Knee Infection* CABLAND's 11/13/2023 LTKR Recovery

[Layla]

Hi cabland,
With any luck the next six weeks brings the improvement both you and your surgeon are hoping for. I am sorry you're enduring this and the uncertainty it brings, it's not what we hope and dream for when considering joint replacement. Thanks for sharing your journey and know that we're here for you always.
Best Wishes for brighter days.
@cabland

 

[cabland]

Thanks @Layla And @EalingGran . It is annoying for sure...especially when my surgeon uttered the phrase "You may just have to live with it". WHAT!? That's when I clarified how I was worse than pre-surgery, etc. I'm not sure he was "getting it". Good times.

 

[cabland]

Update - I am 5 months today from my left TKR. When I last met with my surgeon (5 1/2 weeks ago), he gave me a steroid shot and told me to rest for a week or so before reintroducing activity. I, for the most part, did that. The good news is I have made progress on strengthening as the shot definitely appeared to interrupt the perpetual inflammation I had in my knee and allowed me to do more.

The bad news is, of course, the shot did nothing to change the mechanics of what I feel in my knee as I begin to bend it. As a hobby, I now let people place their hand on the side of my knee and they feel the catching, popping, crunching just so they get a "feel" (hah, see what I did there) for what I am experiencing. As expected, my inflammation is getting progressively worse again. Indeed, I still 10000% believe the implant is either oversized or somewhat mal-positioned which causes it to irritate the muscles/tendons/nerves around it with every step. Indeed, it actually impinges the movement of my knee on first bend so I am perpetually not lifting my foot high enough and often catch the toe of my shoe (I really am a fall waiting to happen).

I really think there are a few categories of knee replacements similar to this:

1. The "Ideal Regular" folks - these are the people who go through the usual 6-12 week recovery and feel pretty good about where they are at post that. Yes, their "full" recovery still takes a year, but at 3 months or so they are probably 80-85% and they slowly get that last 15-20% over the next 9 months. Honestly, this is MOST of the folks I know who've had knee replacements.

2. The "Slow Regular" folks - This is similar to group 1 above, but for whatever, reason, everything seems to take longer. It could be due to any number of things. Their progress is the same pattern as the "ideal" group, but at least one or every phase takes longer. "Full" recovery could be two years...maybe even a little more.

(Note: Either of the two groups above could still have minor lasting items like "more pain when it is cold" or "a little stiff in the morning", etc.)

3. The "Outright Failure" folks - These are folks who have a significant issue. This is often immediate or happens within the first few months. An infection might be involved which could lead to a one or two-stage revision. Sometimes a lot of time is spent fighting the infection before the inevitable revision for these people.

4. The "Moderate Material Issue" folks - These are folks whose knee replacement doesn't "appear" to warrant a replacement (i.e. the old xray shows "everything is ok"), but they still have a material issue (pain, range of movement, gait, whatever) at say, post 3-6-12 months (or longer...maybe much longer). The "Slow regular" folks might "feel" like they are in this group, but in reality the "material issue" folks have a real root cause for their issue beyond the "normal" recovery aspects. My GUESS is that the vast majority have an issue introduced by the surgeon. This could be soft tissue, bone, or implant-related. Having watched WAY too many TKR surgical videos it is VERY EASY for me to see how this happens (even for very experienced surgeons like mine - thousands of TKRs). As an example, an implant that is slightly mis-aligned or a little too big or too small will look OK on an xray (which generally only shows gross issues), but may result in material issues. In some cases your body (a miraculous work of God!) might "adapt" to this...maybe fully or perhaps just partially. In other cases, you never really adapt and are faced with either a.) living with it, or b.) rolling the dice on a revision.

Right now, I am putting myself in the "moderate issue" camp. I say this because of the nature of how my knee and replacement feel at 5 months out...which is very similar to how it felt the first week or two after the surgery. I am definitely worse than before the surgery. The infection, etc. did delay what I'll call the "normal" aspects of my recovery, but the basics of the implant just seem and feel materially off to me...or the soft tissue was damaged much more significantly. Heck, when I look at the CT and xray I think even I can see mal-positioning. So, what do I do now? As of today, I am in the "wait to see if my body will really adapt enough" around this. I see my surgeon again in about another 10 days. I suspect he will say the same thing he said last time. He was hopeful I would be 90% better by time I saw him - in reality, I would put it at 10%...maybe. I may ask for another steroid shot just to allow me to push through some of the discomfort/catching to improve the "adaptation" process. If he doesn't have any answers, I suspect I will be seeking a second (and possibly third) opinion from docs specializing in revision.

