Revision TKR Kandy's Journey

[Jockette]

My concern is that it could be a sensitivity to metals, a deep infection, a loosening to the implant, or scar tissue.

Bloodwork should be done to rule out infection.

You could also request a metal allergy test. Not saying that's what it is. But the test would rule an allergic reaction out.

For anyone who would like to get a full metal allergy test prior to any joint replacement surgery, you can get the test done in the USA by ordering the test kit from https://www.orthopedicanalysis.com/testing/order-testing-panel . You want the Orthopedic Panel Test 2. Once you get the test kit, your GP (or any lab) can do the blood draw and send it in for testing. You will have to have a doctor's order for the lab to run it. Most, if not all, insurances won’t cover it, but somethings are worth paying for.

 

[Kandy]

Thank you Jockette! I will ask my doc about the metal allergy testing. As for blood work, only two things were out of the ordinary (CRP and RF). My CRP was slightly elevated (but not concerning), with ESR and WBC being normal. My RF factor was 116 (normal is 0 to 14). It was repeated at a different lab two weeks later and was 156. I have an AI called Sjogren's Syndrome, diagnosed in 2014. It has been in remission for 2-3 years. I have referral back to rheumatology (appt in Dec). An elevated RF doesn't always mean rheumatoid arthritis (RA). It is a measurement of proteins that your body emits when it launches an immune response, but is traditionally associated with RA. With no symptoms and a negative CCP test, it is unlikely to be RA. 20% of the time, an elevated RF is due to other reasons. These other reasons include a flare of Sjogren's (but neg blood tests and no symptoms would tend to not support this as the cause), having mononucleosis, having tuberculosis, having hepatitis, or having some other deep infection. All I know is that my body is launching a very heavy immune response, though I do not know why. So, there are no clear answers here, just a bunch of disjointed puzzle pieces. My pain and irritated knee could be an undiagnosed infection, or perhaps related to the piece of bone cement floating around the lateral side of my knee, or scar tissue, or a sensitivity to the metal or bone cement, or the recalled PE insert wearing out early (though I really don't think this is the case), or that I am just inpatient in waiting for my knee to heal itself, and/or today's diagnosis of laxity in the ACL. All I know is that I had a major setback with over-using it some 12 weeks ago, and there has been no change with resting my knee and using the cane during that time. Maybe with the metal testing, I can get that kicked off the list of potential reasons why my knee is hurting as much post-op as it did pre-op.

 

[Jamie]

@Kandy .... I have one surgeon on my list who is near you. He was recommended by our BoneSmart CEO for another member, so it might be worthwhile to have a consult with him since he's close to you.

Please let me know how things go if you do decide to see him.

Temple
Dr. Kirby Hitt
Head, Adult Reconstruction and Joint Replacement
Baylor Scott & White Roney Bone and Joint Institute - Temple
2401 S 31st St
Temple, TX 76508
Phone, 254-724-2663

I have some names in the Dallas area, but thought you should try Dr. Hitt first, since Mark knows him personally. Be sure and tell him you got the referral from BoneSmart.

 

[Kandy]

Thank you Jamie for your recommendation. I know of Dr. Hitt, as he is considered the area's expert knee surgeon for TKRs. My surgeon worked alongside of Dr. Hitt for at least a decade until moving last September to a new practice. Ironically, my OS moved because the large teaching hospital that they were a part of would only let them do day surgeries (and no TKRs) due to covid and staff shortages. My surgeon offered to refer me to another colleague there (but not Dr. Hitt because I am too young) so I could just wait it out until surgeries resumed, but I elected to follow my OS to his new location. I just called Dr. Hitt's office and because of my age, I will have to see a different OS for a 2nd opinion. For me to see Dr. Hitt, that new OS will have to decide that my case is too complex and warrants a referral to Dr. Hitt. There are too many hoops to jump through and no guarantee that I could even get on Dr. Hitt's schedule. So, please do send me some options in the Dallas/Fort Worth area. Thanks!

Just added this update: Called Dr. Hitt's office today and he won't see me because of my age (too young). I would have to see a colleague at the clinic. So, names for an OS Revision specialist in Dallas/ Fort Worth is appreciated.

