diagnosed with OA in my right knee in early 2011. By the middle of last year 2013, my knee would lock up with excruciating pain when extended at least three or four times a week. Some swellling too, and a feeling of a pressure/burning from inside the knee joints itself. MRI in July 2014 revealed a 2cm cubed PVNS tumour that needed to come out.

It has been a literal pain to everyday life for the last year - lots of Panadol, anti-inflams, ice-packs, rest, elastic knee braces etc. Happy to finally have it excised early this week, and hopefully have a full recovery with no recurrences... (stay posted!!)

I joined a facebook supporters group called "PVNS is pants!" (silly name), and sufferers often have multiple surgeries as 25% of the tumours are in the habit of growing back...over and over again. Rather disconcerting, especially as PVNS can damage and entirely erode your joints, leading to needing replacements or amputation.

Seems from the FB page, that a LOT of sufferers who have had it in the foot/ankle - were seeing podiatrists who did not diagnose it. We are missing things through lack of awareness and knowledge here. I am attempting to formulate a list of questions for those FB sufferers with ankle PVNS to answer so that we podiatrists can have a clearer picture of what to suspect with PVNS when it comes to signs and symptoms.

Anyway - will attempt to attach a lovely photo of the inside of my knee, and I HOPE to hear from any of you with clients who have been diagnosed with this disease.

Here's Mr Google's version of it...
http://en.wikipedia.org/wiki/Pigmented_villonodular_synovitis

 

Oh, and here is one guy who couldn't stand it any longer and begged for a foot amputation. That's how annoying PVNS can be.

http://news.distractify.com/people/rightfooted-inspiring-amputation/

 

Here's the shot inside my right knee - before and after.

In the first shot - the forceps is holding the PVNS tumour.

The second shot - Voila!! it has gone... Magic thanks to the staff at Dandenong Hospital.

 

hi
I had a patient with ankle PVNS 20 years ago and wrote a small case study on it, she had a reoccurring lesion and O/ A association of the joint , she was in her early thirties at the time
you'll find the article in the nsw footprints magazine ......sorry cant remember year.

also Anthony Short wrote an article on this of much higher quality and that was in the national magazine .but at least 20 +years ago.
Good luck with your knee

 

Thanks dsfeet!

Will try to hunt that article of yours down, but don't like my chances if it was 20 years ago!
P.S. I will need to know your real name in order to look it up :)