Knee Infection* JSA's OA and RA Journey

[Jamie]

I do think your new thread title will help others find your story. Thanks for agreeing to change it.

I'll look forward to your updates and hope things will improve or at least settle down for you.

 

[jsa]

No worries @Jamie, happy to make things easier.

I have to say that waiting to see what we can do about it all is really playing on my mind but like everyone else who has problems, I just have to have patience until I know what I'm dealing with.

 

[Jamie]

Patience is always the toughest part. Just don't give up. You're always your own best advocate. Sometimes the most difficult and time consuming part of a medical issue is finding out exactly what you are dealing with. That process of eliminating different things and seeing lots of doctors can wear on a person. But it's the best way to get the answers you need so you'll know your options.

We're always here for you if you want to talk or even to hear and understand a bit of a whine when needed. We've all had our challenges!

 

[kneeper]

But with the quad deterioration, it's obviously something that they don't come across very often.

How is your RA, I came across the RA thread when I put RA in the search engine. Sorry you have it too....

I'm doing pretty well right now. I have had joint damage over the years though, hence the replacements. My current doc really wants to stay on top of any changes.

 

[jsa]

Hi @kneeper, good to hear you are not bad right now .... yes getting on top of it is the key although its not always straight forward. It's good to have a doc who you have confidence in and is doing the right thing. I need to get back to my rheumy doc soon.

 

[jsa]

Just updating again and need to get your thoughts on this...

Saw the prof today and he said the cultures were once again negative but because it had clots in the aspirate, they couldn't do a cell count. He is fairly confident there is no infection so I have a couple of choices - undergo another operation or go into a wheelchair.

If I have the operation it would be another huge revision and he said it wouldn't be easy to do. He has very little space to insert a longer stem but does think he can do it. He just laughingly said I could never have a hip replacement which is a standing joke because even though I need a few things done, he knows I'm never having any more replacements.
He thinks the pain on walking is probably from the loose prosthesis where two stems are interlocking in the femur however he doesn't know if the surrounding tissue is much good (especially the quad) so it may just keep recurring. He doesn't even know why it keeps happening - this is the third one which has come loose within months of having surgery. My gut instinct tells me that something will go wrong but I think I might be a tad pessimistic by now. Also he can't fix the quadriceps nor can he do anything more for my ROM so I'm still stuck with a stiff leg that I cant lift and physically have to pick up and place it in the car or onto the bed.

Now if I choose to go to a power wheelchair then he said I could possibly still have surgery later but not once I had lost too much muscle condition - I already have atrophy in the quad muscles.

He felt bad for me and said he would totally understand if I didn't want the operation, he cant guarantee the outcome and said I had to remember that operations come with other risks as well particularly with the amount of co-morbidities that I have.

He said I had high inflammatory markers so I reminded him I always do with the RA (although they were higher than my usual readings). I asked if the RA contributed and he said it definitely would have had an impact on it all but then he went onto something else and didn't expand on it.

Hubby is swayed more to me having the op because he says I have nothing to lose. If the op works I'm ahead and if it doesn't then I'm no worse off... I wish it was that simple.

So I need your input. I know only I can choose what to do but I have come to respect other opinions on here and hearing them would give me more info to consider.

 

[Jamie]

Not intending to be negative here....just practical. This surgeon has been unsuccessful with your previous surgeries and seems to not have a lot of answers for you about what caused the loosening. Would it be possible for you to get additional opinions from revision specialists perhaps in one of the larger cities on mainland Australia? You need an extremely experienced surgeon this time and I'm not convinced your current surgeon is this person.

I understand if this is not a possibility for you, but felt I needed to at least propose this option. You have nothing to lose be at least talking with other surgeons.

 

[kneeper]

^I think that's a good idea. When you have a complex situation like this it never hurts to get a another set of eyes on it--particularly if you can find someone who deals with revisions a lot.

 

[jsa]

Thanks @Jamie and @kneeper - my son asked the same question. It may be a possibility later on but at the moment the bigger states are in lockdown. I'm also not sure if I could physically go interstate by plane right now anyway but I'm certainly not dismissing it.
Originally I had an orthopaedic surgeon who mostly did only replacements. I've worked in the same hospital with him and he has a good solid reputation. When the first implant came loose, instead of having an assistant, he asked another well known orthopaedic surgeon to help with the revision and all went well until a few months later when I had pain again. So the original surgeon referred me to a revision specialist, a professsor who had been trained as a revision specialist at Oxford in the UK. It's well known here that this is the guy that the other doctors refer their patients to when they have problems and teaches at the university here. He also did work in the bigger states before he moved here a few years ago so I'm confident he has loads of experience. He decided on a 2 stage revision but I badly broke my arm into 20 pieces (I was diagnosed with osteopenia in 2013). I remained in hospital for five months and had 4 operations in total. But once again I'm in pain so I've gone back to him. So far he hasn't given me cause to not trust him but you are right, if possible another opinion won't hurt. I have a rotated tibia which was corrected by osteotomy when I was much younger but it was unsuccessful and I returned to waddling like a duck on that leg. It is also the one I'm having trouble with now - I probably have placed stress on it in unusual places. Because I had always had trouble with it and it's not straight forward, I kept putting off having the initial TKR.

 

[Jamie]

The details you provided in your post above are VERY helpful. Thank you so much for providing them so that we know more about your situation. You have some mitigating factors that definitely could impact a knee replacement. I'm glad you're going to consider additional opinions and hope you find a way to make that work out. Good luck!