 

[Kandy]

I just wanted to give an update. It has essentially been a year since my TKR, though I know several of you say that the clock restarts at your MUA. Three weeks ago, I saw a revision specialist in the Dallas area. Upon examination, he said that my knee was abnormally loose. He did not know if this meant it was not balanced, or if the implant was loose inside the bone. He said all of the popping and clicking was abnormal. He also said that the giving way that I have been experiencing was instability, not a weak quad muscle. He withdrew fluid off of my knee joint and sent it out for testing (it was negative for infection). The fluid was the color of a dark beer and not the pale yellow it was supposed to be. He said that there was definite irritation and inflammation in the joint. He gave me a steroid shot, and then also prescribed a different NSAID and a steroid dose pack. He said that the looseness was irritating the joint. He said if the steroid can calm down the inflammation, then we can buy a little time before a revision. But, he said that it would have to be significantly better in 2 weeks. Otherwise, a revision is in my very near future. He scheduled me to come back in January to discuss the plan (assuming that I had great improvement with the steroid), but said to come in sooner if I did not see significant improvement in 2 weeks.

For the week after the injection, my knee felt better (except a little sore), but I think it was because the excess fluid was removed. Within a week, it was hurting as much as it has been. In fact, the crunching seems to be worse as it now occurs when I go from sitting to standing or standing to sitting. And, there is always pain with the crunching noise. I need to call the revision doc to let him know that I did not get lasting relief. Next week, I have a follow up with my OS and I also have a 2nd opinion scheduled with a revision surgeon who is located a little closer to me. I will report back with what both docs tell me.

The revision doc was very kind. He shook his head when he asked me what my OS said (which OS diagnosed it as overuse at end of July and kept telling me to wait it out longer). The revision doc said that overuse generally gets better in 24 to 48 hours, and most certainly within a week. He also kept telling me that it wasn't supposed to be like this a year out, validating what I knew in my heart to be true. From that perspective, it was nice to hear that it wasn't all in my head and that I did not do anything wrong to effect the undesirable outcome I have had.

 

[Jaycey]

@Kandy Sounds like you made some real progress! So glad you are finally getting some answers. Please keep us updated!

 

[sistersinhim]

It's good that you finally have an answer.

 

[Kandy]

Sorry for the long post. I am so confused. I am not a cryer, but I broke down and cried like a baby yesterday. I had two appointments yesterday. The first one was with the original surgeon who did the TKR. Second appointment was with a 3rd surgeon, for another 2nd opinion, who does revisions as well as original TKRs.

Original surgeon: Said everything looked great, said he disagreed with my 2nd opinion and he believes that the knee joint is not loose or imbalanced, but just as it should be. He said just maybe that little piece of cement floating in outside of joint might be the culprit and next step is to do a scope and remove it. He then said that there is a small subset of people who do not get better with a TKR and I might be in that category, but to try the scope first before giving up and accepting my lot in life.

Third surgeon: Looked at MRI prior to surgery and said he never would have done TKR in the first place (though I was in a lot of pain and it kept me from going upstairs at my house). Then he said that a revision is the last stop and that I would have to be okay with whatever happened in revision because you cannot have a revision to a revision. He said he would remove the metal and the plastic and start over. Since I am sensitive to zinc earings (and apparently the prosthesis has zinc in it), he would put a different material in but would not do a metal allergy test because the results are often inconclusive and have no bearing on whether or not a person has a metal reaction to their new knee. Doesn't think it could be a metal reaction. He said the knee was looser than he likes to see, but lots of people walk around with a knee as loose as mine and it doesn't cause problems. Doesn't think the bone cement or calcification is the problem. Doesn't think the recall is the problem. Says I will probably get better, but not as good as I want to be. He said maybe I could learn to live with it on bad days knowing that good days are just around the corner. Said that now at a year out, probably won't see any more improvement. He wants me to take the holidays to think about it, come back in January and bring my spouse (I was alone), and then discuss whether or not to schedule a revision, which is scheduling 3 months out. So, looking at April or May revision if I move forward with it with him. He wanted me to try a brace and said that if brace gives relief, then probably is instability. I just got back from a trip where I wore the brace when I had to walk a lot, like through the airport and brace helped. Thought it was because brace kept my knee straight and my pain is mostly when I bend the knee and put weight on it while bent (like walking or going up and down stairs). Also said that it is common to have bloody effusion with instability (and I had bloody effusion).

I wanted answers yesterday. I wanted one doc to agree with another. In some ways, I got that because both 2nd opinions thought my knee was loose when my original surgeon said there was nothing wrong with it. But here's the thing. It is getting worse. I do not have good days and bad days. I have progressively worsening days where the longer we wait, the more I have instances of the knee giving way, and the more painful crunching I have. I got a little relief when the doc drained my knee, but that lasted about a week. Doc #2 (that I saw on 11/1) said that he would try to just replace plastic insert with thicker one if he could to tighten things up. Doc #3 said that usually doesn't work because knee is rarely loose the same amount through the joint, and that it could be the tilt of the tibia plateau. If I were 20 years older, I would be willing to accept this new normal. I am only 54 and cannot imagine a life with all the limits I have right now. My new knee has crossed the threshold where it is now more painful than the original knee. I avoid stairs, which means I avoid half of my own house. I walk with a hiking stick (because I have a big mental issue with going back to the cane). There are so many things that I did before 2021 that I cannot do anymore because of this damn knee. I am a fighter. I cannot just raise the white flag and accept this new place in life. Before I do accept this new normal, I need to know that I did everything I could to affect a different outcome.

