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I'm in pretty much the same situation, with debilitating knee pain.
There is quite a debate going on about whether to do early TKR's...I've been told I need one, then had that decision reversed when the MRI's showed relatively good cartilage through much of the knee, with a couple areas of deep damage.
So anyway, the story I got was that when the patient has relatively good cartilage (with the exception of a few bad spots) then you can't be certain that the cartilage damage is what is causing the pain. And so, you could go through the whole TKR and find out it didn't resolve your pain. Some people on this web page are facing this, and it's very traumatic.
So I was told to continue with my pain management, frequent cleanup scopes, PT, and accepting that I will have knee pain. I'm not sure how into this plan I am I am going to see some doctors that do work on focal defects--ACI and OATS procedures--to try to restore focal cartilage damage.
I think the problem your second doctor encountered might have been a lack of certainty that your pain was solely from cartilage lesions. You might want to read Dr. Grelsamer's web page and book: http://www.kneehippain.com He has done extensive work in the field of PF damage and has amazing information on potential causes of patellar pain. You would do well to read up on that.
One thing I can't comment on is how your genetic syndrome might affect the decision to replace the knees early or not. You're in uncharted territories there....sorry. I wish I could help further, but all I can do is point you to the patello-femoral joint section to read threads on articular cartilage damage. You're in good company there, unfortunately....Heather
We do have an MD who reads posts on this board--Dr. Grelsamer. Of course, there are 7,000+ of us, and only one of him. So that's why I suggested that you read up on his web page and book, because he's a very, very smart guy.
One thing I wanted to stress again: the question that Dr. Grelsamer and others raise in folks like us--who have focal defects, but in all have knees that "aren't so bad" when compared to others with massive lesions and bone spurs--is that one cannot be absolutely certain without vigorous testing that the actual patellar lesions themselves are causing our pain.
Basically, when you have damaged cartilage on the back of your patella
Hi...Just a quick point that Im not sure Heather has realised?!QuoteBasically, when you have damaged cartilage on the back of your patellaAs rawsushi has had Bilateral Patellectomies (eg/ has NO PATELLAS) this type of scenario is not really relevant I don't think...
but it does Significantly change the ballpark in terms of TKR difficulty as I have read a number of articles on the extra difficulty this adds to the equation (I will scan and post them if you are interested rawsushi as they are in medical "tomes" rather than the web )
Also, I too do not understand the relevance of cartilage pain / bone spurs after TKR since the end of the Tibia and Fibia are sawn off.....and all cartilage between is removed during a TKR??.....