Stay tuned!

 

[Jockette]

4. The "Moderate Material Issue" folks -

I am in this category. It’s been 7 years for me and I’m managing ”well enough” living with it.

I loved your descriptions and it’s a shame there are so many who don’t have good outcomes. They may technically be a “small percentage”, but when talking about many thousands of knee replacements, even just in our country, there are a lot of us.

Best wises as you continue on!

 

[cabland]

4. The "Moderate Material Issue" folks -

I am in this category. It’s been 7 years for me and I’m managing ”well enough” living with it.

I loved your descriptions and it’s a shame there are so many who don’t have good outcomes. They may technically be a “small percentage”, but when talking about many thousands of knee replacements, even just in our country, there are a lot of us.

Best wises as you continue on!

I've read many of your posts @Jockette and suspected the same. I should probably make that last post a standalone post here in the recovery forum. In your case, did you feel it was off from the beginning (despite some improvement over time)?

 

[Jockette]

In your case, did you feel it was off from the beginning (despite some improvement over time)?

Looking back I suspect it was, but I didn’t know any better in the beginning. At my one year check up I requested my surgical report, thinking it would be a fun read and wondering how much I would understand, after being on Bonesmart for 6 months. I understood more than I expected too, and found out, for the first time, that my surgeon also did a lateral release during my PKR surgery. Long story short, my gut feeling is that something went wrong with that, or at the very least, my ligaments were not properly balanced when putting things back together. None of that shows on my “perfect X-ray.” And no one will order any other tests. ( 3 second opinions)

I should probably make that last post a standalone post here in the recovery forum.

Bonesmart prefers just one recovery thread per member, in this forum. We can change your title to reflect your thoughts, though.

 

[NeedaThneed]

Clever categorical descriptions!
I too would be in the moderate material category…but it feels like outright failure some days. I too like to read my X-rays, etc and learn (self confessed anatomy nerd/kinesiologiy degree). I too have a surgeon who says everything looks great, as did the radiologist and 2nd opinion surgeon. My gut feeling is that my femoral component could possibly be too large….but I have nothing objective to support that, only my various tendon and soft tissue symptoms. And my guess is that a surgeon in another town unrelated would probably think it was ok.

Some of my biggest aha moments came when I got copies of my X-ray images, especially the “lateral” comparing pre and post op views. I can see big differences in mine and it looks likes I have a wad of soft tissue growing into the joint. I believe it is called “anterior interval scarring”. and "peri-patellar impingement". I have a very visible lump of scar below kneecap near joint line. It is gluing my patella tendon down. This lump of scar stutters at around 90 degrees and also the last few degrees as I extend during walking. I have palpable bands running on lateral aspect of kneecap. I feel little lumps surrounding my kneecap. It all adds up to a picture of too much scar tissue jamming my kneecap into the implant …and pain and inflammation while just doing basic things. I am hoping arthroscopy will free things up to move normally. I know every knee is different but thought I’d share because it sounds like we both struggle with pain in the patella tendon area. I feel it every step walking, kind of a catching/grinding. But I also think that your infection must have set you back at least a month or two….and I hope you turn into an ideal regular soon!

 

[cabland]

@NeedaThneed - In my case, I do feel the patella is tight, but not sure if that particular issue is scar tissue or not. It is almost like the implant is large enough that the patella is farther out even at rest and this the tendons are stretched taught. This also limits my total flexion (maxes at 117). I also think the tibial implant may be slightly forward (anterior) thus that forward tissue and tendon from patella to tibia "rubs" on it. The other big issue is in the lateral and lateral anterior "corner" where I feel tissue catch as I move from extension to flexion and back to full extension - this could be too large of an implant or an improperly positioned implant. As I noted, I think I see some amount of internal rotation on my CT scan image.
I think your self-diagnosis sounds pretty feasible. Are you talking arthroscopic with your surgeon yet? You are 2 months farther along than me at this point.

 

[cabland]

In your case, did you feel it was off from the beginning (despite some improvement over time)?

Looking back I suspect it was, but I didn’t know any better in the beginning. At my one year check up I requested my surgical report, thinking it would be a fun read and wondering how much I would understand, after being on Bonesmart for 6 months. I understood more than I expected too, and found out, for the first time, that my surgeon also did a lateral release during my PKR surgery. Long story short, my gut feeling is that something went wrong with that, or at the very least, my ligaments were not properly balanced when putting things back together. None of that shows on my “perfect X-ray.” And no one will order any other tests. ( 3 second opinions)

I should probably make that last post a standalone post here in the recovery forum.

