Thank you for the all of the encouragement and warm advice. My husband thinks things are worse now than 6-8 weeks ago. He thinks the sooner I have some sort of surgical revision, the sooner I can get on with healing and to a better place. I just got back from my PT, which I haven't seen in 5 weeks. I wanted his input because he has been my therapist for a year now, since before the TKR. He immediately said that the side to side is much looser than he thought it was last time I saw him. The swelling is definitely down. Whereas my original surgeon kept saying there wasn't any effusion, my PT said that there was, but that appears to be better now (since the revision doc took excess fluid out 5 weeks ago).
Before my PT appt, I had come to the realization that I have to try something, and just "do it afraid" if that's what needs to happen. I was leaning toward the oldest revision doc, because he was going to try just a thicker insert, but said he might get in there and have to take out the metal. He only does revision knees and hips. He ordered the metals allergy test. It seems like he is paying more attention to the details. When he took the fluid out, gave me a steroid shot, gave me a steroid med pack, and prescribed a heavy duty NSAID, he said he hoped that those things would significantly help and buy some time. But he said IF THEY DIDN'T significantly improve the pain in 2 weeks, that we would proceed with the revision.
It is clear to me now that just waiting for posterity's sake will not improve my lot. I was wondering if I was just being a wuss and crybaby about the pain. But the oldest revision doc told me "It's not supposed to be like this 1 year out". Today, my PT made me feel better when he said I wasn't a wuss, that my pain was real, and that he watched me as it increased over the past few months. He liked that the other revision doc was cautious, but did not like the all or nothing aggressive approach (which was what I struggled with as well).
My PT asked me if I was okay with a surgeon not exactly knowing what he was going to do until he got into my knee. Interesting question. I would much rather have a surgeon plan on the minimum and prepare for the maximum but not really know what will be required until he got in there and saw what he had to work with than a surgeon who planned to take everything out and start over. So, that is my decision is to go with the oldest (and first) revision surgeon that I saw a few weeks ago.
Like many of us, I beat myself up with the "what if's" or "should have's". I struggle to accept that sometimes things happen. Because if I can identify something I did wrong, then I can change that for next time and hopefully change the outcome. But also with placing blame on myself, there comes the guilt. Both the older revision doc and my PT today made me feel better when they said I did not do anything wrong in the recovery process. I did my part and this still happened. I needed to hear that, especially today.
In the mean time, I have two other important appointments coming up. First one is tomorrow to meet with an electrophysiologist doc that my cardiologist referred me to. In October, I wore a heart monitor for 10 days. My cardiologist said it showed I was in Afib for 23% of the time, and I felt it as I logged the episodes fairly accurately. The referral is to get a heart ablation done. My older two brothers were my age when they had it done, and it helped them. I am not worried or nervous about it. It's just that it is one more thing when I did not want to have one more thing.
The second appointment is with a rheumatologist next week. My RF factor was 114 and then 156 two weeks later, when normal is 0-14. I have primary Sjogrens as an autoimmune disease, diagnosed 8 years ago. But, it has been in revision and my rheumatologist retired last December so I did not bother finding another doc (until September when the test results came in). An extremely elevated RF factor doesn't ALWAYS indicate rheumatoid arthritis. So, I will be interested to ask the doc if it has any connection to what is going on in my knee. Again, one more thing.
To keep my spirits up, I am going to start focusing on the blessings in my life and not on the things written about above. I will choose joy. I will choose to overcome my fear over another surgery.