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PVNS and the pain that goes with it

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Chronic Pain
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Posted 9/15/2015 4:32 AM (GMT 0)
I was diagnosed with PVNS last Christmas but I've been suffering from essentially never ending pain for going on 3 years now.

The whole mess started with a pivot at work that led to a torn meniscus in my right knee, it took 3 doctors and an orthopaedic surgeon to figure it out and decide I needed surgery to fix the problem.

6 months later I was the table having my first surgery. Once I came around again the surgeon told me I would be sore for a while because there was a lot more inflammation than he was expecting to see and he scraped it out for me. A month later he frowned at my knee at the post op exam and said I wasn't healing the way he had hoped and sent the paper work to send me for physio.

A couple months later I started the 10 weeks of 5 day a week torture that was my physio and was told at the end that I was totally clear to go back to work, even though I still had hurrendous swelling and pain.

After moving a few towns over my knee ballooned and my GP said it needed to be drained, 3 needles and a shot of cortisone later I was feeling better than I had in over a year and half. I went and found a job near by and tried to pick up my life where I left off but less than 3 months into the job, my knee once again ballooned out so large that it was impossible to bend it and nearly impossible to stand on it.

I was referred to a brand new knee specialist who sent me for another MRI. When the scan came back he said I had diffuse PVNS in the lining of my right knee and after a long discussion we decided that the best option was to go a head and do another anthroscopic surgery to scrape out as many nodules as possible. I had this done first week of June and the stitches removed 2 weeks later. I decided once the stitches were out that it was okay to go for a short walk to the post office, no more than a block and half round trip. By the time I got back home my knee was so horrifically swollen I could barely drag my leg up the three stairs into my house.

My knee is now worse than it was before the surgery and seems to be getting increasingly painful as the days tick by.
I have an appointment with my specialist on Thursday but I'm really starting to feel like I'm never going to get any better, has anyone else had a similar experience with PVNS?
Posted 9/15/2015 9:05 AM (GMT 0)
Welcome to the forum and although I don't have Pv it was ongoing knee issues and surgeries that landed me on this road to CP so I understand your frustration. Did they just scrape the synovium or remove any of it? It's strange but years and years ago when I first entered the medical field,actually still in the learning process,pvns was still being categorized as a cancer then the entire script changed and was switched to a chronic joint disease with no non-surgical treatment protocol. Still today its been found that after removing the entire thing its likely to grow back and radiation therapy has been found to be beneficial for preventing that from occurring. It is way too early in the game to assume that this is what is happening.

We are not Drs and nothing we share from experience should ever replace advice of your Dr. If you understand the anatomy of the knee you can understand why your having the problems you are. The knee like 90% of the body's joints is a synovial joint which makes it a very strong and flexible joint. The synovium is a thick and tough tissue that encapsulates the actual knee joint and when something like pv occurs and they have to scrape,remove or alter that protective tissue it leaves the joint kinda open and vulnerable. In a good percentage of pv sufferers replacement is the end option. I'm sure your specialist will offer you some choices or at the least recommendations as to where you need to go to move forward and bring about the best quality of life living with a chronic joint disease.

Your really young so your body has the means to mend and regroup whichever way you have to go,surgery or possibly trying to radiate the tissue and diminish any new growth. PV is a benign growth so don't let the radiation therapy scare you as it may be your best option if the knee continues to give you problems.

There's been some major alterations to the joint therefore its steal in the healing process and time is going to be the best indicator of what lies ahead as far as mobility and pain goes. What you are experiencing is not uncommon for someone who has had the amount of invasion into the joint. Until you see the Dr I would try to stay off of it as much as possible or at least limit the demand on the joint by avoiding steps,prolonged standing or bending and try to keep the swelling down if possible.

Good luck to you and keep us posted.
Posted 9/15/2015 3:20 PM (GMT 0)
Hello & welcome to the forum. Sorry to read what you are dealing with concerning your knee. We have had a few people come through here in the past with PVNS. It sounds like you have a dr that is familiar with this condition & that is very important.

You have had a lot of work done to your knee so its no wonder that you are feeling this way. Try to do as Vickie suggested, stay off that leg as much as possible & keep it elevated until you see the dr.

Keep us posted on how you are doing.
Posted 9/15/2015 4:18 PM (GMT 0)
I do not have PVNS but started with a torn meniscus surgery followed by 3 scopes, each progressively more intense, these were all outpatient surgical procedures, still had lots of swelling, pain, etc., like you my knee ballooned up. Finally, I had a total knee replacement. Its the only thing that has significantly reduced the pain & swelling. Its not fun, a long recovery, but was eventually worth it in my case. I have other problems so it was very nice to be able to put my knee lower on my list of concerns.
Posted 9/15/2015 6:07 PM (GMT 0)
Hello and thank you for all the responses!

I have an appointment with my knee specialist on Thursday so I'm hoping that he'll be able to shine some light on all this and maybe have some treatment suggestions to help with the pain and swelling.

I've often wondered what would have happened had the original surgeon not mistook the inflammation he scraped as arthritis. I was supposed to have a follow up MRI after the first surgery to check on what assured me was a bakers cyst on the back of my knee but when I went for my 1 month check up he said not to worry about it, that it wasn't going to be needed. I never liked that specialist, it was a 3+ hour drive to see him and he always rushed you out of the appointment as quickly as possible and clearly he is not familiar with PVNS being as he didn't recognize it when he saw it nearly 3 years ago.
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