Bonesmart prefers just one recovery thread per member, in this forum. We can change your title to reflect your thoughts, though.

Unfortunate that no one will order any other tests for you Jockette. I've had a CT scan (although that was ordered by my infectious disease doc) and it is very similar to an x-ray, but has dozens of images from every angle (much like an MRI). As an example, there are a group of images that go straight down through my knee with each image being a "slice". There is even a cool 3d rendering on my disc. Attached is just one example image. In this image, imagine I am standing up, at the camera is directly underneath my femur (as though someone were standing on top of my tibia looking up at the underside of the femur implant). The bright white area are the implant (remember this is a thin slice and in this shot you see some bone too). I believe this image shows some amount of rotation of the implant relative to my femur - the implant is supposed to be aligned in parallel to the two "wide" points on the condyle on either side....note the tilt of the patella as well (at the top of the image).

 

[NeedaThneed]

Yes @cabland actually I am expecting a call any day with a surgery date. My theory is that a massive post op inflammatory reaction combined with lack of good movement (quad shut down) to help move the excess blood out of joint triggered my immune system to overgrow tissue. If I’d had infection in soft tissues I suppose it could have also triggered extra tissue growth.

I had wondered also if steroid might have helped me earlier….but my surgeon won’t do cortisone injections due to infection risk; they don’t even want to aspirate. At this point the scar tissue is solid, so steroid would only be a bandaid for me and not be worth the risk.
Anyway, I was offered an open lysis of adhesions, or just a scope, or a scope with option to covert to open if OS found enough damage on my patella cartilage to warrant adding the button. I opted for the least invasive option possible. The studies I found don’t have a high success rate when the button is added after-the-fact. Given my recent “reaction” (suture allergy) I will gladly avoid needing to heal another large incision. And will take my chances that removing the scar will take the load off my kneecap and allow the remaining cartilage there to heal.
Good luck with your OS follow up. Hope they are motivated to help find solutions for you.

 

[NeedaThneed]

Very interesting picture. So OS has seen that picture and says all looks good? Regardless, your symptoms are what matters most and I hope they can offer useful explanations for your pain.

I’ve had many X-rays now on this knee (but not a knee CT) and noticed some subtle differences each time in how the technician positions my knee. On my “skyline” (knee bent, camera pointing towards underside of femur), I had thought my kneecap sits too laterally, but 2 OS’s both said it looks good. They used imaging to rule out gross abnormality; then used their hands-on assessment (lots of poking and prodding while moving my knee) and my symptoms to determine the options going forward (because they find symptoms and imaging don’t always correlate accurately).

 

[cabland]

Yes @cabland actually I am expecting a call any day with a surgery date. My theory is that a massive post op inflammatory reaction combined with lack of good movement (quad shut down) to help move the excess blood out of joint triggered my immune system to overgrow tissue. If I’d had infection in soft tissues I suppose it could have also triggered extra tissue growth.

I had wondered also if steroid might have helped me earlier….but my surgeon won’t do cortisone injections due to infection risk; they don’t even want to aspirate. At this point the scar tissue is solid, so steroid would only be a bandaid for me and not be worth the risk.
Anyway, I was offered an open lysis of adhesions, or just a scope, or a scope with option to covert to open if OS found enough damage on my patella cartilage to warrant adding the button. I opted for the least invasive option possible. The studies I found don’t have a high success rate when the button is added after-the-fact. Given my recent “reaction” (suture allergy) I will gladly avoid needing to heal another large incision. And will take my chances that removing the scar will take the load off my kneecap and allow the remaining cartilage there to heal.
Good luck with your OS follow up. Hope they are motivated to help find solutions for you.

I completely understand wanting to avoid a more complex procedure! I am obviously VERY interested in your outcome. My surgeon did mention the possibility of needing to go in to clean up scar tissue (when I brought it up), but indicated a.) he has only done it a handful of times over thousands of knee replacements, and b.) felt the scar tissue might just return anyway. Like you though, the thought of just "living with it" isn't exactly appealing!

Very interesting picture. So OS has seen that picture and says all looks good? Regardless, your symptoms are what matters most and I hope they can offer useful explanations for your pain.

