Revision TKR Kandy's Journey

EalingGran

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But often, time gets away from me and I realized I have sat for a 2 or 3 hour period. And then, I am so stiff I can hardly walk
I don't work much these days but still sometimes have to sit in video meetings for 2- 3 hours and can't switch off.
I pop my cryocuff sleeve on at the beginning and that helps. Also I do ankle/ foot movements regularly. If I had to do it daily I would consider getting some kind of tiny foot pedaller under the desk.
Moving the leg gently definitely helps with the stiffness of sitting. In the evening watching TV I rest my foot on a rocking stool ( my daughter used it with a rocking chair for nursing her baby) and it really helps prevent stiffness.
 
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Kandy

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Hello sweet friends,

It has been almost 2 weeks since I was last here. I had a heart ablation for afib two weeks ago. Boy, that kicked me off the block more than I expected it to. Felt like elephants were dancing on my chest for the better part of 5 days. I still get out of breath more easily than before, but I know that will only get better.

It is 6 weeks and 4 days post op from my revision. Tomorrow will be my "6 week" appointment and the first time I will see my surgeon since the morning of surgery. Though I did not see him while in the hospital, he did call me and spoke directly to me while I was there. I have so many, many questions, but I need to prioritize in case we don't get to all of them.

My struggles: Today was my first day back in the office and I long to be home where I can ride my bike mid day, ice, and elevate. But, I do enjoy being around my co-workers. Balance is a hard word. I am finding that I do too much on the weekends, but feel like it is never enough. I sit and take breaks, but feel like I am wasting the minutes away. I struggle to get good sleep. I have been trying to keep good sleep habits... I am sure you know them. On "good nights", I remember waking up 3 to 4 times to reposition to alleviate the pain. On "bad nights", I count waking up 8 to 10 times to reposition and ease the pain. I was only taking a half tablet of pain meds at night and thought that might be messing with me. So, I opted for just ibuprofen and an occasional benadryl for sleeping. I think the night pain follows what I did during the day (too much activity = high amount of night pain).

I have graduated from my cane, but still keep it near when I have sat too long or am getting out of bed, as I struggle with the pain and stiffness. PT is going well, and I have met the criteria to graduate to the next phase of treatment,, which is working on increasing strength.

I had a setback last week with swelling and pain. The clunking seems to get painful when the joint effusion is up. I also experience buckling, but it is only once or twice a day. It makes me cautious about celebrating the improvements. PT thinks it is perhaps scar tissue building, but I am nervous it could be more like last time.

I struggle with maintaining a positive attitude, though I am mostly a positive person. The more I have read about the diagnosis that led to the revision (flexion instability), the more I have learned that acute flexion instability is most often the result of bad technique. There's that. There's also the synovial biopsy, the recalled plastic insert (for faulty packaging that can lead to oxidation), and the "fibrosis and chronic inflammation due to foreign body particles" diagnosis on the biopsy. So, even if there wasn't instability, I would likely be needing to have a revision in the near (2-3 years) future because of the reaction my tissue was having to microscopic debris in the joint. I am reaching out to an attorney, but even that takes precious energy.

I will post later this week after my appointment. Hugs, sweet friends!

I just want my life back and to go through the day without my knee being the biggest weight on my mind.
 

EalingGran

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has been almost 2 weeks since I was last here. I had a heart ablation for afib two weeks ago. Boy, that kicked me off the block more than I expected it to. Felt like elephants were dancing on my chest for the better part of 5 days. I still get out of breath more easily than before, but I know that will only get better.
Crumbs! You have been through the mill. Not surprising that you feel rough at times. I had septicaemia recently and it took me a while to recover. But I was further along from my knee surgery and I only work from home 1 and a half days/ week. Sounds like you are coping amazingly to be back in the office after a knee revision and an ablation.
Sorry about the issues with your implant and the flexion instability. Hope your surgical appointment gives you some of the answers to settle your plans.
 
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Kandy

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Thank you EalingGran! I hope you are doing better from your septicemia!

