Revision TKR Kandy's Journey

[Kandy]

Thank you Jamie and Sistersinhim. I got my test results back today, but not sure what they mean, in terms of practicality. It looks like effective June 28, 2022, Orthopedic Analysis changed their reports. The bottom and top tiers are still the same, meaning that 0 -2.0 was and still is "Unreactive" while >8.0 was and still is "Highly Reactive". It used to be that 2.0 - 4.0 was "Mildly Reactive" and 4.0 - 8.0 was "Moderately Reactive". However, now, 2.0 - 4.0 is considered "Equivocal" and 4.0 - 8.0 just means "Reactive". Equivocal means ambiguous or uncertain. So, maybe the Bone Cement being 2.2 really doesn't mean anything? Maybe the Nickel being 4.1 means it is just barely reactive? I have a call into 2nd Opinion Doc 1 to ask if this changes anything. If it is barely reactive, would he try to take the whole thing out? Or would he still just try to swap out the plastic insert with a thicker piece for the instability? My appointment is in 3 weeks to see him. I already know 2nd Opinion Doc 2 was planning on taking the whole thing out and replacing with the hypo-allergenic knee (because of affirmative answer on questionnaire about reactions to zinc jewelry). 2nd Opinion Doc 2 did not think it was necessary to get allergy testing because he was going to go with hypo-allergenic components anyway.

I go back to rheumatologist next week to go over bloodwork. It looked like my bloodwork was mostly good, except for inflammatory markers. I can tell that my knee seems much more swollen right now, especially with the joint fluid. So, I plan to ask her to drain it and possibly send that off for a full analysis. Back in November, the orthopod only sent it off for a culture, not for a full analysis. My pain level is up a notch or two, but I think that might be related to activity (cooking more, wrapping presents, etc).

I have to be honest that this can really get me down if I let it. It has been 5 years since I had a Christmas without issues or recovery between my spine surgeries and knee surgery. It seems totally unfair that I started having knee issues during my active recovery on my spine. And it seems equally unfair that I poured everything into recovery and here I am a year later, in worse shape than before my TKR. There are times when I just want to curl up into a ball and cry. That is when I try to not dwell in the land of the unfair and work on what I can do. I can choose joy. I don't have to give it up. I can find things to be thankful for instead of focusing on the things that are not going my way. But, it is a difficult battle of my emotions, wanting to have that pity party and just be frozen in despair. But if I choose that way, it robs me of the things that can still bring me joy right now. It is safe here, to talk about that elephant in the room, that despair that is lingering like a dark cloud, hovering and waiting to descend upon a vulnerable moment. But then, I have to remind myself that I am strong, I am brave, I am resilient, and I am truly blessed. You are too! Merry Christmas, my friends, and may you each find something joyful to celebrate in your life, no matter where you are in recovery.

 

[sistersinhim]

I love your attitude! It seems when we're depressed and negative it just makes us feel worse. Having a positive attitude helps so much. When I get on my pity pot, I try to remember how much worse off many people are than I am. I'll watch some funny animal videos or a good old-fashioned family movie. Even singing helps many people lift themselves out of the dumps.

I know nothing about your numbers. I'll send it to staff so our medical people can look at it. Of course, it'll just be a guess on their part, and no substitute for your own medical staff.

 

[Jockette]

I understand the mental and emotional battle. My partial was almost 6 years ago. It was not a good outcome. But like you, and @sistersinhim, I choose to accept that things could always be worse. I’m thankful that I can handle living independently. I’m thankful that I am managing as well as I am.

I hope you find the answers you need for an eventual successful outcome.

 

[Layla]

Hello Kandy,
Your attitude is admirable and your example of grace while under fire inspiring. I am sorry you haven't had a Christmas in over five years without health issues or a recovery from surgery. It's wonderful you have a fighting spirit, you're not willing to concede, or wallow in misery over what feels unfair. Choosing joy and having a heart of gratitude is a good way to get through until things begin looking up. I pray that happens for you soon.

Wishing you a holiday of laughter and good cheer with those you love most. Merry Christmas!
@Kandy

 

[Jaycey]

Sounds like you need to have a good discussion with both surgeons. The decision is yours of course. But I'd be inclined to go with the second opinion doctor. Going with the hypo-allergenic option seems obvious - no more worry.

Please let us know how your appointment goes!

 

[Jamie]

I can certainly understand your frustration with all this. But I also admire your approach to dealing with it.

I think Jaycey's suggestion of more discussions with your doctors is the best approach. Hopefully one or both of the surgeons (and maybe even your GP) can put the results of the blood test in perspective for you.