 

[kneeper]

It does sound like you've had experienced surgeons and in my book it is always a good sign when your surgeon doesn't claim to know it all and is willing to consult with others who may have more experience in an area.
You may also want to consult with your rheumy before deciding since the muscle issue may be related to your RA. If it's like here, it can be a long wait for rheumy appointments, but they are usually willing to talk to you if an issue comes up. When is your next appointment?

 

[maryo52]

Just want to say, boy, that's a lot to contend with and I'm so sorry.

I just got an acute onset knee infection. It started on a Sunday and I had surgery on a Friday with the top knee surgeon in Boston USA.

I've been on the pity pot today -- well, I've earned it -- but I feel lucky after reading your story.

 

[jsa]

@Jamie Sorry I didnt go into it more before, its very hard to include everything into a few posts and I'm cautious about putting it up online but I need to talk about it with people who know what I'm going through and I need to get others points of view. It's very unlikely other people on here will have all these problems but they may have one or two things that they can relate to and share advice or simply like @maryo52, not feel so alone. I don't want people thinking the worst about TKR's, they have been a god-send to many.

@kneeper I have made a GP appointment, the quickest I can see him is in 2 weeks then I have to make the rheumy appointment... they wont make appointments here with specialists unless you have a current referral. My rheumy will take about 2-3 months if its not urgent but I will talk to the GP and see if I can get it sooner.

@maryo52 I'm so sorry to hear you have been through a hard time and yes you have a right to sit in the pity tent for a while, its not the easiest of things to face. There may be even more ahead while you sort through this but in the meanwhile, take time out for yourself. I got a lot of reading done, did my ancestry, sorted my photos and watched all those series had been meaning to see.

 

[jsa]

Just came on to check out a few others on here and let you know why I disappeared.

I'm grateful to those who replied on this thread inluding @Celle @Jamie @kneeper @Jockette @sistersinhim @PegGar16 @maryo52 @Sisterpat @Jaycey @Pumpkin and all the others who helped me on this journey but I just couldn't bring myself to unload on you guys again until I accepted the situation myself.
My surgeon ordered new x-rays which showed a very loose femoral prosthesis (much more than it was two months ago) and now he believes that with limited space to extend it further, I would have to have a Total Femoral Replacement instead. Has anyone heard of this? I was told it means taking out the existing prosthesis and the femur including my hip so effectively it would be a knee, femur and hip replacement all in one. At the moment he thinks the tibial implant is ok but said he will only be confident it is fine 'when or if' he operated. He said this TFR would be a salvage operation to save my leg and he is not confident I would survive the recovery of such a huge operation - maybe because I had anaesthetic problems a few times before?? He said they still don't know exactly why these complications keep happening but with having osteoporosis and RA, there is a big chance they could make it worse because the muscles are atrophied and and the tendons are no good - he said I may end up stuck in bed if this one loosens like it has several times now. He also asked a few other revision specialist colleagues their opinions and this was what they came up with.

At present he wants me to transition to a power wheelchair permanently but if I still can't stand the pain then we can try to get me physically fit into perfect shape with my asthma, diabetes and RA but added even then he still would be hesitant. He also mentioned that I could just have it amputated now while the hip is still in place but said that would be a big op too :( ... nothing sounds very good at this point.

Oh and @kneeper, I tried to get the appointment with my rheumatologist but she has gone in with other Dr's in the hospital rooms so they are charging $500 to see her and I have to wait for 6 mths for an appointment. Some help that is. Luckily on Wednesday my GP is back from holidays so I get to see him to ask what he thinks about it all.

I guess I have to just keep plodding on... lol ... however they might want to give me a few lessons, I think my wheelchair skills are much to be desired particularly when I have to have a leg extension on it for my stiff knee. It's a matter of "lookout public, here I come" .... haha.

 

[Jockette]

I’m so sorry to read this update. Hugs and prayers as you make decisions.

 

[jsa]

Thanks @Jockette, I was wondering how you were going too. Did I read in someone's thread that you were still having problems?

 

[Jockette]

I still have the same issues I’ve had all along. It’s been 4 and a half years since my surgery and bottom line is, I just don’t trust anyone enough to try to fix things. I lost that trust when the partial made me worse than I was before the surgery. I am managing and thankful I’m not any worse than I am. No one has offered me a revision, anyway, since they can’t find anything to fix. It is what it is. Thanks for asking.

 

[jsa]

Hi @Jockette ... I replied on your thread before reading this but I feel bad you had to go through such hoops to even have it reviewed. Its great that it's no worse now but keep an eye on it because its possible the x-ray isn't showing much progression and it still could be worse on the inside, which is what happened to me. They found out at arthroscopy that mine was quite bad despite only being called moderate on the x-ray report however silly me left it another 8 years before getting a TKR and by then it was almost too late.

 

[kneeper]

I'm sorry you're having such complex problems. (((jsa))) It's good that you have been able to see a revision specialist who deals with tricky cases.

It sounds like rheumatologists are in short supply everywhere. :( I'm glad you will be able to consult with your GP this week .

I don't know how it works there, but sometimes if your GP gets involved they do some coordinating with your other doctors.G

 

[Jamie]

@jsa .... I'm so sorry to read this latest information about your knee. I'm glad you'll have a little time here to discuss these options that have been presented with your GP and hopefully with some of the others on your medical team. I certainly understand the surgeons' concerns about your welfare for any operation that might be attempted. You have a strong spirit and it comes through in your posts. I have confidence that you will make the best decision for you. Things like this are never easy, but a positive attitude goes a long way toward being able to pick up the pieces, make a decision, and go on to forge a good life for yourself. Please know that your BoneSmart family cares about you and we'll be here to provide whatever support and information we can.