I have always been a bit overweight and arthritis runs in the family, so I was no stranger to aches and pains. The youngest I remember feeling pain in my knee was when I worked at a Movie Theater back in 2008/2009. Being on my feet for 8 plus hours a day was extremely painful. I thought I was dying at the end of every night. I got an internship in LA at an office and I began the other struggle....SITTING ALL THE TIME. It wasn't until the summer of 2012 that I started experiencing pretty constant pain. I developed a crunching sensation and sound (very loud) anytime I went up stairs. I was working as a Post-Production Assistant and spent most my days driving around LA, lifting heavy craft service supplies, and walking all over tarnation to find office supplies and post-production gear needs. I was wearing a knee brace constantly, taking ibuprofen constantly (knee was always swollen) and was trying to swim a lot to rehab whatever was going on. I was exiting my car on an average day sometime in September 2012. I was parked at home on a drive way that had a very steep incline. I stepped out, put weight on my foot and when I pivoted to stand I felt one of the most painful sensation I have, had right below my knee cap. I fell to the ground and started balling immediately. It was scary. All I did was get out of my car. What the hell. I quickly made an appointment with a doctor. I had, and currently have Kaiser. This proved difficult. The next 2 months were filled with jumping through hoops and doctors and PT and imaging, never resulting in anything real. Here's how it went down: 1. Primary doctor Referred me to a knee specialist 2. Knee specialist Got me an x-ray 3. X-Ray was normal (WTF?) Referred me to a Physical Therapist 4. My first session was useless, the therapist could't even teach me moves and exercises to help because of pain Referred me to a sports orthopedic specialist (They thought it was Arthritis) 5. Sports orthopedic specialist ordered me an MRI I was at the Hollywood Museum of death on November 15th 2012 with my friend Joe. I was in the coffin room when I got the call. "Hi Rebecca, this is Doctor...., we finally got your MRI results and we are seeing a rather large, golf ball sized tumor under your knee cap, We are going to need to take it out, we believe it is something called PVNS"
I had no idea, at that point, they made me aware that there was no guarantee it was benign or not He set me up with an appointment on November 19th with a specialist orthopedic oncologist in Baldwin Park (Only person in Kaiser IN THE ENTIRE COUNTY) that deals with this kind of thing. In the meantime, I turned to Google. I was crushed, I was scared, I was angry. Drowning in web pages of sorrow and horror stories I was enveloped with a grim and negative outlook. It is very hard to find success stories out there, it's very disheartening. The tumors are not self contained, they latch on to tissue and bone and cartilage. As you can see in the MRI the tumor blobs up and behind the knee cap. This little marble sized blob carved a whole in the patella. It also went into the meniscus and ate away at the front end of it. My next blog will go into the surgery, treatment and some of the worst and most difficult days I have ever experienced. Thanks all! -Rebecca
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