 

[Kandy]

I have a little more to report. The surgeon that ordered the allergy test called me yesterday. He still wants to try to just replace the poly insert first, though he said my issues could be instability or could be allergy, or could be both, and that there just isn't a clear cut way to know for certain. So, his recommendation is to replace the insert and let it heal. If that doesn't clear up my issues, then go back in and take out the metal. He doesn't use robotic surgery.

I saw my rheumatologist today to go over my test results. She doesn't think my knee issues are related to autoimmune. She said she feels like what is going on in my knee is way bigger than just an extra piece of cement floating around and thinks that I should not do the arthroscopic surgery, even though she is in the same practice group as my original surgeon who recommended that. She understood my confusion on how to decide which path forward. I do not want to do any more surgery than what is absolutely necessary, but I do not want to come back a year later and do more surgery because it wasn't enough. She recommended I get another opinion and gave me a name. I was already thinking about that this week, but just did not know who to go to, and needed a gentle shove to do that.

In the next 12 days, I will be visiting the 2nd and 3rd surgeons again to explicitly schedule surgery, plus I will visit this new 4th surgeon to see what he has to say. I hope that these visits will help to give me more clarity on the path forward. Happy New Year to you all.

 

[sistersinhim]

She recommended I get another opinion and gave me a name. I was already thinking about that this week, but just did not know who to go to, and needed a gentle shove to do that.

I agree with her.

He still wants to try to just replace the poly insert first, though he said my issues could be instability or could be allergy, or could be both, and that there just isn't a clear cut way to know for certain. So, his recommendation is to replace the insert and let it heal. If that doesn't clear up my issues, then go back in and take out the metal.

I'd hate for you to have a plastic replacement surgery and then it doesn't solve your problem and he has to go in again. The more opinions you can get, the better, in my opinion.

 

[Jamie]

I think you’re wise to get additional opinions. Although an arthroscopic procedure is less involved than a full revision, it’s still serious surgery and, if it was me….I’d want the surgeon to be reasonably sure it would resolve the problem. Good for your rheumatologist for guiding you to a good surgeon for an additional opinion. I’m assuming it’s someone outside the practice where you’re going now. You need independent eyeballs on your knee.

 

[Kandy]

Thank you Jamie and Sistersinhim. Sometimes, it feels like I am too much, like I must be an exhausting patient to have. I had to get the referral first from my PCP, to comply with insurance for that new second opinion. But then, this is a big decision. This 3rd second opinion will be outside of the clinic that my original surgeon was at.

Back at the end of November, my 2nd second opinion surgeon told me that maybe I could learn to live with the pain and that maybe my bad days were not all that bad. He said that I could keep coming in for aspirations to pull the joint fluid off, that maybe a brace would help (I had been wearing a brace, but just did not have it on for my appointment), and that perhaps I could learn to live with a new normal. He said his surgeries are scheduling about 4 months out. He is the one who would take everything out and start over with robotic surgery. He said he could make it better, but probably not as good as I want it to be. He also said that I would have to be happy with whatever the outcome was because there was no revision to the revision, that the next step was amputation (yes, he said that). He said to take the holidays to think it over and come back after the holidays with my spouse or at least a second set of ears if I still wanted to schedule surgery. Last night, my husband was talking about how he can tell that my knee has gotten worse, even in the last 2 months, and even when I consciously try not to complain. He said that if the doc schedules 4 months out, why didn't he go ahead and put me on the schedule already? My husband was going to go to that appt with me a month ago, but he got stuck on the phone with a client, and I left without him (or else I would have been late). My husband said last night that he thought the doc was a male chauvinist and would not have made that comment about bringing my wife if I was a guy. He also thinks that if he had been with me at that appointment, the doc would have put me on the schedule and not just sent me away. I just thought the doc said that because it was a big surgery and he was trying to encourage me to learn to live with the pain. I felt like the doc needed to hear validation from someone close to me that this knee was indeed negatively affecting my quality of life and not that I was just a big complainer. I thought the surgeon's position was more likely due to assumptions he made about me because I have had a lot of surgeries and less because I am a woman. I would love to hear your thoughts on whether you think the surgeon was being a male chauvinist, or was he responding that way because of assumptions that I am a hypochondriac, or was he just responding that way out of an abundance of caution and likely says that to all patients?

 

[sistersinhim]

If your knee continues to get worse, then it certainly sounds like something is wrong and not in your head.

He said he could make it better, but probably not as good as I want it to be. He also said that I would have to be happy with whatever the outcome was because there was no revision to the revision, that the next step was amputation (yes, he said that).

