Well, actually it has been 7 months since I was diagnosed by I'm always searching for more. Did they discover anything? Is usually the question I'm always asking.
I found this site when I googled "PVNS 2013"
http://www.pathologyoutlines.com/topic/jointsPVNS.html
Thursday, November 7, 2013
Monday, November 4, 2013
My doctor broke up with me.
I had to see about 5 doctors before the surgeon who performed surgery on me told me what I had. I tried to ask him how much he knew and how much experience with PVNS he had. He only said that he had seen it before but didn't elaborate. He sent me home with a DIY post-op list of PT exercises I could do on my own back in June. That was the last I had seen of him until today.
I told him I had all the signs of PVNS returning. Tight feeling in my knee, puffy looking when it's not enflamed, snapping knee cap, shooting pains down my leg... He said the clicking could be from the rough spot that he found on the knee cap but said nothing can really be done at this point.
He went on to explain I'm in a status of "wait and see" and that unless I have serious issues with the knee then they don't want to do anything to it and if there is a problem he will just send me to a tumor specialist at a different hospital.
Not sure how I feel about it. He offered me no relief and no hope. No suggestions of what I should be on the lookout for other than inability to move my knee properly or massive swelling. That was not what I wanted to hear. I would rather have been told that if it gets worse at a degree of an 8 from 1 to 10 then I would feel like I got good advice. I'm probably at a 2 in that scale currently so I know that I won't likely need to see a doctor again anytime soon. Or I can hope.
This disease can be aggressive and while I wait, there can be major damage done to my knee by the PVNS. "Wait and See" is not good advice even though I know that was the best advice he could give me. I am assuming that the doctor is really not as familiar with PVNS as he indicated. Many doctors who are not familiar with it don't like to operate on it. So I will wait and I will see someone else when the time comes.
I told him I had all the signs of PVNS returning. Tight feeling in my knee, puffy looking when it's not enflamed, snapping knee cap, shooting pains down my leg... He said the clicking could be from the rough spot that he found on the knee cap but said nothing can really be done at this point.
He went on to explain I'm in a status of "wait and see" and that unless I have serious issues with the knee then they don't want to do anything to it and if there is a problem he will just send me to a tumor specialist at a different hospital.
Not sure how I feel about it. He offered me no relief and no hope. No suggestions of what I should be on the lookout for other than inability to move my knee properly or massive swelling. That was not what I wanted to hear. I would rather have been told that if it gets worse at a degree of an 8 from 1 to 10 then I would feel like I got good advice. I'm probably at a 2 in that scale currently so I know that I won't likely need to see a doctor again anytime soon. Or I can hope.
This disease can be aggressive and while I wait, there can be major damage done to my knee by the PVNS. "Wait and See" is not good advice even though I know that was the best advice he could give me. I am assuming that the doctor is really not as familiar with PVNS as he indicated. Many doctors who are not familiar with it don't like to operate on it. So I will wait and I will see someone else when the time comes.
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