At this point, I need to process the three different opinions. Behind door #1 is my original surgeon who just wants to do a scope and take out the extra bone cement fragment. Behind door #2 is a revision surgeon who said the knee is most definitely unbalanced, wants to try just replacing plastic, wants me to do a metal allergy test (in which results might change his plan), and will schedule a revision in January if that is the route I want to go. Behind door #3 is a hip and knee surgeon who also does some revisions who wants me to try to live with the pain or at least wait 4-5 months for a full revision. I do not want to undergo more surgery. So, I would generally go with least invasive, which is my original surgeon who recommends a scope to take out the cement fragment, except the other two docs said that would not help (and my own surgeon said in September that he did not think that would help). It's like my own surgeon is just slinging mud at the wall to see what sticks. I had prayed for clarity after the appointments, but feel like I was thrown into a dark fog and left by myself to find the way out. I welcome any advice and/or encouragement.

 

[Layla]

There are so many things that I did before 2021 that I cannot do anymore because of this damn knee. I am a fighter. I cannot just raise the white flag and accept this new place in life. Before I do accept this new normal, I need to know that I did everything I could to affect a different outcome.

This is heartbreaking. I am so sorry. I pray you are led to a surgeon who will help you achieve the desired out come with perfect healing. I wish you comfort, peace of mind and clarity in your decision making. Please know we're here for support always.

 

[InkedMarie]

I’m so sorry things ended up this way. I’ll be interested too read of your decision. What does your spouse say?

Marie

 

[Creampuff]

I am so sorry to hear this. Perhaps as you think it over there will be more clarity. This is most definitely a confusing and difficult situation.

 

[Flashlight]

You are in a difficult position. It sounds like 1 & 2 really are not sure anything will work and whatever they do it will take some time to heal and what if it doesn't work. #3 seems to have more of plan. I'm wondering if one of these doctors would consider an MRI. I'm sorry this is happening to you. I hope bringing your husband to the appointment will help. Does your knee hurt because the fluid has built up again? Did they share why this is happening? Did they rule out infection? Right now, it seems like you don't have enough information to make a decision. I know it is the unknown no matter how brave we are that is scary.

 

[Jamie]

If your knee is loosely balanced and that movement is causing the irritation, it is possible that a slightly larger spacer might help. If the implant is actually loose, that should be evident with an x-ray. If this is the problem, the only resolution is a revision.

I realize you are frustrated and prefer not to have any more surgery. But surely if you and one of the revision doctors you’ve seen felt a particular procedure might help you, you’d consider having it. It’s pretty certain that doing nothing isn’t going to allow things to improve. It’s never possible with joint replacements to have any guarantees for success, but the odds would certainly be in your favor with an excellent revision surgeon once he gets inside your knee to really see what’s going on. Imaging is helpful, but it often doesn’t tell the whole story.

My personal feeling is that you’ll be better off with one of the two revision surgeons you’ve seen recently. Your original surgeon appears to be blowing off your continued (and increasing) pain and disability. This is not good. Please try not to be disheartened. If you need to, make additional appointments with the two latest surgeons you’ve seen and take your husband along. Have questions prepared to ask each of them and perhaps this will help you decide which of them you feel will be the best for you.

Don’t hesitate to come here and talk also. Sometimes just putting fears and concerns down on (virtual) paper helps calm nerves and allows you to see the best path forward. We’re here for you!

 

[Kandy]

Thank you for the all of the encouragement and warm advice. My husband thinks things are worse now than 6-8 weeks ago. He thinks the sooner I have some sort of surgical revision, the sooner I can get on with healing and to a better place. I just got back from my PT, which I haven't seen in 5 weeks. I wanted his input because he has been my therapist for a year now, since before the TKR. He immediately said that the side to side is much looser than he thought it was last time I saw him. The swelling is definitely down. Whereas my original surgeon kept saying there wasn't any effusion, my PT said that there was, but that appears to be better now (since the revision doc took excess fluid out 5 weeks ago).

