PVNS Reaccurring 10th time...

It is giant cell benign tumors of the tendon sheath.  Mine is the diffuse kind.  They have done complete sinovescomys 9 times, and I had radiation in 1996.  Now surgery number 10 with a total knee replacement on January 8, 2015.

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

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.

Bless your heart.  Hope u better. Old guy.  How u been?

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

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.

I received so after my 9th surgery and 36 rounds of radiation. They kicked me off after 2 years though.

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.

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.

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)

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.

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.