TKR 15 months post-op. Still in pain.

Gigi2020

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I had total left knee replacement surgery February 21, 2019. Surgery went well. Six and one-half weeks of physical therapy went well. Reached 120 ROM at two weeks. By the end of PT, my ROM was 125 but the therapists could "push" me to 132-133. Straightening was at 2. I never made it to 0. Exercising, elevating, and icing at home. Did everything as instructed. Continued to do my exercises, elevating, and icing after therapy. My problem was (and still is) the tight "band" feeling that will not go away. I have had the feeling since the very beginning of therapy. Every time I mentioned it to my therapists, their reply was always the same..."wait a year". After one year, I was still in pain. This is not the kind of pain that any medication can control. I don't think it is nerve based pain. I've tried Hydrocodone, Oxycodone, Meloxicam (Mobic), Tylenol, Advil, Aleve, Ibuprophen, Naproxen Sodium, Turmeric, CBD oils, and essential oils over the past 15 months. My pain level is consistently a 5. On bad days it feels like I have a brick strapped to my knee. On worse days it feels like I have a concrete block strapped to my knee. There are no good days unfortunately.

I went back to my surgeon in March 2020 (13 months post-op) and complained of the tight band feeling. X-rays showed nothing out of place, no cysts, no tumors, no cancer, etc. and the surgeon couldn't believe I was still in so much pain. At first, he recommended revision surgery because he thought my body was rejecting my implant. When I broke down sobbing in his office, he then recommended more PT closer to home instead of surgery and suggested I postpone revision surgery another year. So I recently finished 4 weeks of PT going three days a week with new therapists. In the beginning of this round of PT, I was at 100 ROM and 10 on my straightening. After 4 weeks, my ROM was 112 and my straightening was down to 5. The new PTs also used a TENS unit on me. I am continuing to exercise there three days a week using the elliptical, recumbent bike, treadmill, and squat machine. I also purchased a TENS unit to use at home as well as a recumbent bike. But I still have the tight band feeling. One therapist suggested I may have excessive scar tissue build up. My surgeon said, "Give it another year." This has affected every aspect of my life: working, standing, sitting, walking , sleeping, driving, housework, etc. It has affected me physically, financially, emotionally, and socially. I am at my wit's end. I wish I never had the surgery.
 

Roy Gardiner

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First, :welome: to BoneSmart.

Healing and training are different. https://bonesmart.org/forum/threads/post-operative-exercise-–-the-bonesmart-view.25463/

It is very possible that you have been overdoing training, doing too much work, and stressing your soft tissues. Exercise in the form of training will not reduce tightness or pain. In my opinion (and you may take it as not worth so much, I'm not a doctor or physiotherapist) you need relaxation, massage maybe, and gentle pain free stretching exercises (which are not training!)

Here are some ROM and extension stretches (there are loads, these are just examples) https://bonesmart.org/forum/threads/rom-and-extension-stretches.13159/

It's here in our guidelines:
Knee Recovery: The Guidelines

1. Don’t worry: Your body will heal all by itself. Relax, let it, don't try and hurry it, don’t worry about any symptoms now, they are almost certainly temporary

2. Control discomfort:
rest
ice
take your pain meds by prescription schedule (not when pain starts!)​

3. Do what you want to do BUT
a. If it hurts, don't do it and don't allow anyone - especially a physical therapist - to do it to you​
b. If your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again.​

4. PT or exercise can be useful BUT take note of these

5. At week 4 and after you should follow this

6. Access these pages on the website

The Recovery articles:

There are also some cautionary articles here


We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery.

While members may create as many threads as they like in a majority of BoneSmart's forums, we ask that each member have only one recovery thread. This policy makes it easier to go back and review history before providing advice.
 

Jockette

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It is very possible that you have been overdoing training, doing too much work, and stressing your soft tissues. Exercise in the form of training will not reduce tightness or pain. In my opinion (and you may take it as not worth so much, I'm not a doctor or physiotherapist) you need relaxation, massage maybe, and gentle pain free stretching exercises (which are not training!)
Gigi2020, as I read your post I was thinking the same thing that Roy said. For some of us, continuing to do formal exercises backfires and keeps our knee upset, rather than strengthening it as we hope.

