Revision TKR ArthroFibrosis anyone?

[Jamie]

If you haven't tried the Hospital for Special Surgery (HSS) in New York City, you might investigate them. They have a special team of surgeons who, for a flat fee, do an analysis of your situation via telehealth and might hopefully offer some options.

New York City
Hospital for Special Surgery (HSS)

Stavros Niarchos Foundation Complex Joint Reconstruction Center is a special program created with a $10M grant that deals with diagnosing and treating the most challenging knee and hip replacement problems. As part of the diagnosis, a committee of surgeons meets to discuss your case. There is a $500 fee for your case review. This center is headed up by Dr.Thomas Sculco.

 

[MurrayB]

Hello! Had my original TKR in July 2018, followed by 2 Arthroscopic MUA's. Then in 2021(June) was referred to new Surgeon who did a revision TKR. Over a year later and still having pain, swelling, reduced ROM, knee clicking, stiffness, etc. I'm told it could be my genetics producing copious amount of scar tissue. Or maybe it's Arthrofibrosis? Or something else. Have had every test done to no avail. Thinking about going to Germany to see a Doctor there. He's part of ONZ. Does anyone know of a specialist who can investigate knee problems post-TKR?

 

[Jaycey]

@MurrayB I merged your latest thread to your original recovery thread. I wonder if you had seen the recommendation Jamie left for you in March? HSS is tops for problem joint replacements (see post above).

 

[ski_bum]

@Jockette
Are you bothered by weather change?

 

[Jockette]

Yes, weather does bother me at times, but surprisingly, after the weather event, not before, like most people.

 

[ski_bum]

I don't need a cane but sometimes I feel I should. What I meant about the surgery was a success etc. is that everything looks good, X-Ray, Ultra Sound, Bone Scans,Etc. BUT I am more limited now than before the surgery thus I didn't get the results I was hoping for. I was bone on bone on the R. side where I had the surgery. I also have bone on bone on my Left side but I will not put myself through the pain and reduced ROM, etc. to be in pain again. With no intelligent explanation why my R. knee is problematic I refuse to put myself into that situation again.

I had many thoughts of not doing my second knee, but was talked into it. I am now 14 months with pain, little sleep, more drugs than 20 years before first surgery. Wish you luck.

 

[Jockette]

MurrayB,
If you have an allergy there are two labs that will test for metal allergies.
You will have to send a blood sample to the labs. Regardless of were you live, you will have to pay for the testing. If you are allergic, see a surgeon specializing in complex joint replacement or revisions.

This lab is Colorado Springs does tests for many allergens and allergic reactions.
https://www.ccrlab.com/contact.html

This lab in Chicago has more of a metal allergy focus.
https://www.orthopedicanalysis.com/metal-sensitivity

Have you had this test done to check for an allergy to your implant?

 

[BillinPA]

Hello! Had my original TKR in July 2018, followed by 2 Arthroscopic MUA's. Then in 2021(June) was referred to new Surgeon who did a revision TKR. Over a year later and still having pain, swelling, reduced ROM, knee clicking, stiffness, etc. I'm told it could be my genetics producing copious amount of scar tissue. Or maybe it's Arthrofibrosis? Or something else. Have had every test done to no avail. Thinking about going to Germany to see a Doctor there. He's part of ONZ. Does anyone know of a specialist who can investigate knee problems post-TKR?

I share much of your experience and frustration. I had my original TKR in Oct 2019 and it was never 'right'. It was always tight and sore upon walking although it had good ROM. After a year my surgeon started testing for an infection which dragged out for seven months due to inconsistent test results and the COVID pandemic. Finally he concluded I had a low grade infection and recommended a single stage revision. I then decided to get a second opinion from a doctor at the Rothman Institute who specializes in revisions, doing a couple hundred a year. I felt I was in good hands. I completed the first stage of a two-stage revision Jul 12, 2021, and the second stage Aug 30. I had my annual checkup last week. I told my surgeon that his knee feels pretty much like the one he removed - with the added problem of a severe clicking/popping with every step which discourages walking. He repeated what he told me in April - I have good ROM, very little swelling, the x-ray looks good, the joint was tight, the popping was just the metal interacting with the spacer, and the warmth (4 deg warmer than my other knee) was to be expected. He said he didn't think the knee was infected but he aspirated it and sent it for testing as a precaution. I've waited with bated breath for the results which I received today - the tests were negative, no infection. I was greatly relieved, as I was dreading another surgery, but the mystery remains why the knee continues to be sore and dysfunctional. I checked out one of the metal sensitivity testing companies mentioned above, and I need to think more about whether I want to spend the $600 for testing at this time. But should a revision become necessary in the future I will be sure to have the testing done before proceeding.

Good luck in your search for answers and a solution.