I had a good 6-week post op appointment last week. He said the popping noise is scar tissue and tracking from my knee cap. It is a little painful when I walk and that happens. He thinks with time (and quad strengthening), it will get better. So, he wants me back in 6 weeks to make sure that has improved. Surgeon cleared me to start Phase 2, strength training.

We talked about the condition of my knee when he opened me up in surgery. He said, no doubt, it was 100% the fault of the first surgeon for not balancing my knee properly, that it was rotated out of alignment by about 6 degrees. He had to put some spacers in to get it to align enough to be considered functional. That was both a blessing and a curse to hear.

It relieves me of any doubt or guilt that I didn't try hard enough or didn't push myself enough, or even that I pushed myself too much. It makes sense that things were not quite right from the get-go. But, knowing this also fuels the anger that my original surgeon would condemn me to a life of pain and diminished quality of life because he would not recognize that something was amiss. It's like a tape replaying in my head: "Implant and alignment looks good. Everything checks out. Sometimes, people don't get better after a TKR and you may be one of those rare people." It's in my head and won't get out. Flowers do not bloom where bitterness grows. I need to work on this. Though, forgiveness doesn't mean that you remove accountability.

Then, there is the implant. I would have likely needed the polyethylene replaced within 3 to 5 years because of the microscopic debris and my reaction to it. But, that would have been a little easier surgery than the full revision.

Enough negativity. Good news: At 7 weeks and 3 days post-op, I got to 130 deg on my own. I have been at 0 deg extension for probably a good month now. This recovery is so different (and better) than the first one. I just did not know how bad the first one was, and was quick to blame the outcome on my efforts. I am doing what I am supposed to, but do not stress about missing a day of exercise. I am doing an hour of daily exercise. I am pretty weak in the quads, but am getting there.

The sleep demons still visit at night. My surgeon said it's okay to take a prescription pain med at night and offered to prescribe more if I ran out. I have plenty, but it felt good for him to give me permission.

All in all, I am happy at where I am in recovery.
 

EalingGran

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Sorry your first surgery left you with so many problems. As you say though, at least you know it wasn't your fault for doing too much/ too little....
Glad this recovery is better and your ROM is really good. Good luck!
Yes thanks- I have made a really good recovery from my septicaemia. It was a bit of a freak episode. Happened after a biopsy the day before but nobody is sure if it was related or coincidence.
I have a slightly low white count so may be a bit more prone to infection and seem to have been getting a lot of coughs/ colds post the pandemic as well. There has been some interesting discussion on another thread about post pandemic immunity and also post surgery immunity.
 

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What an inspiring update. You are further ahead with your revision than I was after 6 months with one of mine in terms of pain. Your story mirrors mine in so many aspects. I was told at one year by my OS that all was well, that a nasty pain down a shin was a tendon and would settle down, that being almost unable to engage my quads through pain in one leg would settle down, and that my expectations were high!

At 15 months, sick of the pain, disability, and lack of progress, was told by the head of orthopedics at the hospital (who I later discovered was involved in the surgery) that all was well with the surgery, I needed to break the cycle of overdoing it and inflammation, that I had let my quads atrophy, to do lots of weighted leg lifts and nothing else. Also, that I had high expectations! Er, hello, I had bilateral done, so why are my quads only atrophied on one leg?

Third opinion (same area, different surgeon) at 22 months, nothing wrong with implants, do more strengthening and learn to live with it.

Like you, I have been through self-doubt, anger, misery, and frustration, tried to force my bad knee to perform like the good (better) one, and was finally inspired by you and a couple of other people on this forum to get something done about it. Now I have answers, my surgery was not good, and it’s crystal clear where all the problems are.

I face decisions soon, and after your experience, feel in a much better place to make them. Thank you.
Oh yes, the aspiration of fluid was the same color, and my knee felt much better afterward, temporarily, so many parallels it’s unbelievable. I have avoided lengthy detailed posts on my thread so as not to bore or discourage people, but I am really glad that you have. So keep them coming!
 