I also suggest stop doing the formal PT type things, and just live your life and use your knee, doing your normal daily activities. When you can, rest with your leg elevated, and see if this gentle treatment can help your leg settle down.

If/when you see improvement, gradually add in some more activity, if you want, and see how that goes.

It seems so many of us are led to believe that we must work hard at this recovery, and that does work for some, but some of us just have to give our knee very gentle treatment and give it time to heal.

I had a partial, and my leg felt awful the whole first year, even though I didn’t over exercise it. But, now I’m in my third year post op and I’m amazed at how it has improved, without a lot of work!
 

Pumpkin

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@Gigi2020
I agree with the excellent advice that Roy and Jockette have left for you.
Continue using your TENs unit if it helps, and give your knee a rest so it can heal.

You may want to consider obtaining a second opinion for your TKR, from a surgeon specializing in revisions, they have the education and background to determine what is happening with troubled knees. Look for a surgeon specializing in complex joint reconstruction or revisions. They should have no relationship with your present OS, not even golf buddies.
 
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Gigi2020

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I wanted to reach out again (3 years later) and say that I’ve found a surgeon who is hopefully going to help me after four years post op of continuous pain and suffering from TLKR. I’ve had one X-ray under him currently and have an appointment today for a CT scan and lab work to check for infection and/or inflammation/inflammatory markers. My quality of life has suffered the past four years to the point that I’m at my wit’s end. My prayers are that he finds the source of the excruciating pain and restores my quality of life. This experience has been a nightmare.
 

Layla

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I am sorry you've been struggling for so long. It's very sad.
Prayers for a diagnosis and plan to restore your life. :prayer:
Please stay in touch with updates. We do care.
@Gigi2020
 

MurrayB

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I am in the same situation, going on 5 years now. I had my 1st RTKR in July 2018, then a revisionTKR in June 2021 and here I am with the same or more pain, loss of ROM, night pain, etc. etc. I too wish I had never had this done. Doctors don't want to do my L knee for fear of the same happening there. I am 79 in Canada. I was always very active-walking, golf, gardening, etc. Now limited walking, no golf, no gardening.soreness, stiffness, etc. A flip of the coin I guess.
 
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Gigi2020

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I feel your pain… literally and figuratively. I hope that my new surgeon can help restore my quality of life. I hope you can find answers as well.
 

Ayse

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I wanted to reach out again (3 years later) and say that I’ve found a surgeon who is hopefully going to help me after four years post op of continuous pain and suffering from TLKR. I’ve had one X-ray under him currently and have an appointment today for a CT scan and lab work to check for infection and/or inflammation/inflammatory markers. My quality of life has suffered the past four years to the point that I’m at my wit’s end. My prayers are that he finds the source of the excruciating pain and restores my quality of life. This experience has been a nightmare.
I'm so sorry you're going through this. My heart goes out to you and know how you feel as I'vebeen in a similar hell for 18 months that has affected every aspect of my life. The debilitating disability and constant severe pain is so draining and depressing. I really hope you find some answers and solutions soon.
 

WFD

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My quality of life has suffered the past four years to the point that I’m at my wit’s end. My prayers are that he finds the source of the excruciating pain and restores my quality of life. This experience has been a nightmare.
Same here - it will be three years this Fall.

Interesting how many of us there are.
 
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Gigi2020

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UPDATE: Left knee revision surgery is scheduled for June 28. I am relieved yet terrified, hopeful yet scared, optimistic yet concerned. Original implant was apparently installed incorrectly. Although my new OS didn’t actually say those words, I think that’s what he meant. Prayers that the second time around will get my quality of life back!
 

bland9

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My OH and I understand so much about pain and life being limited due to knee not responding to how we had hoped- if you look at my OH post you an see how it has impacted so badly on his and my life-
 
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Gigi2020

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@bland9 I’m so sorry to read what you and your OH have gone through and are continuing to go through. My new OS is a revision specialist. He stated that he does 10-15 revision surgeries a month. I feel that he will do everything in his power to give me back my quality of life.

Keep searching for a new OS. One who is a revision specialist. We all deserve better. Thank you for sharing your story. Take care.
 
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Gigi2020

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@bland9 And I too have had X-rays on my hips. They still look normal, thankfully. My guess is that because I continue to walk with such difficulty, it may have an impacted my hips.
 

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