 

[MurrayB]

I had a RTKR in 2018, followed by 2 MUA's within a year to remove scar tissue. Then in 2021 had a revision(complete removal & replacement) and now my pain. stiffness, pain, loss of ROM is greater than before. I've seen 6 Surgeons (4 in Can. 2 in U.S.) who say they don't know what to do. X-rays are normal but there is something wrong! I suspect it's Scar tissue formation however I'm told if it is removed it will just come back again. Do any Ortho. doctors read this forum? I hope so. As I write this my R knee is throbbing, and kept me awake for hours(2 years post-op). Now the worst: my L knee needs a TKR & Doctors are reluctant to do it because of my existing condition on the R side. Talk about being caught between a rock and a hard place.

 

[WFD]

Hi @MurrayB , I don’t have any solutions but as someone in a similar position, I can sympathize, for whatever that is worth.

 

[Jockette]

I’m so sorry you are still in so much pain. My PKR never came out right and no one knows what to do with it, either.


By the way, I merged your newest thread with your original recovery thread, as we prefer that members in recovery have only one thread.

This benefits you because all your information is in one place, easy to find, and maintains a nice journal for you.

This also benefits our staff, as your information is all in one place, and we often go back through your thread for previous details, so we know what you‘ve been through which helps us advise you better.

So, please keep all your posts in this thread. If you’d like a new title, let us know what you want, and we’ll change it for you.

Many members bookmark their thread in their computer browser, so they can find it when they log on.
How can I find my threads and posts?

Best wishes on your continuing recovery!

 

[sistersinhim]

It sounds to me like your knee has never had a chance to heal completely. Each time you had a MUA, it traumatized your knee and set back your recovery. Then you had the revision. Did you have aggressive PT? We have found that for the majority of joint replacement patients who have gentle, not forced movements do much better than the others who have the aggressive PT and exercises.

 

[Layla]

I've seen 6 Surgeons (4 in Can. 2 in U.S.) who say they don't know what to do. X-rays are normal but there is something wrong!

I am sorry you are struggling as you are. I am wondering if these surgeons are revision specialists?

Now the worst: my L knee needs a TKR & Doctors are reluctant to do it because of my existing condition on the R side.

This has to be frustrating for you. Another reason to try again...if you have it in you. I wish you luck. Stay in touch!

 

[MurrayB]

I know I have posted this before but I feel I need to express what I feel is the source of a common problem(s)-pain, stiffness, post TKR. I had my R TKR in 2018, followed by 2 Arthroscopic surgeries for scar tissue removal and MUA. The process started over again leading to a Revision in 2021 and since then the pain has worsened as has the stiffness leading me to believe that the problem is SCAR tissue, again! It doesn't show up on an X-ray. The only way I know of is to insert a camera and have a look. Here where I am (Toronto, Canada) no doctors want to do that. There is no definitive method to reduce or break-up scar tissue. There are many 'suggestions' but not one offers any proof. This is why I have lost some faith in the medical community.

 

[sistersinhim]

Hello @MurrayB,
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• That way, you have all your information in one place. This makes it easier for others to go back and review your history before providing advice.
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I hate to read that you are having the same problem you did before. Have you tried to rest the knee more and to not try to force it? Maybe it's staying inflamed. I'd say it's worth a try.

 

[MurrayB]

I had my 1st TKR in 2018 followed by 2 Arthroscopic surgeries approx. 12 months apart to remove scar tissue. Pain & reduced ROM continued. Referred to 2nd Ortho. Surgeon who performed 2nd TKR(same knee) in 2021. Same results, pain, reduced ROM still ongoing now. So far have seen 6 Ortho. Surgeons. No conclusive plan to treat my symptoms. I fit the description(definition) for ArthroFibrosis which could be a condition for life. L knee is problematic but I have opted to try PRP (Platelet Rich Plasma) to help reduce the discomfort and to avoid the same problem as exists with my R. knee. My Ortho. Surg. agrees. Here's hoping for a good result.

 

[Layla]

Hello Murray,
I am sorry for all that you have struggled with. Please let us know how the treatment works for you.
Wishing you success and all the best!
@MurrayB

 

[WFD]

L knee is problematic but I have opted to try PRP (Platelet Rich Plasma) to help reduce the discomfort and to avoid the same problem as exists with my R. knee.

Please let us know how the PRP treatment works out. Thanks.

 

[MurrayB]

I have had 2 PRP Injections on my L. knee but they did nothing for my knee pain. I consulted with another(#7) Ortho. Surgeon who looked at my X-Ray & said I was too far along to have any effect from PRP. My L. knee is at 'End-stage' Arthritis. And I have the pain to go with it. So now I need a TKR(or TKA) asap. Considering going to Germany or Mexico. Would appreciate hearing comments.