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Kandy

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@Ghostpipe, I encourage you to push forward for answers and decisions that could help you get to a better place. It was hard when it seemed like my other opinions varied so much. I felt lost in the decision making, as if it I could just as well throw darts to choose the surgeon. Then, I broke down the details of each surgeon and found the similarities. My thing is that I wanted to do enough that whatever was prescribed would fix the problem, but I really did not want to be overly aggressive and do something that was unnecessary. Truth be told, I was also afraid about it not getting me to a better place. So, you are almost 2 years out and it has been a hard, hard two years. Recovery hasn't gone well. You've been told it is all fine. You've been left to believe that this is as good as it gets, and perhaps you just expect too much, or perhaps it isn't as bad as you proclaim. I personally think that is a form of gaslighting, making you to feel like your assessment and observations about your recovery are totally off the mark. Facing another surgery is a hard pill to swallow. And then, just how much surgery do you need to fix the problem? I eliminated the doc who wanted to try out a thicker spacer and have me come back 6 months later to remove the metal if the thicker spacer did not work. It was an attractive option, but the other two docs said they did not think a thicker spacer would work and told me why. What cemented my decision was the doc who said that during surgery when he could see better and take better measurements, he would objectively determine if a thicker insert would work for me and would do that as my revision, but he was prepared for (and expected to) taking out the metal and replacing it. So, he hoped for the best but prepared for the worst. The other thing that helped me was to seek out revision specialists, not simply surgeons who did primary TKRs. I think having an experienced surgeon who often went in to clean up not-so-great work from other surgeons was essential. I hope this helps you. Hugs!
 
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Kandy

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I have been absent for 3 weeks, but there is a reason. My 22-yr old daughter broke her left ankle and sprained her right one 3 weeks ago. The first two weeks were difficult because she was not able to tolerate weight on her sprained ankle and had to use a wheelchair. I found it utterly exhausting to help her transfer from wheelchair to shower chair and to push her wheelchair up an incline or across carpet. But late last week, she started walking some (they gave her a boot for the broken ankle and said she could put weight on it as tolerated).

Then, our son's wedding was Saturday, and our daughter was in the wedding. She was able to walk down the aisle and not use the wheelchair. Friday, Saturday, and Sunday were all very busy days. I was so busy that I hardly thought of my knee, except when it was really achy. I put 42,000 steps on my knee in those 3 days!! Furthermore, my goal was to dance the mother-son dance at the wedding, and it was absolutely perfect. It was a slow dance, so no jumping or complicated steps. I also entertained having 8 family members stay at our house. Lots of laundry, kitchen duty, etc...even going up the stairs 2-3 times (not yet alternating) to put clean sheets on the guest beds. I am so very glad that I was able to have the revision done in February, because I was able to dance yesterday at 10 weeks post-op. I am convinced that I would not have been able to dance without the revision at that time. The weekend was absolutely fantastic. My son married into an amazing family. I got to lay claim to a new, amazing daughter. All is right with the world. There was a little setback yesterday in PT, but nothing my therapist couldn't handle.

And the sleep demons? I have been so exhausted the past 4 nights that I did not succumb to them. I would call this a WIN!!!
 

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I would say that was a huge win!
 

EalingGran

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Amazing! There is no way I could have done so much so early. In fact that schedule would be fairly hectic for me at 6 months. Well done! But maybe take a rest??
 
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Kandy

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I had a slower weekend this weekend. I had PT yesterday and was frustrated. I am in the phase of strength training. It seems that the exercises that put weight through a flexed joint (like step ups) really irritate the knee and cause a stabbing pain. So, we went back to the basics. There is a bit of a rebel and anger at myself, that I just want to do it in pain, like I want to tell myself to Suck It Up Buttercup. But, my therapist said that isn't going to get me where I want to be. He is very mindful of my pain levels before, during, and after therapy. I think all the activity during the wedding weekend did irritate my knee a little, but I wanted it to bounce back by now. I am thankful for a therapist who is frank with me but also realizes that I need the extra reminder to be kind to myself. So, this week, I am not doing any step-ups, and I am going back to the basic exercises that I did 2 months ago.
 

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Sometimes we do have to step back and let the knee calm back down for a while, then we can go back to trying what irritated it so badly the first time. The slower time will be good for you and your knee.