I’ve had many X-rays now on this knee (but not a knee CT) and noticed some subtle differences each time in how the technician positions my knee. On my “skyline” (knee bent, camera pointing towards underside of femur), I had thought my kneecap sits too laterally, but 2 OS’s both said it looks good. They used imaging to rule out gross abnormality; then used their hands-on assessment (lots of poking and prodding while moving my knee) and my symptoms to determine the options going forward (because they find symptoms and imaging don’t always correlate accurately).

I think he was surprised when I printed out that image and gave him the CT disk. When I mentioned possible internal rotation, He said "Did they (the radiologist) say it was internal rotation? They always say that (dismissingly)." I then told him "No, the radiologist report was worthless as it basically said "Patient has had knee replacement...no sign of loosening" (ugh!). He came back and defended the positioning and said the patellar tilt was normal and the muscles pull it flat in use. I'm still not convinced. However, there is ZERO (even negative with lawsuits, etc.) benefit to a surgeon to admit they may have made a mistake...even a reasonable mistake. The CT scan, while more complex to read than an xray, just had a lot of detail. I'd love an MRI for greater soft tissue impingement discovery.

In the end though, I suspect my options remain the same:

1. Give it time to see if my body adapts "well enough" as @Jockette notes (as mentioned, I may ask for another steroid shot)
2. Have an arthroscopic cleanup
3. Full on revision surgery

I see my surgeon next Tuesday and infectious disease doc next Friday.

 

[NeedaThneed]

My surgeon did mention the possibility of needing to go in to clean up scar tissue (when I brought it up), but indicated a.) he has only done it a handful of times over thousands of knee replacements, and b.) felt the scar tissue might just return anyway.

My OS was initially hesitant to jump back into surgery for same reason that he says it can grow back. But like you, living with it isn’t an option. I don’t want a life of inactivity and all the other health problems to go with it - why we do this in the first place!

But OS and I are both puzzled about “why” I grew so much scar in the first place. I feel that is the most important thing to understand…so steps can be taken up prevent recurrence. And I’m guessing this is a big question for you too?
For myself, I have theories but no proof. What’s bringing in all those nasty little scar-growing fibroblasts and inflammatory cells…(.Is it suture allergic reaction? Low grade localized infection? Poor post op recovery/poor early movement)? And today my bloodwork is positive for rheumatoid arthritis, another possible explanation. But all have different treatments, hence why it’s so important to understand “why”! I’d be very curious to hear what your docs have to say about “why” they think you may have this scar tissue. Clearly they don’t believe it’s a rotation error…so if it’s not that, then what is it? I would hope they could at least be able to explain what they look for in arriving at that conclusion.

How are you doing this week?

 

[WFD]

today my bloodwork is positive for rheumatoid arthritis,

I also tested positive for rheumatoid arthritis (though I don’t express it) and my 23andme data shows I have a bunch of genes that are associated with the disease, and I also have severe arthrofibrosis. That may very well be the cause of your scar tissue. There are some surgeons that when operating on someone like us, will administer anakinra (kineret), a drug used to treat rheumatoid arthritis, to prevent the growth of scar tissue.

 

[cabland]

My surgeon did mention the possibility of needing to go in to clean up scar tissue (when I brought it up), but indicated a.) he has only done it a handful of times over thousands of knee replacements, and b.) felt the scar tissue might just return anyway.

My OS was initially hesitant to jump back into surgery for same reason that he says it can grow back. But like you, living with it isn’t an option. I don’t want a life of inactivity and all the other health problems to go with it - why we do this in the first place!

But OS and I are both puzzled about “why” I grew so much scar in the first place. I feel that is the most important thing to understand…so steps can be taken up prevent recurrence. And I’m guessing this is a big question for you too?
For myself, I have theories but no proof. What’s bringing in all those nasty little scar-growing fibroblasts and inflammatory cells…(.Is it suture allergic reaction? Low grade localized infection? Poor post op recovery/poor early movement)? And today my bloodwork is positive for rheumatoid arthritis, another possible explanation. But all have different treatments, hence why it’s so important to understand “why”! I’d be very curious to hear what your docs have to say about “why” they think you may have this scar tissue. Clearly they don’t believe it’s a rotation error…so if it’s not that, then what is it? I would hope they could at least be able to explain what they look for in arriving at that conclusion.

How are you doing this week?

