PVN Recurrence Back again?

Anyone had PVNS in the back of knee
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yes - 0.0%
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yes needed surgery - 0.0%
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yes needed open synevectomy - 0.0%
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no - 0.0%

 
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jill777
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 9/22/2017 5:00 PM (GMT -6)   
I was diagnosed with diffuse PVNS in 2009 after several visits to orthopedic. I had an open synevectomy and unfortunately it came back 1 year later. I had another open synevectomy for the front they considered the back as well but they thought it would be too long recovery althouth they saw it in the back as well. For those of you that had have constant reoccurrence yo know that it is very difficult to get the back because of all the nerves etc without open synevectomy posterior. After the second open synevectomy they suggested radiation because of how reoccurring mine was. I did that for 6 weeks. I got it back in a year and a half with full swelling and pain all on the from of my knee but constant shooting pains in the back of my knee (up and down the leg) was also a sign..that it was back. I ended up trying a special arthroscopic surgery, the 2 knee manipulation because my knee wouldn't bend. Obviously again they couldn't go too far to the back of the knee but they scraped most of the front out. I was finally blessed.. 3 years with no reoccurrence until now ( at least I think). I have been getting pain up and down my leg in the back, there is a little ball in the back of my knee, but no major swelling in the front so for me that is weird. But it feels just like before..back to limping and pain...
The new doctor couldn't aspirate it because of the area in the back. Sent for another MRI...this Monday.
I remember every doctor I have gone to in the past few years saying if it gets tooo bad in the back that I will have to do the open synevectomy posterior.
I have had several conversations as well regarding the chemo they have out now, but I am not willing to go that route.
Has anyone had it come back without huge swelling in the front and similar to my current symptoms.. pain shooting up and down and back to limping with a little ball in the back of my knee???

The doctor I have to start the process with is always the orthopedic , but then it gets escalated so I literally told him the kind of MRI I needed (with and without contrast). He was nice and understood I had more experience with this disease then the 3 patients he has seen over 15 years with only 1 occurrence so I understand we have to see oncologists for this.

I am just getting myself prepared for the next one. I knew it would always come back, but this way is a little confusing to me.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14976
   Posted 9/23/2017 12:09 PM (GMT -6)   
Jill, to my knowledge we do not have any current members with this diagnosis. Many years ago we had a lady that had PVNS & had several knee scopes over the years. Something that caught my eye in your post is the dr you are current treating with does not seem to have that much knowledge about this. If this were me I would search out a specialist in my area that has the knowledge. If you can't find one, then I would check out the nearest teaching/university hospital & find out how to be seen. Your PCP can make the referral.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

jill777
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 9/23/2017 12:13 PM (GMT -6)   
Thank you. You used to have a lot. I have an OO but he's far away. I have to plan a trip there

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14976
   Posted 9/24/2017 4:05 PM (GMT -6)   
I a little confused with your reply.
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14976
   Posted 9/24/2017 4:05 PM (GMT -6)   
I a little confused with your reply.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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