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Revision TKR Lovetocookandsew’s long road to recovery

I don't know how they usually treat possible low grade infections in a knee replacement joint, since I've never been there before. Is it something they should jump on, or considering if it is infected, it's been this way for a while, does a while longer make a difference? Usually the wait for surgery has been a lot less than this so maybe he forgot to mark it as urgent or maybe he's not thinking it's urgent?
 
Obviously your surgeon knows more about what is going on with your knee than I do, but I would have thought that even a low-grade infection is better treated sooner, rather than later. Is he waiting for more test results?
 
No more test results coming. I just emailed him to ask if we should be waiting 2 more months on a possible infection. I did get a metal allergy test done a couple of weeks ago, with a 5.0 reaction to nickel, and asked him if he thought that could be my problem; he said he'd hate to take everything out and replace with non-nickel just to find out after that it's an infection causing the problems. I don't know, I don't have enough knowledge about all this to understand or know what to do, quite frankly.
 
It's hard, I know, but maybe playing a waiting game will allow more obvious indicators to appear, which could point to the cause of your problems.
 
Unfortunately, we've waited a long time already. I started having problems a while back and my then OS did some tests. Then he had me see a revision specialist who I did not like. So he then spoke to the department chief who happened to be my original OS, and is a revision doc too, who wanted me to go back to seeing him. Since then he's done a scar clean-up, which didn't help, and numerous tests. I think part of the problem is my blood tests are normal, but the synovial fluid was cloudy. Unfortunately, due to a lab tech's mistake, the culture wasn't allowed to grow for 2 weeks-it was read at 5 days and then tossed. He wanted to do another aspiration, so I asked him what we would do depending on whether the results were negative or positive. He said if negative, he'd want to do a clean-out and spacer exchange, if positive he would want to do a revision. I balked at a revision unless there's no other option. He said if positive he could do a clean-out and spacer exchange, then a course of antibiotics and see if that works; if not it's a 2 stage revision. I chose that route first, and, since both results led to the same procedure, we decided to do the culturing in surgery as it's a much more thorough culture then. In the meantime the aforementioned metal allergy test result came back positive for nickel. I asked him about that, and already mentioned what he said. I'm totally confused at this point, totally frustrated with the time it's taking and all the problems with pain, walking, sitting, swelling......
 
I just received a call from my OS's assistant. Apparently the scheduler who called me this morning is new, and she will be speaking to his actual usual scheduler-they will be moving my date forward, even if they have to squeeze me in at the end of a day.
 
I'm totally confused now. When I received the call from my OS's assistant, I thought the doctor had her call to let me know they'd be moving my date up. Since then, he emailed me to say waiting 2 months for the surgery doesn't matter that much since my knee isn't "grossly infected". (I know he thinks it's more likely a low grade infection going on in there, possibly P. acnes) I replied to him to let him know it does matter......TO ME! Wasting two months in pain for a procedure is nuts to me! I could be recovering and maybe, with some luck, have my good knee back by then, instead of still waiting for the surgery. Or I could be finishing a course of IV antibiotics by then, if the knee is infected, etc. That wait just adds more time in pain, little sleep, crankiness, and the inability to do stuff. I let him know exactly how I feel about the wait; I'm pretty mild mannered so for me it was a pretty firm note. Maybe I should have let him really have it, maybe not, but I did let him know waiting 2 months isn't what I want or need. So, now I'll see how he responds, and maybe give his assistant a call on Monday to see what's up with all this. I know she feels my pain, so to speak, and knows how frustrated I am about the whole thing, the time it's taking to get a diagnosis and get it fixed. She has to deal with his schedule all day every day, since he's sooooooo overly busy. I knew when I went back to him that he's too busy, but he's also the revision doc I want. He was my original OS for about 10 years or more, but I changed when it got too hard to see him. During that time he went from an OS to chief, then head of something else also that I can't remember, so he is crazy busy now. I'll stay with him until this whole thing is resolved, then hopefully I'll be done with needing any OS. So now, I am waiting until he reads my latest email and responds-hopefully he'll understand that even though it's not "grossly infected" waiting 2 more months just adds to my pain and stress over the whole thing. We're not 100% sure if it's an infection or nickel allergy causing the problems, and I just want to get on with everything, figure out the cause and the solution and GET MY LIFE BACK. It's already taken way too long, so adding more time is just making me crazy.
 
