Bilateral TKR 2 years out and facing up to facts

@WFD , what problems were you experiencing? I am under the impression that scar tissue causes stiffness, which I don’t have, withROM in my bad leg of 140-145, less when it’s playing up, a bit more when it’s been super good.
I really appreciate your advice, I’m in no hurry to have a revision but want an opinion from a doctor who is skilled in spotting problems and advising on options.
 
My problem is mainly scar tissue. Of course I don’t know the root cause of your problem, but if your issue is caused by a soft tissue problem then a full revision is an awfully traumatic solution and if it can be solved with an arthroscopic procedure then you are miles ahead in terms of recovery.
 
…and when I read back over your description of the issue I think it is at least possible that the problem is caused by some bits of scar tissue in the wrong spot. Stressing the scar tissue through movement can lead to swelling and pain as I know all too well. Scar tissue, once mature, does not go away, and this could potentially explain why the problem is not improving over time.
 
Thank you, @WFD . I shall bear that very much in mind when trying to shed some light on my problems, and make sure that scar tissue is considered seriously during investigations. I do so hope that it is the case, and perhaps be remedied.
Perhaps @Jamie could help with suggestions for the right kind of surgeon.
 
Perhaps @Jamie could help with suggestions for the right kind of surgeon.
I just want to let you know that right now Jamie is pretty busy getting ready for JRAD (Joint Replacement Awareness Day, an online educational event) happening this Saturday. She may not get back to you right away, and to be honest, I’m not sure how many surgeons she knows outside of the US. We have alerted our other staff members with your request, so we’ll see who has information for you.

You might consider signing up for this event, attendees are able to type in a question to the panel of surgeons, and they will answer some of them during the event. I actually did this last year. You can sign up through the banner at the top of the page here. (The banner alternates with the Lounge Doctor banner, so if you don’t see it right away, just wait a few seconds.)
 
@Ghostpipe .... sorry it took me a while to see your tag. I don't have access to surgeon information outside the USA with the exception of just a few doctors in Canada. @Jaycey may be able to help you locate someone in the UK, so I've tagged her.

I strongly suggest you sign up for our Joint Replacement Awareness Day conference this Saturday. It's at 8:00am EDT which I believe is 6pm your time. It's a ZOOM conference, so here is the link to register. You'll receive a unique ZOOM link that you'll use to sign in on conference day. You can type in your questions to our surgeon panel and hopefully they will address your concerns.

 
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Thank you for replying, @Jaycey. As close to Hertfordshire as possible, will have to have a private consultation.
 
I did a bit of research. I would try Matthew Oakley. He has a private practice at Nuffield Health Hereford and his numbers look very good. He does specifically mention revision surgery for multiple reasons on his website.

Good luck! Please let us know how you get on!
 
Thank you @Jaycey. Is that really Hereford, or Hertford? I will check him out. I think there was mention of one called Khan in Cambridge in someone else’s thread. Khan is a pretty common surname, do you know anything of him?
 
Perhaps you can be more specific about what large city you might want to see someone in.

You are right - there are tons of surgeons with the surname Khan in the NJR! If we can narrow down a specific city it might be better.
 
London, Cambridge or Oxford would be ideal, being the closest to where I can stay with family in the U.K.
Thank you so much for your help, I am in great need of some enthusiasm for the future. I’ve had a really bad day today with ROM at 90, never been that bad before, even right after surgery.
 
Well if London is an option for you I can highly recommend Philip Mitchell. He has a private practice in Parkside and Spire and NHS in St George's and SW London Elective Orthopaedic Orthopaedic Centre (great place - had my RTHR done there). Great guy and very patient centred.
 
Thank you so much, Jaycey. I will arrange to see him. A personal recommendation is indeed a good thing.
 
Went for my first second opinion to an experienced and well qualified ortho and trauma specialist. He doesn’t claim to be a revision specialist, but at least I can get get the tests done.
He has said that the x rays are fine and it doesn’t look like I have infection, but my knee is swollen and inflamed. He said it is possible that I have kept my bad leg inflamed since the start by treating it like my good leg, which I have done to an extent.
So it’s back to basics for two weeks, ice and elevation for ten minutes every hour, slightly weighted leg lifts ( the quad is atrophied due to my avoiding the use of that leg) every hour. And no activity but minimal ADLs. If there is no improvement in two weeks, then he’ll take some fluid from the knee for analysis.
He wanted to start off conservatively, as aspiration is an infection risk in itself.
Everything he said makes sense, so I’ll bear with him for a few weeks, and if there’s bad news, or things don’t improve, then it’s off to London, with all tests completed and on discs.
 
As a fellow knee replacement long hauler I have been following your story.

