PVNS Reaccurring 10th time...

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I am getting ready to have my 10th surgery in 32 years for diffuse PVNS of the right knee. Has anyone else had this many reacurrances?  And over what time frame have you had the disease? 

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18 Replies

  • Posted

    What exactly is it? And is what do they do? Xxx best luck. 
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    • Posted

      I had 3 surgeries in 2.5 months to drain 200cc of blood each time. 30 rounds of 70% radiation, a synovectomy, tkr and tkr reversal in 11 yeays. Plus a broken femur in the bad leg and staph that required reopening the wound just like the tkr. That required a picc line and high powered antibiotic infusion. Will be on antibiotics the rest of my life
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  • Posted

    Good grief....the most I ever heard of is 10 and it was moving throughout the body. Started when she was 16. Mines has only been 4 all in the left knee. The last time was a year ago when the original tkr was weakened and broke loose, then had to be replaced. I do know I have a pvns growth on a bundle of nerves down in the tibia and can't be removed for fear of leg loss. I wasn't diagnosed till I was 65, 12 years ago. Apparently in the US it is even more rare than other spots in the world. I have never heard of either blacks or Hispanics having the affliction. My ortho said its genetic. My original orthopedic group had over 100 yrs experience and they had never seen a case among them. Maybe others can give you more info
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    • Posted

      My first surgery was age 5, they did not diagnose me until I was 14 on the 4th surgery.  Not much was known about it back then.  I had my 9th surgery in 1996 followed by radiation.  Now 18 years later it is back and they are also doing a total knee replacement at the age of 44. My surgery is on January 8, 2015.
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    • Posted

      Bless your heart. Pray for heading and good results. I could not imagine what is happening to you.  🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏 for you!!! 
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  • Posted

    hi everyone i was told i had  PVNS on 1\15\15 i had my first surgery may 1st of this year. i'm still unable to walk a block i wake up with pain everyday does this every get better. does anyone recicve ssi due to PVNS?
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    • Posted

      What type pvns were you diagnosed with and what kind of surgery did you have? Have they discussed radiation. Where are you located? I was just ready to retire when mine blew up but I had several surgeries and radiation before the tkr.
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  • Posted

    I live in the United States I was diagnosed with PVNS in 2010 of my right knee I was 25 then. So far I have had 3 open knee synovectomies on the front and back of knee. All 3 times tumors returned within 6 months. I am now have a tkr in 3 months. I can no longer bend or extend my leg due to arthritis I have developed. Has anyone had a tkr and had the tumors come back? What is the plan of action and does it affect the replacement. Also if you've had a tkr at a young age have you had a revision and how did it go? I'm worried about the new knee becoming stiff and immobile. I am currently crippled and in extreme pain and desperate for relief.
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    • Posted

      I too am in the US. My pvns didn't blow up until I was in my mid 60's. I had radiation before the synovectomy. A year after that, came the tkr. Ididnt have reoccurance of the tumor, as such, but they were not able to get rid of all of it due to placement. It's always difficult to talk about this subject without the risk of being a fear monger but reality is reality. 9 years later the tumor had eaten into the bone causing the stem to loosen. When they did the revision the prosthesis was lifted out by fingertips.....no instruments required. I've had a number of surgeries since but none directly related to PVNS. I know I still have some of the tumor in place as it sits on a nerve bundle and risk loss of leg if there is a screw up. I hope you have an ortho/oncologist handy. I go to a university teaching medical center and my surgeon is a teaching professor. He has seen a number of cases. As you have probably been told, this is a really strange ailment. It effects everybody differently dependending on where it's done the most damage. There are several on this site that have been affected at different areas and in different ways, none of which are pleasant to deal with.
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  • Posted

    I just found this website - its very interesting.  I live in the US and have had BOTH knees replaced. I have had swelling in my right knee for a few months.  The doctor has taken blood out of the knee 3 times - no infection.  He is baffled and thought it might be PVNS.  He says he can't do an MRI because of the metal in my knee. After a TKR, how is PVNS diagnosed?  The swelling is only above the kneecap on the right.  Not much pain but soreness after a lot of walking or standing.
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    • Posted

      I have PV NS and have always been told a biopsy is the only true test. You can look back through the thread an find my history but I have had to do complete rehab 5 times and 11xsurgeries. That drainage he's taking out could well be blood where the tumor is draining. After all this I still have some of the tumor because of where it's located they can't get it all. I am in the US as well and go to a teaching university hospital where they have orthopedic oncologists on staff and my work is done by a teaching professor.
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  • Posted

    Can somebody please describe the process for a biopsy.  I know it's surgery, but how extensive?  Also, can PVNS be detected via a blood test or CT scan.  Thanks so much everyone.  
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    • Posted

      To answer the last 2 questions first....no, it has to be a tissue sample. If you Google PVNS you will see various graphic examples in the tissue, most of which are done with a scope. Unfortunately, the ones that I had when my synovectomy was done were lost or I would scan them and show you. You will see dark red/purple areas that indicate bleeding which is caused by the tumor hemorrhaging. They can do a needle biopsy which is ok if They happen to be on target but going in with a scope (you would be out) is the most foolproof. It's a quick in and out with virtually no down time (a day or 2 at most). Probably 2 or 3 stitches that come out in two or three day. With mine, they started to go in andclooknbutbthe ortho oncologist knew what it was and elected to do a complete synovetomy (removed the lining from the joint, scraped and cleaned as much of the tissue and bone as she dared. The 1st thing I would ask any surgeon, how many cases of PVNS have you personally seen and how many have you treated. Demand someon with experience because it isn't anything that you want someone to decide that you will be his/her guinie pig. It's a very tricky, complicated problem. The 1st thing the will do to reassure you is use the words......non-malignent, invasive tumor. I started out in a practice of 8 orthos with over 100 years of combined experience and none of them had ever seen a case.

      Do whatever it takes to get an accurate diagnosis because treatment varies too much to be operating (lousy pun) in the dark.

      Again:

      1) find a Dr that has experience with the problem.

      2)get an accurate diagnosis regardless of the process

      3) establish a treatment plan. Don't try and find a backdoor escape because there just might not be one.

      Where are you located and where are you being treated. (type and size of practice)

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    • Posted

      Thank you so very much - you have been extremely helpful.  I'm in Northern Va and see a doc in a large ortho practice.  He has done both my knee replacements but seems baffled by this.  He has withdrawn 70cc of blood off my knee since January!! Says in all his years of practice, he has only seen 3 cases like this and they all went away on their own.  He just mentioned PVNS in passing, but after doing a lot of reading, I am beginning to suspect it might be the case.  Have you heard of The Anderson Clinic?  Not sure if they are all over or just here in Virginia.  I think I will go there for a second opinion.  Again, thank you for your responses and I'm sorry to hear what you are going through.
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    • Posted

      If you can find a medical school or practice with a orthopedic oncologist it might be helpful.

      I had to be put under 3 times in 2 months for drainage and they were taking 200 c.f. each time then I had either 5 or 6 needle trainings during that time and they were taking 65-75c.c. each time. I was bleeding so.bad it was backing up into my lower abdomen. My upper leg was black/blue/purple and swollen like a tree trunk.

      You might want to think about contacting Georgetown U med school. Understand they have a notable ortho dept.

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