Bilateral TKR 4 months, little progress

[Lakelandlass]

I am now more than 10 months post-op and continue to have disability and pain that is so much worse than before. Having been a very fit and avid "outdoors person", whose social life revolved round hiking, cycling & skiing, I now can't really even walk – I just hobble short distances, with tight, painful steps. The discomfort starts if I even stand for more than 10 minutes, so I can't even stand in a queue, or cook. I wake frequently during the night with a painful stiffness, which requires me to get up and move around to relieve. It is painful to flex my left knee to get into a low seat, to climb into a car or start to pedal my indoor bike. Outdoor cycling is out of the question, as is gardening. I can't go down the stairs sequentially. I can't sit low, or kneel, get up from the ground, do any gardening, or walk with friends in the countryside. My life is miserable.

My surgeon saw me only once, in June, to rule out infection or component loosening. He subsequently gave me 2 telephone consultations but is fixated the knee having been overloaded post-op (even though I've done pretty much nothing for nearly 8 months, apart from the exercise bike with no resistance) or me having some kind of complex pain syndrome. I have enough professional knowledge to know that I have precisely zero features of the latter. I asked for a diagnostic ultrasound to look at the soft tissues, since the X-Ray appearance is fine, but he said that I didn't need one because "there would be nothing to see". He actually interrupted my description of my symptoms (which I thought might be helpful in making a diagnosis) to tell me that I was "panicking"! I had to organise my own ultrasound, and there turned out to be plenty to see: – synovitis at the back of both knees (severe on the left, mild on the right); "evidence of Hoffa's fat pad impingement on the left"; and bilateral patellar tendinopathies (severe on the left, moderate on the right). The findings accord with the symptoms I had been describing, had he but listened.

I tried a course of shockwave therapy, possibly with a tiny degree of improvement. The radiologist who did the ultrasound said that normally he would have treated the tendinopathies & synovitis with steroid injections, but that would be contraindicated in somebody with joint replacements because of the potential for catastrophic infection risk.

Can anybody recommend anything else? I'm getting to the end of my tether.

 

[Jockette]

I am so sorry to read of your difficulties at 8 months post op.

He actually interrupted my description of my symptoms (which I thought might be helpful in making a diagnosis)

I can also relate to doctors who don’t listen, my first second opinion, a highly rated surgeon, actually took my notes out of my hand and set them out of my reach, and said, just tell me. I was so flustered at that point I could hardly remember what I had written down. What nerve!!

My second, second opinion did order blood work. He was nice to me. (Bloodwork came back fine.) End of story.

My third second opinion refused to order any tests on my knee, but sent me for a lumbar MRI instead. Yes I have back issues, but they are not the cause of my knee problems since my PKR surgery.

Are you able to see someone else for a second opinion? Here in the US it’s fairly easy, I’m not sure how that goes where you are.

 

[Lakelandlass]

Thank you for replying Jockette. I think I might have lost all trust in surgeons now, I'm quite nervous about the thought of going to see one for a second opinion. My physiotherapist has mentioned one that he seems to trust.

I suppose I do have 2 specific questions, for anybody with experience in such matters:–
1. Do you think that the steroid injection idea is as dangerous as the radiologist seems to think?
2. Do you or anybody know anything about platelet-rich plasma injections for treating tendinopathies?

 

[EalingGran]

The radiologist who did the ultrasound said that normally he would have treated the tendinopathies & synovitis with steroid injections, but that would be contraindicated in somebody with joint replacements because of the potential for catastrophic infection risk.

I think that would really make me hesitate to have steroid therapy- but I guess only you can ultimately decide if your current situation is so bad that the risk is worth it.
I am sorry you have had such a poor outcome. Did the radiologist have any comments on why he thought these problems had developed? Is this somehow related to the knee replacement or preexisting issues that the TKRs just didn't solve?
I think some of us just have to try to be our own detective- to figure out what is happening.

My physiotherapist has mentioned one that he seems to trust

I would probably consider getting another opinion from someone recommended. I understand that you are not keen on surgeons right now though.
Sorry- but I don't have any experience of platelet therapy but I think from the little I have read that it is a bit experimental.

 

[Jockette]

I think I might have lost all trust in surgeons now, I'm quite nervous about the thought of going to see one for a second opinion.

