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

[cabland]

Hi all - sorry for the delayed update. While I have been busy with helping my mom (getting all the finances, pensions, SS, etc. stuff moved to her as well as dealing with all the account minutia), I haven't updated mostly because I was wanted something "new" to say. While I still don't have a lot of "new", today is the 11 month anniversary of my knee replacement and a few days past the 5 month anniversary of my arthroscopic scar tissue cleanup so here goes...

1. Thank You - First, let me just say thank you for the prayers, thoughts and kind words at my Dad's passing - much appreciated.
2. Knee Infection Update - I completed the 6 months of daily oral antibiotics from my original knee infection (after my replacement in November) at the end of June. My labs in July showed no inflammation markers - hooray. I saw the infectious disease doc at the end of June and I will see them again in November.
3. Function / PT - I saw my surgeon's PA around the end of July. I told her I was having material pain near the top of the fibula and on the lateral side of the knee so, of course, she wanted me to do PT. In addition, I still could not walk downstairs normally. As I'm on new insurance, that required a referral from my primary care doc (note: my orthopedic surgeon is NOT on my new insurance so his "referrals" don't count...and yeah, I'm paying him out-of-pocket!). As an aside, I did request (and got) an x-ray just to make sure nothing had changed there - it hadn't. I went for my initial PT eval in mid-September, promptly pulled my back (unrelated to PT - hooray for getting old) and had to delay starting until the end of September. I have been reasonably good at doing my exercises at home and am seeing some progress. Indeed, most notably I have been able to cautiously walk down a few steps somewhat normally, and the pain near my fibula and lateral side has reduced a small amount. As an aside, I do seem to have at least a couple more degrees of flexion post arthroscopy...I think I can get even more.
4. Continuing Issues
   1. Pain / Warmth - I continue to have pain predominantly in the lateral side of my knee and in the anterior lateral corner. This area also gets warm. Indeed, I have attached a pic and you can see the front outer corner of my knee sort of "pokes out" - heck, it casts a shadow! I am guessing that area that you can clearly see (my wife refers to it as my "shelf") is either a.) a block of scar tissue that was not addressed in the arthroscopic cleanup, b.) an oversized implant, c.) a misaligned implant (perhaps the excessive internal rotation I believe I see on the CT scan). It really all just feels like a bunch of soft tissue inflammation as noted in my prior posts. Indeed, my knee is still perpetually swollen and stiff (and worsens throughout the day).
   2. Movement/Instability - I mentioned I had more notable clunk after the arthroscopic cleanup and this is still true. It also seems to be accompanied by some amount of pain and instability. I am hopeful the PT strengthening will improve this...we'll see. As noted, I just started being able to walk down a few stairs so will continue to work on this.
5. Next Steps
   1. More PT - I have 2 or 3 more weeks of PT left. Seems to be helping with function if nothing else.
   2. Surgeon Follow-up Visit - I see my surgeon at the end of this month. I will bring up the continuing issues, in particular the "shelf". My "psychic friends network" prediction is he will dismiss it as "normal" OR say "it's just scar tissue". If the latter, I don't think he will have a great answer as to why it wasn't cleaned up during the arthroscopic surgery. I suspect he will give me the classic "let's give it more time" and "let's try some more PT". Yeah, I'm more than a bit jaded at this point...but the Lord does tend to surprise me so we'll see. I am a little "stuck" here since if he recommends more surgical cleanup, I likely won't be able to leverage HIM to do it since he isn't on my insurance and not sure I really want to drop $5-$6K+ w/o it! That brings me to my next section...
6. The Bonus - If you remember how all this started, I was originally supposed to have BOTH knees replaced last November, but an insurance mess up (or perhaps the Lord's intervention) meant my right knee was not approved by my insurance (note: it was subsequently, but all that was put off). Anyway, as I suspected, my right knee has now rejoined the pain party and is acting up quite a bit. I will get to "start over" with yet another surgeon and have been putting that off while I TRY to get my LTKR knee in better shape (plus I'm more than a little leery of doing the right knee without demonstrated success for the first knee - that just feels like "fool me once shame on you, fool me twice shame on me").