Mine told me the same thing. My knee isn't perfect by any means but is better. I'm happy about that. As far as a revision of a revision, we have had many members that have had numerous revisions on the same knee. Your situation might be different, though, and I would ask him why you can't have more than one revision.

My husband said last night that he thought the doc was a male chauvinist and would not have made that comment about bringing my wife if I was a guy.

I like your husband!

In my opinion, you can't have too many opinions when it comes to any surgery. Going to someone outside of your area and not known by any of the other doctors is the best thing to do. That way they wouldn't be swayed to go with a previous doctor's opinion.

 

[Jamie]

my 2nd second opinion surgeon told me that maybe I could learn to live with the pain and that maybe my bad days were not all that bad.

@Kandy .... don't worry about being a troublesome patient. You have a right be concerned about any surgery you are contemplating. We're here to help you reach the best decision for you and we don't mind going through each of your concerns.

I don't think much of this surgeon's comments about trying to learn to live with your increasing pain after a primary joint replacement. It smacks of trying to just brush off your situation. And, since he was connected with your original surgeon, his opinion really doesn't carry much weight. These guys share discussions and your records, so usually it's not a good idea to see another doctor in a practice (or even a hospital cohort) for a 2nd opinion. You want a fresh look at your knee from an independent doctor (or two).

He said that I could keep coming in for aspirations to pull the joint fluid off, that maybe a brace would help (I had been wearing a brace, but just did not have it on for my appointment), and that perhaps I could learn to live with a new normal.

This statement actually worries me and would be enough to make me discount this doctor completely. Every time you insert a needle into a knee that's been replaced, you run the risk of infection. Constant aspiration does nothing to help resolve whatever is causing it so it seems rather pointless to me and just another way of brushing your complaints off.

He is the one who would take everything out and start over with robotic surgery. He said he could make it better, but probably not as good as I want it to be. He also said that I would have to be happy with whatever the outcome was because there was no revision to the revision, that the next step was amputation (yes, he said that).

It may be that you do need a total revision of the knee. That happens sometimes for a wide variety of reasons and many times the revised knee (if done by a good revision surgeon with lots of experience in problem knees) will be much better. His comment about "not as good as you want it to be" seems a bit arrogant to me. It sounds like he thinks you have unrealistic expectations. Granted a replaced knee is usually not quite as perfect as your natural knee. But a replaced knee is not normally painful and certainly does not get worse with time unless something is causing the pain. The idea that you couldn't have more than one revision and the next step would be amputation is a good reason to cross this surgeon off your list permanently. Good revision surgeons can do multiple revisions when it's needed. While it's true that each surgery may be more challenging in terms of reaching the successful outcome desired by the surgeon and patient, there are times when this must be done and it has been just fine. You need a more experienced revision surgeon!

He said that if the doc schedules 4 months out, why didn't he go ahead and put me on the schedule already?

This is a very good question. How astute of you to notice.

My husband said last night that he thought the doc was a male chauvinist and would not have made that comment about bringing my wife if I was a guy.

Your husband also seems to have this surgeon pegged. Good for him. Sadly there are doctors like this sometimes.

I felt like the doc needed to hear validation from someone close to me that this knee was indeed negatively affecting my quality of life and not that I was just a big complainer.

While this is always helpful to have another person's confirmation of the severity of the problem, a good surgeon would accept your description of the situation and deal with it.

I thought the surgeon's position was more likely due to assumptions he made about me because I have had a lot of surgeries and less because I am a woman. I would love to hear your thoughts on whether you think the surgeon was being a male chauvinist, or was he responding that way because of assumptions that I am a hypochondriac, or was he just responding that way out of an abundance of caution and likely says that to all patients?

It doesn't really matter what the surgeon's reasons for his comments are. He's not engaged with you and your problem knee. Therefore he's not the surgeon for you. I'd keep looking until you find a doctor who is confident of himself and his abilities and who inspires confidence in you. Some of our BoneSmarties have been through many surgeon to find "the one." It's your life and your knee and you deserve the best surgeon you can find to help you.

 

[Kandy]

Thank you Jaime and Sistersinhim for your thoughts, advice, and comments. I am in a better place today, with a solid plan. None of the 2nd opinion docs are connected to each other or to my original surgeon.