I totally understand this. As I said, I’ve had 3 second opinions, and they are indeed nerve wracking. It’s bad enough that we feel the need to get another opinion, and the thought of another surgery, after an unsatisfactory outcome, is certainly even more nerve wracking. Then when they find nothing to fix, or they won’t even look for a cause, is definitely cause for mistrust. But, apparently there are good surgeons out there who are very helpful in these cases, we do have members who have been helped, I just haven’t found one yet. I’m managing well enough that I’m not looking anymore.

 

[EalingGran]

1678090https://pmc.ncbi.nlm.nih.gov/articles/PMC5004020/

This is a good article on the science behind platelet therapy
There does seem to be some evidence- although the clinical trials are a bit less encouraging.

 

[Layla]

I am sorry for your pain and struggles, Lakelandlass
Not everyone has bad luck with second and third opinions, so please consider seeking a second opinion and even a third opinion if necessary. It is your recovery and if something doesn't feel right, it's valid to question it. There are many good surgeons out there.

A second opinion may confirm what you've learned or provide new insights. A fresh set of eyes may catch something new, or spot a detail that was overlooked, or view your symptoms differently. Trust yourself and view any additional opinions as self care. You endured the surgery to improve how you feel and function so its worth exploring other options in an effort to remove any issues and more forward without discomfort and pain. You deserve the best care and a second opinion is a proactive step in the right direction. I wish you only the best and hope you'll keep us posted. We're here for you!
@Lakelandlass

 

[Jamie]

If you have the name of the surgeon that was recommended to you for a second opinion, you can give it to your GP and ask that he prepare a referral for you. You have the right to additional opinions from the doctors you want to see. I agree it can be challenging to find the right doctor, though. You may have to drive to get to one of the larger hospitals at some point. But….as it doesn’t appear that things are going to improve on their own, to me it would be worth it to find a new surgeon who is interested in helping you now that you have a diagnosis. Getting that is half the battle. Good for you for taking the reins and getting the tests done.

No one expects to have this type of problem following a joint replacement, but it does happen sometimes. You do deserve answers and someone who cares making recommendations for treatment. Don’t give up. That person is out there.

 

[Lakelandlass]

Thank you all for your interest, empathy and suggestions.

 

[Legseleven]

How are you getting on @Lakelandlass
Have you any updates?
Hoping for better news for you
x

 

[Lakelandlass]

Hello Legseleven, I'm just reading your post from June.
I haven't been on this site for a long time, because I found it too upsetting.
However, I thought I would post a recent update, in case this is useful for anybody.

I have read your own thread, and see that perhaps you were looking for opinions as to whether you should proceed with a bilateral procedure or not. This is too late for you now, but maybe just as well, since it would have been overwhelmingly negative. And we had different procedures too. I read that it hasn't been plain sailing for you, but hope that you do progress well overall.

As to my own update: I have endured 20 months of horrible disability. My original surgeon basically gaslighted me – wouldn't see me in person, ignored my physiotherapist's email requests for advice, downplayed my symptoms & blamed them on my doing too much post-op rehab, and also on my attitude (even accused me of "panicking"!). He blocked my access to investigations ("they won't show anything"), and fobbed me off with "reassurance" – "[he's] sure it's nothing structural" and "it will get better over time". Eventually, realising his advice was worthless, I managed to obtain a private ultrasound scan, and when abnormalities were revealed, I actually cried, just to know that it wasn't imagined.

An ultrasound scan looking deep into the knee isn't the easiest to interpret, since the beams can't penetrate bone, so the operator just gets glances of what is going on via "windows" between the bones. However, the radiologist said that it was the worst inflammation he had ever seen in a post-TKA knee, and he thought that some soft tissue was getting crushed between the lateral rim (or "facet") of the patella and the lateral knuckle of the femoral prosthesis.

After that, I did a lot of reading and experimenting and, about 6 months ago, learned a taping technique that, if I got it right, was able to tilt the patella away from the lateral side, with some partial symptom relief. That allowed me to do a few minor things, eg walk about half a mile with not quite as much pain. However, I was still waking up frequently with pain at night, and still much more comfortable with my legs elevated than sitting upright in a chair.