Have you thought about calling an infectious disease dr? The specialize in infections and the best way to treat them. How does the OS know if the infection has reached the biofilm? Have you looked at other revision docs? Sorry I asked so many questions.
 
Don't be sorry @KarriB Asking questions is a good thing. I haven't seen an ID doc yet since we don't yet know if it is infected or is a reaction to the nickel. We don't know what's going on, which is why he wants to go in there and culture the heck out of everything, then remove all the plastic, clean everything and put in new plastic. I know if it's infected, he prefers to just do a two stage revision, but I'm balking at that and prefer to try to clear the infection while retaining my original parts. I know it may not work, but am willing to take the risk. If my knee turns out to not be infected, and this procedure doesn't help, then we go to the next step which is assuming it's the nickel and do a one stage revision. Either way, if I do have a revision at some point, no matter for which reason, he'll use a nickel free implant. I have seen the other revision doc at my preferred hospital-and I did not like him. Somewhere in my thread I posted about that one and why I didn't like him. I saw him a while ago, but won't go to him. My problem is I really like this OS, and his skill and knowledge, just not his time frames. I guess it's time for me to not be so accommodating and understanding and just throw the occasional hissy fit....lol.
 
Well if you want to try to clear the infection with a washout then the sooner the better, but it sounds like the OS may want to go the 2 stage revision and may be waiting for that reason.
 
I know you really want to continue seeing your OS but I would be searching until I found someone else at this point. He may be a good technicician but what seems like a lack of caring would have been enough to leave that practice. @KarriB has a good suggestion about seeing an ID. There is no way I could be willing to wait for two months and possibly see an infection grow within my body. The ID could try to do another culture to see if there is an infection and if so he can prescribe the best antibiotic to fight it.
 
@newlybionic My OS was going to do another aspiration when I was in his office the other day, even though we were already going ahead with the clean-out. I asked him if he would be doing cultures while inside, he said yes, I asked if they were more thorough, he said yes, so I said why put me through the hell of another aspiration then? I chose to skip that one and wait for the surgery cultures. I just didn't realize at that time that it would be another 2 months, it usually takes a couple of weeks to get a surgery scheduled with him. He's not uncaring, he's actually a very caring doctor. As I said, the problem is he's crazy busy. That's my only concern about him. I think he needs to cut back somewhere, hopefully in his running things some, or his lecturing/teaching, or whatever the heck it is he does. I plan right now to see what he says in response to my last email and go from there. If he thinks it's okay to still wait, then he and I will have a very serious talk. I don't think an ID doc would help at this point since all he could do is an aspiration, which I chose to put off. My OS can do another one if I decide to do it.

@KarriB I don't really know what he's thinking, I suppose I should have pinned him down more, and guess I need to be more assertive. It seems to me like he wants to do the clean-out and cultures and either find or rule out an infection first. I do know he wants to do a two-stage if he finds an infection; it's me who wants to avoid that if at all possible. He probably disagrees with me but hasn't said so. If I knew the IV antibiotics had zero chance of working without a revision, I'd go that route. But if they have any chance of working I want to try to avoid the revision as the original TKR about killed me the first two months of recovery. I think being in limbo is just driving me nuts.
 
I hope he gets back to you soon about trying to move up your surgery date. I truly understand and empathize with you knowing that you have a problem and not being able to move forward quickly. Is there any possible way that you could send him a email to schedule a time when he could give you a quick call? Probably a short call would be much better than going back and forth with several emails and waiting for an answer. I hope you can get moving on the road to recovery again soon.
 
@newlybionic I thought about that, and will ask his assistant to have him call me. I agree email back and forth is slow with him. My other OS always got back to me the same day and we had several conversations by email in a day at times, but this guy is slow. I am just waiting to see what he has to say this time. He seems to look at his email on a weekend night sometimes, and reply then so maybe he'll answer today or tomorrow. If not, I'm calling his assistant Monday for her advice.
 
I had a definite infection, pus flowing out of the healed incision, but because if that the OS had me in an unscheduled surgery at 5:00 on Thanksgiving Eve. If there's a possibility of an infection my opinion is the quicker the better.
 
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