So that's it for this update. Some progress, some not and my other knee is not great. Getting old for the win. Praying for progress, patience, relief and wisdom (for both me and the surgeon(s)) on next steps.

Thanks Folks - and I will try to update a little more frequently going forward!

Pic: (arrow points to my "shelf" and you can see knee is materially larger than other knee)

 

[EalingGran]

My labs in July showed no inflammation markers - hooray. I saw the infectious disease doc at the end of June and I will see them again in November

Glad the infection has settled but sorry your function isn't better.
If it's any consolation it took me about 6-7 months to go downstairs stairs normally and I would count your arthroscopic surgery in your recovery. I found fairly gentle quad strengthening with pilates the best help.
I see what you mean by the "shelf"- will be interested to hear what your surgeon says.
Thanks for the update. I know how tough it is helping sort out family finances after a death.

 

[Rockgirl4]

@cabland I'm so sorry you've had to endure so much this past year. You've been put through the wringer, came out the other side, and I understand 100% why you'd dislike the idea of doing it over again.

My only thought was your mention of instability & feeling like the knee was extra clunky/loose. I had a similar experience after my LOA in 2016 & an MUA the week after. I woke up the day after MUA with my quadriceps muscle completely freaked out. The leg was swollen to twice its size (at least it looked that bad to ME!!!!), & my upper leg wouldn't cooperate at all. My surgeon, PA, and PT all agreed it was probably because of 4 procedures in <6 months time (3 surgical---a big 7 inch incision & 2 arthroscopies) .

I was forced back onto crutches, as my leg kept wanting to buckle under me. The knee just felt completely unstable, almost like it wasn't connected inside. They said it was ALL quadriceps weakness from so many surgeries, & the leg just needed rest/time. Sure enough, over the next 2-3 weeks, things improved. It was a process to get there though--- 9-10 lidocaine injections into the quad muscle for pain, 5 days of oral Toradol (a "mega" anti-inflammatory), 3 weeks of oral steroids, no weight bearing for 7 days, then weight-bearing with 1 crutch the following 7 days, but letting the crutch take some weight.

I say all of that because I HOPE you're just dealing with a quad muscle that needs time to build/strengthen again. I've met a few other people with similar stories.

Last but not least, I'm so sorry for what you went through with your Dad's illness/passing, while in middle of your own medical crisis. My mom passed away the day before I was supposed to have my first TKR back in Dec 2018. Her illness came out of nowhere, I had 3 days to decide what to do when she went on hospice, and I'm glad I canceled, as I had wanted/needed to be there those last 2 days. I spent the next 4 months with all of the financial craziness while waiting for the TKR that we rescheduled for May 2019. It just reminded me again there's never a good time for a crisis, but we persevere, don't we?!

I'm glad you're on the other side of things now, though I know it's slow going. I'll be thinking good thoughts and praying you get more relief soon.

 

[sistersinhim]

I can see that you are still quite swollen. Be sure to ice and elevate as often as you can to try and get that swelling down. That should also help with your pain. As far as that bulge, it could be a pocket of fluid. Have you tried massaging it to try and get it to move?

 

[cabland]

I can see that you are still quite swollen. Be sure to ice and elevate as often as you can to try and get that swelling down. That should also help with your pain. As far as that bulge, it could be a pocket of fluid. Have you tried massaging it to try and get it to move?

Yeah, the overall "round knee" swelling has been pretty constant since my original surgery - I think a little bit less in later March and April ( I had a steroid shot in March which I think helped there, but of course I then rolled into the May surgery, etc.). No amount of icing seems to really help the swelling (heck, I am icing right now as I type this!), but it does feel better while icing at least.

As to the "shelf", unfortunately it is pretty hard and not very malleable...I have definitely tried. You probably can't tell, but that location, is also where one of the three ports was for the arthroscopic surgery. The "shelf" was there before, but definitely seems worse...which seems to bolster my "scar tissue" theory. I didn't massage that area much early on given the other port had split open and bled early on so I was try to be careful...sigh! In retrospect, I would be more on top of that if I went under the knife yet again. I "pokes out" more when the knee is bent which makes sense to me since that is when that area is stressed and I think the implant or spacer actually pushes it out...I actually have a pic of my knee bent with the implant in place DURING the surgery (i.e. before it was all sewn up!) so I can actually see what I am describing a bit from an implant perspective. I can share that pic too, but it might be a bit much for some folks!