I had an appointment with Doc 3 (the male chauvenistic doc) yesterday. I think Doc 3 made those comments in November for two reasons. First, I think I might not have totally relaxed my knee, and thus it did not appear to be as loose as it really was when I saw him in Nov. Second, I think he looked at the number of surgeries I reported and wrongfully assumed I was a surgery thrill seeker. I did not do a good job communicating to him in November just how devastating this knee is on my ability to do my job and on my quality of life. I think the doc wanted me to bring someone else there who knew me, but who might be able to give validation that I wasn't embellishing my plight. The doc did not appear to be arrogant, but pushed hard in November to talk me out of surgery. Everything was different yesterday. He said my knee was very unstable. He was concerned about my schedule with my son's wedding at end of April and that the window to do the revision was either soon or to wait until May, especially with surgeon scheduling 4 months out. He worked me into an earlier surgery date. He said in surgery, he would look at the laxity in my ligaments and decide if he could put in a thicker insert. If it was even from side to side and front to back, he would do just the insert, but he did not expect that to be the case based upon the physical exam. On a different note, he said he never would have done the total knee replacement in the first place based upon my xrays. I told him that I went to two knee surgeons before my TKR and did not want the TKR, but they both told me that was the only way to get relief from the large osteophytes on the wear surfaces of the tibia and femur. That does not matter now, because I can't go back and change the past.

I had an appointment with Doc 4 this morning. He echoed everything that Doc 3 said yesterday. He said my knee was badly unstable and he was appalled that my original surgeon could not see or acknowledge that. He also said that some knees were unstable in certain ways, but my knee was globally unstable. I really liked this doc too.

I was supposed to have an appointment with Doc 2 next week, but I cancelled it. Doc 2 was much farther away. He was going to just try the thicker insert, but put in the full replacement if necessary at a later date. He was a tad bit arrogant, and there were some things that put him as 3rd on the list of doing the revision compared with the Doc 3 and 4.

So pretty much, Docs 2, 3, and 4 are now saying the same things. They all said it was unstable and needed a revision. They all don't think the allergy is enough to be the main cause of my problem. They all don't think the recalled insert is the main cause of my problem, though they will look at it and examine it for premature wearing. They all said that the bone cement or calcified ligament was of no consequence and that the arthroscopic surgery that original surgeon wants to do is unnecessary and would cause undesired additional trauma to the knee. They all made comments that Sports Orthopedists work on broad issues and aren't always the best choice for difficult knee replacements.

Doc 3 and 4 were a close tie, but I chose Doc 3 over 4 because he has 15 years of experience while Doc 4 only has 8 years. Feb 17th is my revision date. From a mental state, I don't want to have to do this, but I don't want to stay like I am. I feel confident that doing the revision in February is the right choice. I feel great relief in knowing that there is a plan in place. Though, it sucks that I will miss my future daughter-in-law's bridal shower because I will be in the hospital. However, I am going to focus on the positives.

 

[sistersinhim]

Good news is that you have made a decision and have a date for your revision! I will add the information to your signature.

 

[thneed]

It has to feel good finally having a solid plan, even though it means another surgery. But your attitude is great and that's a big obstacle for many that you don't have to overcome. Good luck with the surgery, and congrats on your son's upcoming wedding.

 

[Jamie]

I'm so glad you have a good surgeon you trust now and a solid plan. I think you have made the right decision. Missing the wedding shower is too bad, but getting this going now will be better than trying to deal with a wedding and your current pain levels. With a lax knee, it's also possible to do even more damage to the ligaments if you continue to push walking on the knee.

This statement is one we stress here constantly:

They all made comments that Sports Orthopedists work on broad issues and aren't always the best choice for difficult knee replacements.

Unfortunately many people out there don't realize that just because a surgeon is an excellent sports medicine doctor and even maybe the doctor for a major league team, they aren't necessarily the best choice for a joint replacement. They are two different skill sets and knowledge bases. Thank you for posting this to reinforce what we tell our members!

 

[InkedMarie]

I think you’re doing the right thing but it still stinks you have to through it. Keep the wedding thoughts close! (My son gets married next Saturday!)
Make sure you get your wedding outfit & accessories before the surgery!

Marie

 

[eaglemom]

You certainly have done your research and thought this through. You've made your decision and I think its a good decision. Of course the timing isn't great, but I think sooner rather than later is a good thing.

 

[Kandy]

Thank you all for your support and encouragement. Yes, it feels good to have a plan in place.
InkedMarie, good luck with the wedding this week.

 

[InkedMarie]

Thank you all for your support and encouragement. Yes, it feels good to have a plan in place.
InkedMarie, good luck with the wedding this week.

Thanks! So exciting! Our son was married before. His daughter is 14. His fiancée has never been married & her two sons are 13 & 17. All three kids are the attendants!

Marie