My knee was doing very poorly until 1 month ago when my doctor gave me a cortisone shot and put me on a 7 day Methylprednisolone dose pack. He said getting the internal swelling down some over a few weeks may allow me to exercise the knee more to strengthen the quad. It worked like a charm and the improvement seems to be holding. The knee is much better. I would ask your doctor if it is worth a try.

I am nowhere near pre-surgery functionality but at least I can walk around and do more stuff as long as stairs and running is not required.
 
Thank you for your uplifting reply, @beesknee. That’s given me hope that this surgeon is on the right track, in breaking the cycle of inflammation. Long may your improvement continue. I wish that he had the same approach as yours, however, I have had quite enough of doing nothing other than leg exercises, icing and elevating. Life is passing me by! What quad exercise are you doing, that doesn’t upset your knee, may I ask? Everything seems to aggravate mine, apart from possibly straight leg lifts, which are sooo boring.
I have another covid rescheduled diving holiday in the Autumn, and am determined to get to the bottom of why one knee coped well will the last one, and the other caused such grief. Meanwhile, I am losing fitness at a furious pace, such as one does at my age with inactivity.
Will definitely talk to him about your treatment when I return to him in two weeks.
 
Went for the two week follow up.
Leg lifting, RICE and rest has done nothing much for my bad knee, but my good knee feels great! So there is something amiss. I have done nothing apart from ADLs for a month now since my diving trip.
The OS drew fluid from my knee, ouch big time. There is blood in it. He seemed surprised at that, and said that it is a possibility that I have an old haematoma in there, and he may need to open it up and flush the joint out. But we need to await the lab results.
Not keen on that course of action after reading the threads from @Stiff knee NC and @WFD.
But I shall continue with him until he comes to some sort of conclusion, then perhaps go elsewhere.
Even with the aspiration of a small amount of fluid, my knee felt much better and was far smaller!
But this morning, it is back to the new normal, and the fluid has returned. If there are any mods who came remember a thread from anyone with either an aspiration or mention of haematoma at 15 months plus, I would be grateful to find those threads.
Is it normal for there to be blood in the fluid taken from a knee?
 
How did your lab results turn out? Any update?

I just saw your question about my exercises. Here is a copy paste with my updated weights I am up to:

Health Club every other day:
  • - All 10 of my standard upper body weightlifting exercises.
  • - 30 minutes at level 12 (out of 20 levels) for 6 to 6.25 miles on recumbent bike.
  • - 85 lb glute exercise 3 sets of 12 reps each leg.
  • - 120 lb leg press. 3 sets of 10 reps.
  • - 50 lb walking weight pull out and back. This exercise involves me holding onto the weight bar and take 10 steps back and then 10 steps forward. The resistance my knees experience during this exercise feels great.
    * I am increasing weights for leg exercises by 5 lbs each week. Right now my legs are at embarrassing weight levels and sometimes a skinny girl will get off a leg machine and I'll need to lower the weight.
    * I eliminated the leg extension and leg curl because I felt these exercises were occasionally aggravating my knee.
At Home on non health club days:
  • Stretch band around leg work doing forward and sideways crawl walks for about 10 minutes.
  • 3 to 5 mile dog walk when I have time. I always try to get at least 5000 steps a day in.
Even though over the past month I have gone up on lift weights ~20 lbs each exercise, my knee does not really feel any better. I have found that Naproxen really helps with pain and stiffness but I need to limit taking it except for the worst days because the next day I will have stomach issues.
 
My lab results were fine, and the chap said that I have high expectations! I find that insulting, it is not a high expectation to be able to walk briskly or stand in a queue for half an hour, go up and down steps and stairs and get up from seated without nasty pain, and daily swelling. I have given myself three months off everything bar ADLs, both knees are slightly better, but not significantly. Have resumed gym and walking up hills, only slightly worse in the evening than when I did nothing.
So it’s going to be a trip to London to a revision specialist to try to find out what’s wrong.
Got two diving liveaboard holidays coming up soon, both rescheduled from the covid period, and paid for. I should be overjoyed to have the privilege of going, but I’m actually terrified of the pain that I know I will be in for, and swimming with one leg after the first ten minutes of every day.

So in conclusion, after 18 months, I have one tight knee that hurts with anything other than walking on flat ground, and one that is downright painful and swells daily. I don’t think that my implants are loose, they have felt stable right from the start. I don’t think that they are infected, no sign of that. I don’t think that I have a scar tissue problem, as my ROM is 100% on a good day before I get up the morning. I believe that my kneecaps are a problem, they were not resurfaced, and there may be a tracking problem with the bad one. As for the soft tissue, no idea!
 

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