 

[sistersinhim]

No amount of icing seems to really help the swelling

Are you elevating toes-above-nose? Having your knee up high helps that fluid to drain down.

As to the "shelf", unfortunately it is pretty hard and not very malleable

I have no idea what this could be.

 

[almostready?]

Hi @cabland - I have a mini shelf too! I think it’s the edge of the tibial implant. It’s a bit disconcerting. It’s less obvious now that the general swelling has decreased a lot (4 months out).

 

[cabland]

No amount of icing seems to really help the swelling

Are you elevating toes-above-nose? Having your knee up high helps that fluid to drain down.

As to the "shelf", unfortunately it is pretty hard and not very malleable

I have no idea what this could be.

I'm guilty of NOT elevating toes above nose (and I even have a lounge doctor pillow). I did in the early months but I couldn't tell it was really helping...maybe I'll make a more concerted effort to try it out over the next few weeks...at least in the evenings. I may ask my surgeon for another steroid shot when I see him at the end of the month just to try to help break the cycle of pain/swelling again...we'll see if he goes for it.

 

[cabland]

Hi @cabland - I have a mini shelf too! I think it’s the edge of the tibial implant. It’s a bit disconcerting. It’s less obvious now that the general swelling has decreased a lot (4 months out).

It may very well be that as the tibial implant is supposed to be just shy of the edge of the tibia. In my case, when I look at my xrays it appears to either be even or slightly over. Minimally, it may be a part of the equation.

 

[Layla]

In regard to swelling -
It is our lymph system that rids the body of fluid (swelling). So you want to get the fluid to the lymph nodes in your torso area so your body can more quickly process it. The lymph system works rather slowly on its own and much more efficiently with the assistance of gravity. The fluid isn’t draining into the hips, but contained with the lymph system and moving to the torso and lymph nodes located there.

So...your idea of spending more time elevating with your Lounge Doctor sounds like a good one!
A great week to you, cabland!

 

[cabland]

Quick update - Saw both my surgeon this past week and infectious disease doc. The visit with the surgeon (5 days ago now) went sort of how I anticipated. Salient items as follows:

• I explained the pain, swelling, heat I was feeling along with some of the instability issues. I also asked about the "shelf"
• He indicated the shelf was likely bone and tissue. I asked why it wasn't there before the surgery (particularly the bone) and he basically dismissed it with "they all look different afterwards".
• As to the other symptoms he decided to give me a steroid shot to try to get it under control. I actually convinced him to give me one in the OTHER knee too. I was definitely wired that first night!
• He "concluded" by saying "at some point this is as good as it is going to get - it isn't like your original equipment"....the irony there is I would be happy to have my original "bad" knee back at this point.

The infectious disease doc (well, the PA actually) went as usual - labs (CRP and SED rate) are fine and they said they could order a CT scan or MRI for the pain, but I had a CT scan done in March (I think) and honestly, the interpretation was underwhelming ("i.e. patient has knee implant - no issues"), so I told her I didn't really feel like dropping another $800+ on a mediocre read. Still, I have it in my back pocket.

As to the next steps, well, I THINK it looks like this:

1. See if steroid shot does anything to allow me to rehab more (so far not much relief from the shot...but maybe starting to feel it a bit). Will continue to try to strengthen. I suspect that's where I will be through the end of this year.
2. At the beginning of next year I will likely:
   1. Find a new surgeon - I can tell my guy is basically done with me (as expected), but more importantly, he isn't on my insurance (as of this past June) so...I basically have to find someone else regardless...especially if anything significant has to be done. Minimally, I need a new surgeon for the RIGHT knee!
   2. Change infectious disease doctor - I've actually only seen my actual ID doctor twice over the last year (PA the rest of the time), but my wife's nephew is actually an infectious disease doctor and I talked to him a couple of months ago and he discussed a number of things he can try to pinpoint any issues that might still be there. I likely would have used him from the get-go, but when you come down with an infection, you don't exactly have time to go doc shopping.

