My Blog Begins

Hello Cyberworld! I am excited to start my blog.

I have recently been diagnosed with PVNS (pigmented villonodular synovitis),a rare condition, and decided that I would blog about it. The blog will allow my friends and family to follow my journey and maybe offer help to others that are being diagnosed. I hope the blog isn't completely about PVNS, but about me and how I get through this. (Though it would be interesting to hear from other PVNS patients!)

For those who don't know, PVNS is a rare condition that means that the lining of a joint, in my case my knee, becomes diseased and basically becomes a tumor, non-cancerous. The tumor grows and impacts a lot of things. Once diagnosed patients have surgery or sometimes surgeries to remove the tumor.

So far, my journey with PVNS has been going on for about two and a half years. I started having symptoms after I had lost a significant amount of weight. I was working out regularly at the gym and was in the best shape of my life. Over the course of this journey my activity level has been decreasing. My knee started swelling after I worked out and sometimes I got a sharp pain in my knee if I stepped on it wrong. It would bother me for a week or two and then I would get back to the gym and work out for a few days and it would flare up again.

I went to my dr. and was diagnosed with patella-femoral syndrome. (From the reading I have done patella femoral syndrome is one of the more common misdiagnoses.) I was sent to physical therapy for a while and the pain got worse. The physical therapists felt that they couldn't help me beyond giving me the exercises they had shown me. I kept trying to go back to the gym and incorporating my PT into my routine. My knee continued to have flare ups and I finally got a referral to go see an orthopedist, Oct. 2006.

He suspected a tear in the cartilage and sent me for an MRI. He read the MRI as inconclusive, while noticing what appeared to be blood pooling in my knee with no apparent cause. He still suspected a tear and following insurance protocols took the next step of giving me a cortizone injection. It did not help. I continued suffering with knee pain and was prescribed some pain killers. Some days my knee was so swollen that I could not bend it. It was excrutiating to walk around and daily tasks became more and more difficult.

In February of 2007 my doctor decided to send me for another MRI to see if the pictures would show more clearly what was going on. (The MRIs were not pleasant because of having to keep my knee in the same position for so long...OUCHIE!)

The second MRI offered no more information other than the blood was still pooling. At this point my doctor said that there was a small possibility that I had PVNS. (Between 1 and 5 people in a million have this condition.) However, he felt that it was very unlikely. Since the pain was still part of my daily life my doctor decided to do an exploratory surgery to see if he could find a cartilage tear and to take a biopsy of the lining of my knee.

I had surgery March 27, 2007. My doc found what he thought was scar tissue in my knee, perhaps from my days as an athlete, cleaned it up and took a piece of tissue from my knee to have biopsied.

The pathology report from the biopsy indicated PVNS. To be sure of what was going on my dr. wanted me to go to a rheumatologist. I went. They shoved a HUGE needle into my knee and withdrew a lot of fluid to use for tests. They ruled out a lot of things including Lyme disease, arthritis, and immuno difficiency conditions. While they ruled out a lot of things they could not conclusively tell me whether or not PVNS was my final diagnosis.

So my journey continued and I was referred to a doctor in Boston. This doctor is an expert on PVNS. I saw this doctor on Friday June 1st, 2007 and have been diagnosed, officially with PVNS. I will have a major surgery in July and the road to recovery will not be easy.

Thankfully I had two of the most amazing people in the world with me, two of my best friends. One of them came into the appointment with me for moral support. The appt. went well and I got a lot of my questions answered.

After leaving his office my friend and I got in the elevator and got ready to leave the hospital and I had to sit down. I broke down...crying. So much happened in that appointment and I felt so many things. I was surprised to hear that I will have two major incisions for the surgery, one in the front and another in the back. The amount of time and intensity of recovery is a little overwhelming. But I think that the thing that hit me hardest was a feeling of relief...

I was relieved that I have a diagnosis...I felt validated... knowing that this is something real...that it is not something that has been in my head. Don't get me wrong, the pain in my knee has been very very real, but after two and a half years of doctors not being able to tell me what was wrong I began wondering if maybe I was a little crazy.

So... I am not crazy...at least as far as my knee goes anyway. :-)

It has been a LONG road so far and I know the road ahead will also be hard. But I look forward to feeling better. Honestly, I don't remember what it feels like to feel good, physically.