I think the "why" so much scar tissue seems to come down to "some people just do". Indeed, the whole arthrofibrosis things still seems to be largely a mystery - unfortunately, one often dismissed by surgeons it seems. One thing I have come across is that our bodies may be sensitive to inflammation in general (your positive RA SEEMS to align with that) and MAY respond with increased scar tissue as a result of trauma (aka the surgery itself). Post surgery, aggressive PT (or even just moderate PT) could possibly introduce enough inflammation to aggravate movement and thus result in scar tissue build-up. In my case, my infection did limit my movement early-on. I'm still not convinced that's the only issue, BUT I believe it could be part of the puzzle. I see @WFD has chimed in as well, and man, you've definitely gone through it looking at your signature - seems like your arthrolysis cleanup didn't work and you've had not one but TWO revisions since!! How are you doing now?

As for me this week, I'm a little better, but definitely nowhere near where I had hoped to be. In fairness, however, I did hit a non-trivial (for me) milestone yesterday. I walked NORMALLY (well mostly) down these (shorter height) steps in my backyard (see pic). I have not been able to walk down stairs of any kind normally (have to put surgical leg down straight thus two-stepping on every step) since my November surgery. Doing it the normal(ish) way was pretty darn encouraging (Thank You, Lord!). The "improvement" has centered around the pain and restricted motion I feel below the patella (not to be confused with underneath the patella). This seems to have reduced just enough to let me take those shorter steps. It still isn't fun, but before was impossible.

I see my surgeon tomorrow and I doubt he will have anything new to say. I am going to request another steroid shot to see if I can keep this streak going (or see if it just peters out). Indeed, am going to request one in both knees as my other knee (still pending surgery) is no day in the park.

Finally, I am going to reduce my carbs again (i.e. I have low carbed on and off over the years) to try to reduce those simple sugars and their contributions to inflammation. As an aside, my CRP and ESR get tested every month since the infection and both are at the bottom of the reference range so I don't think I have anything systemic right now, but cutting out the carbs definitely can't hurt (well, except for my cravings!).

 

[Layla]

Looks like you have a beautiful, peaceful oasis for your back yard, cabland
Yay on getting down those steps normally. Wishing you the best with your appointment tomorrow. I hope you're able to receive the injection and it brings long lasting relief.
A great week to you!
@cabland

 

[mendogal]

Those stairs are quite an achievement - I hope the weather cooperates with you getting lots of stress busting backyard time!

 

[cabland]

So...just got back from the appointment with my surgeon. He was disappointed that we weren't able to get the issue with the tissue resolved with the steroid shot and inflammation reduction. We discussed three options:

1. Get another steroid shot and wait to see if it gets better - He wasn't too excited about this option and said he would only try one more shot. This is where I ASSUMED I would be when I came in to the appointment.

2. Perform an Arthroscopic clean-up of the scar tissue - This would focus on all the stuff I feel on the lateral side of the knee, but he would make 3 port incisions - 2 below the kneecap area and one above towards the top of my scar. The latter to try to release any scar tissue above the quad in that area.

3. Perform an Open Lysis of Adhesions - This one came up when I discussed than I only had about 117 degrees of flexion and while that wasn't terrible, I told him I felt like I had a "block" at that point. I was surprised (impressed) he brought this option up. However, he said he would not want to do it for at least a year as he wanted all the inflammation to be as calmed down as possible to reduce the chance of the scar tissue reforming. Otherwise, we would be right back where we are now.

I was VERY appreciative @NeedaThneed had brought these topics up as I spent time researching these options this past week, so when my surgeon brought them up without my prodding I was able to discuss them intelligently! God's provision!

So....drumroll please. I am going back into surgery on May 8th for option 2 (arthroscopic cleanup). I am very hopeful this will address a lot of what I am feeling on the lateral side of my knee. The flexion issue MIGHT be helped, but I am less confident on that part. Either way, much like @NeedaThneed I wanted to be somewhat conservative and this was my best option in the short term.

I continue to be thankful for this forum and the wealth of knowledge AND SUPPORT provided!

 

[mendogal]

That sounds like a sensible path forward!

 

[WFD]

I have had both an open lysis of adhesions and an arthroscopic lysis of adhesions.

The open LOA left me worse off. Experts in treating arthrofibrosis say that people prone to the condition are not suitable for open procedures such as these because the trauma simply generates more scar tissue.

The arthroscopic LOA was much more successful and gave me about 15° more RoM. Unfortunately I had an undiagnosed infection from a previous revision that destroyed the cement holding my tibial prosthetic in place, and it ultimately did a lot of damage to my tibia, necessitating another revision.

I'm glad you opted for the arthroscopic procedure. Recovery should be *much* easier than for the original TKR.