Anyway, praying I actually DO improve between now and the end of the year and I can then just focus on the other knee! (Trying to trust in the Lord and just REST in Him for a change...hard for us "problem solvers" you know!).

 

[Jockette]

the irony there is I would be happy to have my original "bad" knee back at this point.

I sure would love my previous bad knee back!

I think your plan to change both doctors is a good one.

Trying to trust in the Lord and just REST in Him

This is where I am at this point. Sometimes He allows certain circumstances in our lives and we may never know the reason. My PKR is much worse than my knee was before surgery, but it is what it is. In my case it’s manageable and I’m glad it isn’t any worse! Sending prayers for good decisions and healing.

 

[Layla]

Anyway, praying I actually DO improve between now and the end of the year and I can then just focus on the other knee! (Trying to trust in the Lord and just REST in Him for a change...hard for us "problem solvers" you know!

I love your plan! The Lord created your knee and He can heal your knee. Although it will never match the natural one He gave you. My surgeon's PA clarified that with me early on, but assured me it gets very close.

If interested in sharing the closest major city you live near, either here on your thread, or via PM with, Jamie, from Admin, she may have a recommendation for an OS in your area.
Prayers for clarity and wisdom in the decision making process and wishes for your comfort on those painful days.
Please keep us posted. We're here for you always, cabland.

 

[cabland]

Anyway, praying I actually DO improve between now and the end of the year and I can then just focus on the other knee! (Trying to trust in the Lord and just REST in Him for a change...hard for us "problem solvers" you know!

I love your plan! The Lord created your knee and He can heal your knee. Although it will never match the natural one He gave you. My surgeon's PA clarified that with me early on, but assured me it gets very close.

If interested in sharing the closest major city you live near, either here on your thread, or via PM with, Jamie, from Admin, she may have a recommendation for an OS in your area.
Prayers for clarity and wisdom in the decision making process and wishes for your comfort on those painful days.
Please keep us posted. We're here for you always, cabland.

@Layla - I'm in the Dallas / Ft. Worth (Texas) area. I have seen Gerhard Maale's name on here a couple of times, but unfortunately, he is not on my insurance (note: there are tons that are in my insurance...can't shake a stick around here w/o hitting one). I have a few other names, but it is very difficult to really nail down "great revision" guys - definitely open to suggestions!

 

[Layla]

Ok, let's draw @Jamie from Admin in and see what she has for resources in your area.
Check back as she is often busy, but she will respond. I hope you have a peaceful week.
@cabland

 

[Jamie]

Here are some possibilities in the Dallas area for you to check out. Both are surgeons our CEO knows personally. If you locate surgeons that you’d like us to check out for you, just post their names and I’ll see what I can find.


Dallas, Texas

Dr. Michael Huo
Parkland Memorial Hospital
5200 Harry Hines Boulevard
Dallas, Texas
Phone: 214-590-8000
Primary and revision hip and knee surgery. Does gait analysis.


Plano

Dr. John Barrington
Plano Orthopedic
5228 W. Plano Pkwy
Plano, Texas
Phone: 972-250-5700
Primary and revision hip and knee surgery.

 

[cabland]

Hello All - Apologies for the lack of updates (I know you were missing them - hah!) - is it too late to say Happy New Year?. Here is the latest:

Symptoms
1. Pain, swelling, stiffness, heat & clunkiness - As noted, I got the steroid shot at the end of October (got one in the other knee too) and let the Lord run with it. I also started taking some "leftover" Celebrex I had (200mg once a day). Surprisingly, for the first time, I noticed the knee wasn't hot 24X7 and function improved. I would say it is about 20% better - ME of little faith it seems! Unfortunately, it has plateaued (note: I also ran out of Celebrex a week ago which may have something to do with it, but even before then it seemed to have stopped improving). The "heat" is mostly concentrated in the "shelf" area in my picture above (which, I think, reinforces my thoughts around the implant having excess soft tissue impingement). My non-surgical knee is continuing to get worse which isn't helping either...ugh! Praise the Lord regardless (seriously)!

