This time the surgeon is going to kill some of the good cells to see if that keeps the PVNS from returning ever. By the looks of where the tumor regenerates, I suspect he means my tibia. I have a feeling that is going to be super painful. I say bring it. If it does the trick of keeping this nasty tenant I can't evict out of my knee then so be it.
This will be my third surgery in 4 years. At this point the tumor is wedged between my leg bones and I can definitely feel the shooting pain from the pressure. It feels like someone is trying to pry my leg bones apart. I definitely have a limp but I pull it off pretty well so far. Nobody can tell and are shocked when I tell them I'm about to have another surgery.
I went to Canada a few weeks ago. Cannabis isn't quite legal in Vancouver BC so I had to leave my THC at home. After about 24 hours I was feeling the pain in all of it's unmuted splendor. I had my CBD cream and kept rubbing that all over my knee. It helps but the combination is what really helps. Luckily I was only gone for 3 days.
This image is a side view of my right knee. My knee cap is pointed to the left of the image. You can see where the placed a white circular sticker the size of a dime under my knee cap. And just behind it where the tibia and the femur meet is the tumor which appears to be just slightly larger than the sticker in the image but now feels like it's past the size of a nickel.
At this point I'm having difficulty with getting my knee to bend and don't quite have a full range of motion. My knee pops often and I have shooting pains going up and down my leg. Deep aches or pulsating pains in different parts of my knee. I have a strange sensation on my foot where it feels heavy or that there is a strange pressure at the bottom of the ball of my foot.
I was going to wait until October to have my next surgery but a series of personal events made me reconsider. So, last week I called my surgeons office and let them know I'm ready. Today I booked my terrible vacation, I mean surgery, for April 9th.
I just found your blog. A radiologist took a look at my knee MRIs (both knees) and said that I have a PVNS tumor in one of them, synovial thickening in both. It started for me 8 years ago in my feet, super painful when walking, and then went into some of my finger joints. I thought it was fibromyalgia, so pursued different things related to that, including the Guaifenesin Protocol (GPm Nov 2016 until Dec 2017), and now the Low Oxalate Diet (LOD) since Nov 2017. My knees blew up the same month I started the GP and became really painful toward the end of 2017. In the past two months I've had a slow lessening of pain in my knees. What is notable to me is that my thumbs, which blew up overnight 4.5 years ago, have decreased in size significantly since going on the Low Oxalate Diet. Something to think about. I've heard NOTHING from any sites or doctors so far about diet/nutrition affecting my joints.
ReplyDeleteI have a surgical consult in a week and am leaning towards minimal surgical intervention, if possible. If PVNS comes back over and over, as it seems to, then I may as well do the minimum and see where the LOD takes me. Thanks for providing regular updates, and good luck on your next surgery.
This comment has been removed by the author.
ReplyDeletePardon my typos. I just realized that I was posting as "Unknown", as well. I'm a real person.
ReplyDeleteThank you Corey. I'm sorry you are suffering with so many joints being affected. I've tried sticking to an anti-enflamatory diet. But I love bread! And chocolate. And coffee. And I would rather live with PVNS than give those up.
ReplyDeleteI wish you the best. I've been determined to find a cause to my chronic pain and joint swelling for 8 years now. I would rather not go through multiple surgeries (I've seen some PVNS sufferers say they have gone through 20-30 surgeries!). I wish there were more research applied to the cause of PVNS.
ReplyDeleteI've given up chocolate--but I have not given up coffee. Coffee is low oxalate! I've definitely given up bread, but that was easy, since I've gone gluten free before for years.