Before my PT appt, I had come to the realization that I have to try something, and just "do it afraid" if that's what needs to happen. I was leaning toward the oldest revision doc, because he was going to try just a thicker insert, but said he might get in there and have to take out the metal. He only does revision knees and hips. He ordered the metals allergy test. It seems like he is paying more attention to the details. When he took the fluid out, gave me a steroid shot, gave me a steroid med pack, and prescribed a heavy duty NSAID, he said he hoped that those things would significantly help and buy some time. But he said IF THEY DIDN'T significantly improve the pain in 2 weeks, that we would proceed with the revision.

It is clear to me now that just waiting for posterity's sake will not improve my lot. I was wondering if I was just being a wuss and crybaby about the pain. But the oldest revision doc told me "It's not supposed to be like this 1 year out". Today, my PT made me feel better when he said I wasn't a wuss, that my pain was real, and that he watched me as it increased over the past few months. He liked that the other revision doc was cautious, but did not like the all or nothing aggressive approach (which was what I struggled with as well).

My PT asked me if I was okay with a surgeon not exactly knowing what he was going to do until he got into my knee. Interesting question. I would much rather have a surgeon plan on the minimum and prepare for the maximum but not really know what will be required until he got in there and saw what he had to work with than a surgeon who planned to take everything out and start over. So, that is my decision is to go with the oldest (and first) revision surgeon that I saw a few weeks ago.

Like many of us, I beat myself up with the "what if's" or "should have's". I struggle to accept that sometimes things happen. Because if I can identify something I did wrong, then I can change that for next time and hopefully change the outcome. But also with placing blame on myself, there comes the guilt. Both the older revision doc and my PT today made me feel better when they said I did not do anything wrong in the recovery process. I did my part and this still happened. I needed to hear that, especially today.

In the mean time, I have two other important appointments coming up. First one is tomorrow to meet with an electrophysiologist doc that my cardiologist referred me to. In October, I wore a heart monitor for 10 days. My cardiologist said it showed I was in Afib for 23% of the time, and I felt it as I logged the episodes fairly accurately. The referral is to get a heart ablation done. My older two brothers were my age when they had it done, and it helped them. I am not worried or nervous about it. It's just that it is one more thing when I did not want to have one more thing.

The second appointment is with a rheumatologist next week. My RF factor was 114 and then 156 two weeks later, when normal is 0-14. I have primary Sjogrens as an autoimmune disease, diagnosed 8 years ago. But, it has been in revision and my rheumatologist retired last December so I did not bother finding another doc (until September when the test results came in). An extremely elevated RF factor doesn't ALWAYS indicate rheumatoid arthritis. So, I will be interested to ask the doc if it has any connection to what is going on in my knee. Again, one more thing.

To keep my spirits up, I am going to start focusing on the blessings in my life and not on the things written about above. I will choose joy. I will choose to overcome my fear over another surgery.

 

[benne68]

To keep my spirits up, I am going to start focusing on the blessings in my life and not on the things written about above. I will choose joy.

Oh @Kandy! What an amazing attitude you have. With all that you have been through -- and continue to deal with -- you are an inspiration to me. I'm going to follow your lead and choose joy, especially now in this holiday season, and count my blessings too.

Thank you for your post!

 

[Jamie]

You've got this, @Kandy. It's obvious you've spent time thinking through not only the facts, but also your emotions and feelings about the whole situation. That's the first big step on the way to success and I believe your new approach will get you there. Hang in there. Sometimes the path to the prize is a winding one, but you can get there! We'll be right here to cheer you on.

 

[Flashlight]

It's very hard to find a rheumatologist. My daughter has RA and finally found a doctor she really likes. My SIL has Sjogrens. The best of luck to you.

 

[Kandy]

Hello all! I kind of am in a holding pattern. I saw the rheumatologist and really liked her. She said my knee and elevated RF might be related, or they might not be, but that she was committed to finding that out. She ordered quite a few blood tests and was glad to hear that I was going to have a metals allergy test. I am waiting for those test results to come in. Getting the allergy test done was quite an ordeal, mostly with lost referrals and wanting me to drive to the office 3 days in a row when the drive is 2.5 hours each way. I found out about the LTT allergy test (blood test) and was able to get my blood drawn locally. I am also waiting on those results to come in. I am hoping that these results will provide clarity and help me decide what the path forward should look like. In the mean time, I am enjoying that my college kids are home and our house holds the sound of laughter with the fragrance of delicious food.

 

[sistersinhim]

Enjoy your children being home, the laughter, and the good food!

Have a very Merry Christmas!

 

[Jamie]

Waiting like this can be the worst part of your journey to finding out what's going on. At least you'll be able to enjoy your kids being home and the great holiday food. Don't hesitate to come here and post if you're feeling frustrated with the wait. I hope you get some feedback soon.