Next steps
As noted previously, my surgeon is no longer on my insurance so I need a new one. As such, I have made an appointment with my primary care doctor for the end of this month (should have started this sooner) and hope to:

• Meds - get a refill on my Celebrex (note: he wasn't the original prescribing doc so I need to see him)
• Infectious Disease Doctor and Orthopedic surgeon referrals - hope to get an initial referral to a new infectious disease doc who I am confident will determine 100% if there any infection-related issues (note: I do not believer there) and then from there go to a new surgeon (or surgeons to get more than one opinion). I have several names (they really are a dime-a-dozen around here) and everyone declares "mine is the best" so I'll need to narrow it down. Kurt Kitziger is one and Alexandra Callen is another possibility along with Mark Greenberg (in truth I have 4 or 5 others on the list as well). I had seen John Barrington at one point a few years back for my right knee, but he didn't feel it warranted replacement at that time and was only really interested in doing replacements so I moved on from him (note: it doesn't matter anyway as he does not take my insurance either)..

Anyway, I continue to appreciate the advice and prayers! Hopefully, the next update won't be 3 months away! Please pray specifically that I will select the RIGHT surgeon and the Lord will give him "eyes to see"!

Thanks!

 

[EalingGran]

Sorry you still have such issues.
I hope you can get back on the Celebrex as it seemed to help a bit.
Is the heat improving at all or is it pretty constant?
What can you do in terms of walking and general activity?
I would suggest doing the Oxford Joint score for each knee before you see a new surgeon. It will help clarify the issues for you and them regarding further surgery.
Also try keeping a diary of specific problems/ triggers and anything that helps. Just so you can try to make the best decision on future plans.
Good luck!

 

[cabland]

Sorry you still have such issues.
I hope you can get back on the Celebrex as it seemed to help a bit.
Is the heat improving at all or is it pretty constant?
What can you do in terms of walking and general activity?
I would suggest doing the Oxford Joint score for each knee before you see a new surgeon. It will help clarify the issues for you and them regarding further surgery.
Also try keeping a diary of specific problems/ triggers and anything that helps. Just so you can try to make the best decision on future plans.
Good luck!

The heat did improve after the steroid shot/celebrex regimen and continues to have improved (with the exception of the location of "the shelf" in my pic above). Still, it was hot all over and only warms up now overall if I do a lot and then cools back down. I averaged 7000 steps a day for the month of January (below my 10K goal, but considerably better than a few months ago). Having said that, the "quality" of that experience isn't great. I am still very aware of every step in terms of discomfort and once I hit about 15 minutes in a row, I REALLY want to sit down. In short, it it a very purposeful effort to get those steps. I can also walk up and down stairs now "normally" (not 2 feet on one step) with some discomfort - at the start of the day, I often have both feet on one step and the same at the end of the day, but again, an improvement.
Good suggestion on the Oxford score and tracking what I can can't do ) - note: some of this is now being impacted by the other (non-surgical) bad knee so my gauge of progress on the surgical knee is getting harder.

Thanks!

 

[cabland]

OK, here is my latest update. I saw a new infectious disease doc in March and while he felt he could do more complex tests to rule out any lingering infection, his recommendation was to see a new surgeon, so TODAY I saw a new surgeon and we discussed both my knees, history, etc. Based on the printed excerpt I showed her of my CT scan (see my post here: CT Scan image ), her belief - as I suspected - is that the implant is indeed internally rotated (note: this would have occurred at the time of the surgery)...I believe the word she used was "significant", but she will have to review the CT scan disc and do exact measurements to be sure (Tip - WHENEVER you get imaging, ALWAYS, ALWAYS, ALWAYS get your imaging CD!).

However, as a first step, she will draw fluid from the knee (scheduled for next week) and run a newgen <sp> test - basically a combo of a culture and a genetic test that detects any "foreign" genetic material (i.e. genetic material from bacteria). Once that comes back, we'll go from there. If there is no infection, and the rotation is deemed to exist and be a cause of my issues, then I will be in the unenviable position of deciding whether it is bad enough to pursue a revision. If there is an infection, we'll see where that goes.

As to my other knee, she didn't think it was bad enough to warrant a TKR (ugh), but given my ongoing issues, I'll be getting an MRI next week.

The journey continues...more to come!