I still had some difficulty getting taken seriously, but eventually found a new surgeon who was sympathetic and prepared to take me on. To cut a very long and arduous story short, he agreed that the ultrasound appearance and my symptoms were an indication that the lateral facet of the patella (which overhangs the resurfaced "button") was scraping along the femur; and that the infrapatellar fat pad was getting trapped and crushed between them. So, 11 days ago, I underwent an arthroscopic procedure on the most symptomatic knee, with resection of the patellar rim lateral to the button, and removal of all the fatty tissue clumped underneath the button – which shouldn't have been there at all, since the latter is supposed to glide unhindered up and down the groove between the 2 femoral knuckles ("condyles) when the knee flexes.

Before the procedure, the surgeon had been very particular to warn me that he thought there was only a 50/50 chance of improvement – and that things could always be made worse! He marked on the skin where I'd pointed to as feeling to be the source of the pain; and post-op confirmed that where the work had been necessary corresponded exactly to that area. I then had 2 brilliant nights sleep, and started to get hopeful. Unfortunately since then, my knee has slowly become swollen, bruised and got that tight and inflamed feeling back. I also have pain in my thigh – probably tourniquet-induced (which I'm prone to), since it was on for a relatively long 1 hour 19 mins. A few symptoms have improved – eg, it now doesn't hurt to pull my socks and shoes off, and this morning I managed to walk downstairs with alternative legs, albeit with some support from the banister. So, it's early days, and perhaps I shouldn't get despondent yet.

 

[EalingGran]

It actually sounds pretty positive that your underlying issues have been tackled. I wouldn't get too discouraged by postoperative swelling and tightness. This is after all another surgical procedure with its own recovery period. Take it easy with gentle exercises. I think being able to walk downstairs normally so soon after surgery is brilliant.

 

[Legseleven]

It’s early days from your recent surgery @Lakelandlass. Hopefully in time it’ll settle for you. I hope so. Go steady though as there’s likely to be temporary post op inflammation.
My physio, as BS repeats, says 12 m. I have little wins, and I do know the healing is proceeding in the right direction, albeit slowly. I still get very tired too.
Well done for persevering. I am lucky as I have faith in my physio and know he’ll refer me on if required. I think for me it’ll be fine, it’s just time, and I see the OS in Jan for my 6 m check.
Wishing you well. Please keep us updated.

 

[sistersinhim]

I'm so glad your new surgeon was able to locate and clean up the mess inside your knee. Which knee is it, and what was the exact date of the new surgery? Do you know what the surgery was actually called? Did he do a revision?

 

[Layla]

Hello Lakeandlass,
I am sorry for all you've been through. A difficult journey for certain. It's good to read that a few symptoms have improved. I hope given more time, you are feeling even better. Please keep us posted on your progress.
Wishing you all the best!
@Lakelandlass

 

[Lakelandlass]

I'm so glad your new surgeon was able to locate and clean up the mess inside your knee. Which knee is it, and what was the exact date of the new surgery? Do you know what the surgery was actually called? Did he do a revision?

Thanks for all recent replies.
The date of the new surgery was 18th November 2025, and the procedure was "Left Knee Arthroscopic resection of overhanging lateral patellar facet with debridement of impinging Hoffa's Fat Pad". In the orthopaedic literature, "revision" seems to have rather a loose definition, but it was only my native bone (and soft tissue) that was debrided. The original prosthetic components were left in situ.
I will let you know how I get on after a few weeks, as it feels too inflamed at the moment to make any predictions.

 

[Legseleven]

Good luck with it all. We are here for you.

 

[Layla]

Hi Lakeandlass,
Stopping by on this milestone date to see how your doing? I hope the last couple weeks have been better for you.
Wishing you a Happy One Month Anniversary, a Merry Christmas and brighter days as we begin a new year.
Take good care and let us know how you're doing when you have time.
@Lakelandlass

 

[Lakelandlass]

Thank you Layla, that's very kind of you to ask.
I'm improving very slowly. I can mostly sleep at night. I can walk down stairs sequentially – it hurts a bit at the front, but I couldn't do this at all 5 weeks ago! The knee feels much more normal in "function", but still very inflamed, which I think will take some weeks, possibly months to recover. I'd say I'm about half-way between what I was 5 weeks ago and what I was before my knee replacement (which wasn't great, obviously, just not as dreadful as it became). But still improving, so fingers crossed.

 

[sistersinhim]

Improving is the way to go! Good going.