PVNS treatment

Dear Oldfatguy1, thanks for your input,

I am beginner and my experience of PVNS is around one month.

So for my understanding there are two ways for PVNS tratment.

1. do knee surgery,try to remove as much as possible, then do  Radiation in 6 weeks.

  I suppose after this treatment there should not be knee problem in 5-10 years....

  My question is why you take an 30 rounds of radiation?

2. go straight to open knee syno ectomy in lieu of radiation

For me it's better to choose the second option if everything can be done  properly during surgery.

although after surgery like you says there might be still an unreachable piece of the tumor that is too dangerous to mess with.

So this is question to doctors if it's possible PVNS treatment without radiation.

From other hand on our last metting doctor 5 times says "Belive me" that the treatment of Radiation is the best one and there should not be problem later.

 

There comes a point after asking all the questions someone, normally the specialist, has to tip the scales for the decision. I guess the one question I would have, how many cases of this have you seen a what is your 10 year success rate. Having had both radiation and surgeries AND still having the growth, I don't know for sure there are absolutes. I personally know of one case of a young girl that radiation and 13 synovectomies and it was moving from joint to joint. Anythingv you do is drastic and combined with the rarity of the beast, somewhat uncertain. It's hard to just say it's just a scrap shoot and you have go with the doc but that sometimes is the call. When it comes to joint problems everyone says their doc is the best in the business which unfortunately means someone is wrong, they can't all be the best in their field. It's a heavy weight to carry but for sure, a decision has to be made. Best wishes and hope that whatever you do works out for you. Incidentally, if you haven't already looked, there is a lot of both old and current info k n the internet

where are you located where do you get treatment?

 

I'm in the Kansas City metro area and use the university of Kansas medical center in KansasCity, Kansas. We have a nephew who is an infectious disease doc at university of Washington in Seattle and ubdersta n d they have an excellent ortho dept. John is head of the Tele medicine dept that offers low cost evaluation even using Skype throughout the Pacific northwest. You can go online and get info . Mayos in Rochester, Mn has people who are very competent in ortho work. I had my wife up there 6 yrs ago and was talking to one of their dept heads and my diagnosis came up. He seemed to have a much better than average understanding of the problem. I haven't previously mentioned it to you but after 9 years post tkr I started having horrible pain suddenly. I was afraid it might be the tumor so contacted the ortho oncologist at KU. She had done the synovetomy in the summer of '03, a little more than a year before the tkr. She immediately got me over to a young asst professor in the dept. Xrays showed the post of the appliance had broken loose and was free wheeling inside the bone so when I would move my leg the prosthesis was rubbing against the nerves inside the bone and you can imagine the pain reaction that was triggered. The tumor had caused this to happen. When they did the revision he lifted the lower portion out with his finger tips. All it took was a slight tap to allow the upper part to come loose from the femur. Then" just so you know the rest of the story, the next day I was feeling great and was sitting in a chair getting cleaned up when I decided to stand up a little but to pull up my under shorts and fell twisting my femur into with what was referred to as a torque break. The next day I was back in surgery getting a steel plate from hip to knee screwed in place. 10 months later the plate became such an irritation they removed it and 30 days later I was back in having the knee reopened and cleaned and flushed.....staph. I was on antibiotic infusion for 2 months then antibiotics orally for 9 months. Apparently they quit working and the staph returned. In March 2015 the entire prosthesis had to be removed, the infusion therapy repeated, the leg immobilized for nearly 4 months then the new appliances inserted and the leg immobilized for another 30 days. Since then I have been in PT . my ROM is 112/0 but I walk like a new born deer. I'm working on strength and still on oxycodone and morphine sulphate. I've now had a total of 11 surgeries and 30 rounds of radiation. This includes 3 different joints, the broken leg and 2 staph tratments. I am currently in my 5th total rehab. Most of mine was due to being a smart ass and pushing the envelope with the rehab too soon. I don't tell you this to alarm you in any way but to let you know recovery is out there but its slow and just takes patience.I read a lot of posts from people saying the are impatient, over achievers and all the rest of the adjectives for getting things done their way. This process, if nothing else, tells you the body is in charge and will heal but in a methodical way. I guess I don't have to tell you to enjoy the the snow this winter but from inside, by the roaring fire. My oldest son's best friend lives in Sand Point, ID. and I've seen some of his winter photography......absolutely stunning.

What doctor have you used with PVNS at KU?  I am told I have diffuse pvns in my left hip according to the MRI report.  I am in SE Kansas and am currently seeing a dr in Tulsa but he is not specialized with this condition.  Looking for someone who has treated this more than once.

T

All radiation is nuclear therapy as they just use various forms of material. The were using the "gold" inserts for prostate cancer 40 years ago but not sure they haven't gone to something else since then. I believe the sign over the cancer center at the teaching hospital (medical school) uses that terminology.