Your PT is right on! It's obvious he has had up-to-date training on rehabbing a joint replacement.
 

EalingGran

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It seems that the exercises that put weight through a flexed joint (like step ups) really irritate the knee
That is exactly what annoys my knee too.
It is due to an overstretched MCL in my case and possibly yours as well.
My MCL got overstretched when my lateral knee collapsed with arthritis.
The exercises to strengthen it are for the medial quad- the vastus medialis.
It is a tricky little muscle to strengthen as it needs to be close to full extension to fire.
When you do a leg lift- turn the foot out and lower the leg gently.
I also find it is important not to let the knee turn inwards when putting weight on the bent knee. If I am getting up from a low chair I gently push my knee out with my hand.
 
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Kandy

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@sistersinhim, I do have a good therapist and appreciate that. He could read me like a book and gave me a high five the day I really needed it, to let me know that I was doing a good job, even though my knee was irritated.

@EalingGran , I will try that. I know that the MCL and LCL were both stretched, but not sure which one was worse.

I see my surgeon for a check up on Wednesday, but am concerned because the clicking/clunking or whatever name you give he noise seems to be worse than 6 weeks ago. I am not sure what is causing the noise, but it seems that my knee is more achey and in pain when the noise is more prevalent. It is prevalent when I walk in a quiet area, just as prevalent as the sole of the shoe hitting the ground, with a rhythm to it. Also, you can feel it when I do leg raises from a sitting position, if you put your hand on my knee while I do it. Six weeks ago, he said it was scar tissue and should get better, but he wanted me to work on PT for another 6 weeks and come back.
 

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Hi Kandy,
I hope your appointment went well today and your surgeon was able to offer you some reassurance in regard to the clicking / clunking noises you described. Thinking of you on this three month anniversary of your revision and hoping you had a nice day.
@Kandy
 
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Kandy

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@Layla My appointment went well, thank you! He thinks the clunking is from scar tissue and the knee cap. He told me that I didn't need to go to PT anymore, that the gold standard was biking daily, and that I would get to where I wanted to be. I don't have anymore follow up appointments, but my surgeon said don't hesitate to come back if I have questions and concerns.

But, I like therapy. I like trying to increase my muscle strength. I feel like the bike is more to keep ROM and kind of feels like it lubricates the knee and keeps it from getting stiff. My right quads have been so week. My therapist gives me personalized exercises on an APP to do every day. I log off on doing them. It does include 20 min of biking, but also has other exercises, like leg lifts and balancing. I am backing off to 1x a week for going to therapy. My therapist also does a massage on the knee and knee cap at the beginning and end of each session. Plus, I like having the accountability with the APP. And, I will say on more than one occasion, knowing that my therapist can see if I skip an evening of exercise has pushed me to do the exercises because I don't want to disappoint him. Part of me is like, yeah, I am going against what the surgeon said. But, part of me thinks that my surgeon doesn't understand that this therapist is different. He doesn't push me to do painful things. In fact, he makes me back off when I do want to push myself out of frustration. Therapy is in a corner section of a gym, where he has his table and cabinet. So, it is almost like having a personal trainer instead of a physical therapist.
 

EalingGran

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Glad you got reassurance about the clunking. It is great that you have a therapist that you like. I feel the same way about my pilates teacher. She definitely doesn't make me do anything painful but I feel it is important to really work on gradually strengthening the muscles of my legs. Looking back at my MRI scan reports there is moderate arthritis in both hips and my good knee, plus fairly severe lumbar arthritis and spinal stenosis. If I am going to avoid further surgery I need good muscles to protect my joints.
 

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Thanks for the update, Kandy! It sounds like you had a nice reassuring visit with your surgeon. I believe you’re the best judge of what you should or shouldn’t be doing given progress / pain. As long as you’re benefitting and not struggling with pain after prescribed movement or exercise, and your PT is not physically forcing any movement through manipulation, you’re on the right track! Your PT sounds like a gem.
Best wishes for the rest of the week! :)
@Kandy
 

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