My experience with Pigmented Villonodular Synovitis – PVNS

The Symptoms

It was late in 2012, I felt that my knee cap was moving out of place occasionally when I walked. This started happening frequently. One morning when I woke up I felt a sharp pain on my right knee just below the knee cap towards the left side. The pain subsided in about 10 minutes after a vigorous rub to the affected area. I walked normally that day. A couple days later, I was working in my office. When I got up from my chair, I felt a sharp and terrible pain on my right knee and it was as though my knee was giving away and my leg would collapse in the wrong direction. I rushed home and scheduled an appointment with the local doctor for the next day. I biked back home and walked to the clinic which was two streets away from home. I had pain all the while I walked and it turned unbearable on my way back. However, I was able to bike more than comfortably. When I was back home, I noticed that there was a huge swelling on top my right knee.

First visit to the doctor

I visited the doctor the next day. He performed some tests to diagnose the condition of my knee. He said my knee was stable,  but wasn’t sure what caused the pain and the swelling. He wanted me to wait for a couple of days to see if the swelling subsided. He also advised me to take pain killers if that helped reduce pain.

Second visit to the doctor

I visited the doctor again in a couple of days. In the meantime I researched online to find ways to reduce pain. I started applying ice packs and kept my leg raised over a pillow. The ice pack only stiffened my knee. I continued with it for a while to help any internal injury to heal. On my second visit, the doctor still wasn’t sure about the reason for the swelling and the pain. So he suggested I go for an X Ray and Ultrasound scan of the affected area.

After a wait of about a week, I had my X Ray and Ultrasound done. Five days later, I visited the doctor again to learn about the results.

Third visit to the doctor

Fortunately, the X Ray was normal and there was no damage to the bones. The Ultrasound said there was lot of fluid, but was inconclusive on the cause of pain. The doctor advised me to go for an MRI scan. I had to wait for about 2 weeks to get my MRI done.

First MRI Results

A week after the MRI, my doctor called me to discuss the MRI results. He told me that I had a rare disease called Pigmented Villonodular Synovitis (PVNS). He told me not to worry as the tumor was benign and not malignant and also it was localized and was not going to spread like cancer. He also suggested I go in for another MRI, this time with a contrast agent injected, so that he can confirm PVNS. He also fixed up an appointment with a Orthopedic specialist.

Second MRI Results and Ortho Visit

Ten days after my second MRI, I visited the specialist. He told me that PVNS was confirmed and it has to be treated with surgery. The size of the tumor was 9.4 x 15 x 17mm and it was present behind Hoffa’s fat pad. He also told me that the causes for the disease were unknown and hence no medication exists. He suggested I go in for an open synovectomy and advised that I do it as quickly as possible. This is what the second MRI report said

The mass in the joint of the dorsal fat pad of Hoffa shows hemosiderin artifacts and there is strong staining of the synovium of the knee. The image fits best with PVNS

MRI showing localized PVNS on right knee

MRI showing localized PVNS on right knee

I was living abroad and working on a contract. It was impossible for me to take a month off and go in for surgery. So, I decided to wait and review the condition after I return home.

Nine months later…

Nine months later, I returned to my home country and headed straight to hospital. I must mention that in these 9 months, I had no great pain but slight discomfort for a couple of times which lasted for about 4 – 5 days. The doctor had a look and ordered an MRI. The MRI report came in the same afternoon and the existence of the lesion and PVNS was confirmed. Luckily, it had not grown much and the size remained almost the same. The size mentioned in this MRI was 1.4 x 0.7 cm. The report said

Small circumscribed hypo-intense lesion interposed between Hoffa’s fat pad and femoral condyle – suggestive of localized nodular synovitis (localized pigmented villonodular synovitis)

With that, I was recommended to go in for surgery to remove the lesion. A couple of days later, I underwent an arthroscopic procedure to remove the lesion and was out of hospital in two days.

Post surgical recovery and biopsy

The removed lesion was sent for biopsy as I recovered from surgery. Right after the surgery, my leg was swollen just above the knee. I was prescribed pain killers, antibiotics, anti platelets and some vitamin tablets. I was also advised to apply ice pack every 3 hours. My knee was stiff and applying ice pack only increased the stiffness. I was also asked to do some exercises to improve muscle strength and improve circulation.

Ten days later, I had the stitches removed. My leg is a still stiff but I have regained about 50% of my normal action and I am able to climb stairs with both legs with some support. The swelling and stiffness still persist. Keeping the leg raised has helped reduce the swelling to a large extent.

Meanwhile, the biopsy report has come in.

Thin layer of synovial lining cells and underlying Stroma with diffuse fibrosis. Scattered pigmented macrophages are seen. Giant cells or foamy macrophages are not present

When I went in for review, a surgeon raised the specter of PVNS turning to cancer. The earlier diagnosis clearly said that was not the case. The absence of giant cells in the biopsy report is another positive point. I am waiting for some questions to be answered and am also seeking second opinion in this regard. I will post and update once I have a confirmation.

There is not a lot of online literature on PVNS, let alone localized PVNS. I hope this helps someone who is looking for information or someone who has gone through localized PVNS to provide me tips on what I should watch out for. If someone has had localized PVNS and got it treated, I would like to know if there was a recurrence and how you feel after the treatment.


93 responses to “My experience with Pigmented Villonodular Synovitis – PVNS

  1. Thank you for sharing your story with us. I am also auffering from PVNS since last 3 years

  2. Hi Bala, hope you are well and in the best of health. Can you please let me know how your recovery was post the PVNS surgery and whether or not you had any further relapse of PVNS. I would really appreciate as my brother is due for a surgery in 4 to 5 weeks time.

  3. Thanks so much for your story! I was diagnosed yesterday and head into surgery in 4 weeks. Do you have any update?

  4. Hi, Bala
    I was diagnosed with pvns last two weeks and my situation similar to you, but my pvns is behind of my left knee. I really want to know after the surgery can we do exercise and slow running like before? I’m 26 and I can’t imagine life without the sport. Many thanks.

  5. Hi glad to see from the comments you recovered well, I’m in the UK and had pvns diagnosed behind my right knee, almost 2 weeks post operation I still have very little motion in my knee joint, I am wondering if you had similar issues or did you have full motion much quicker?

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