This is the PVNS story of May Everaert :
I was born in 1960, and I live in Belgium ( Europe)

At the age of 26 my left knee was beginning to swell, the doctor said it was fluid in the knee (Phlebitis).Only 3 years later we knew that it was Pigmented Villonodular Synovitis (PVS).

Visiting several doctors, the one said it could be cancer, the other one said maybe amputation was due,

I had the first 3 operations(open synovectomy)

1. Biopsy
2. Synovectomy of foreside of knee (4 hours)
3. " " backside " "(4 hours)

2 years later again the same as above!

2 years later the problems were worse: the bone was also destructed !

The orthopedic doctor I normally visited did not know what to do anymore, he wanted to get rid of us...I searched for another one.

I went to a professor at the University of Ghent, he did another operation:

1. He repaired the bone with donorbone
2. He removed the PVS as much as possible: operating time: 8 hours
3. After 1 month he gave an injection in the knee joint with radioactive Yttrium (radioactive metal that keeps radioactivity in the knee for about 2 days and destroys again the ill synovium 4.He repeated this injection the next 2 months.

The Yttrium really helped (in the knee joint), it slowed down the growth of the PVNS, I was "problem free" for 3 years, before it was only 1.5 years. But after that the PVS was recurrent, mostly in the back side of knee

I had another operation on 21-january-1997, without much results, only in the back side of the knee, the PVNS is spread around my knee and leg.

On Feb 1998 another operation at the back side of the knee, to remove most of it.

Another operation 24/April/2001 to remove recurrent PVNS tissue.

My surgeon took some pictures of the PVNS tissue and the MRI scan, you can look at them by clicking here (not suitable for sensitive viewers).

That's my story, I can still walk, bike, I lost some mobility. I have no pain, the biggest problem is that the disease keeps coming back and my knee is VERY swollen.

I think the Yttrium has done a good job, it really slowed down the disease. It is a radioactive substance that is injected in the knee joint and stays radioactive for 1 day, and destroys the synovium. I am also afraid of radiotherapy, that will be the last thing I will ever do. I think the best way to keep an eye on the PVNS is to have an MRI regularly, and if needed surgery (I hate that but it keeps me walking !)

That's my story, I hope it will give you a better idea of what this disease is. I hope a real cure for us all will come one day...I hope the webpage will show doctors that this disease is not so rare at all...

May