Painful Pvns

I am 33 years old and currently trying to tough this horrible disease out. I was officially diagnosed at age 20 with PVNS. To date I have underwent 12 surgeries as a direct result of this disease. I have had to have 3 ACL repairs, one of which they had to ***** my hamstrings to make the ACL, I have had 12 synovectomies and a patella tendon repair (this included a medial and lateral release). My bone surface is not good. I have had 10 weeks of chemo treatments, no radiation and I could not even begin to tell you how many cortizone injections. I have had to have an in office manual manipulation under local anesthetic (which is more than awful) due to the scar tissue. At present time they don't want to do radiation or knee replacement. The pain from this disease is more than I can take some days.Draining 80+cc of fluid is an all to normal occurance for me. Just like everyone else, the swelling comes from no where. I take vitamins, I don't drink, exercise daily and eat plenty of all the right stuff yet this disease continues to persist. If anyone has any advise I am all ears.
meghan79 meghan79
31-35
2 Responses May 9, 2012

It took 7 years before they established I had PVNS and now I've had a total knee replacement and knee cap replacement because they left the replacement too late my knee was eaten and black and rotten so push for the replacement as that is the only solution. This all came to ahead after my first consultant had undertaken a half knee replacement which kept moving so I changed consultants who agreed something was wrong and it was when he opened my knee up they found the problem and had to replace everything. So again push for the replacement as that is the only solution in the end as no one deserved to go through the pain.

I have it in my knee. I am refusing surgery at present. What vitamins are you taking and what amounts?<br />
Also have you tried fish oil, hops, curcumin, ginger? There are loads of suppliments and I wondered what you are using?

I've tried many but it was too far gone for anything to work - my knee is a mess after all the operations and i do still at times experiance pain but I can on a positive note walk some distance and with difficulty I can ride a bike which they said I would never be able to- I do take fish oil and multi vitamins but was told after the operation my main leg bones are weak. Before the operation I could hardly walk - I have missed out on so much of my young daughters life because of this !

I am so sorry. I am not in any pain at present, it is nodular pvns was yours diffuse?