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Revision TKR Still having difficulty .... from Amberpep

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amberpep

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I'm kind of at the end of my rope and have resigned myself to having chronic pain in my right knee from the TKR. I didn't quite know where to put this post, because I don't know where to find my many earlier ones to add it, so I hope this is OK.

My knee healed very well, (surgery was May, 2011) did P.T. and it was great for about a year, then started to really hurt again. My Ortho. Doc. went in again and it was full of scar tissue which he cleaned out. Back to P.T. I'm done with all that.

I continue to have pain in the right side of my knee, daily. I have a hard time getting out of chairs, sometimes it hurts to walk and other times it doesn't. I know it's typical to have pain when the barometric pressure goes down, but this is all the time. Sometimes I wear a knee support on it and that helps.

I have tried 2 different "highly rated" (really?) supplements ...... Instaflex and Celadrin, and neither has done too much good. Maybe I didn't use them long enough.

Can anyone give me any advice. I see the left knee being replaced in the future and I won't do it unless I can get this taken care of. Thanks so much everyone.

abby - RTKR - May 2011
R - cleaning out of scar tissue - June 2012
 

RunA42K

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Hi @amberpep so sorry that you are having problems this far out. Actually that could have been me writing your post because that is me exactly. My TKR was March 28, 2011, I too was doing ok feeling pretty good and active. Then started sliding backwards. I too was full of scar tissue which had to be surgically removed but that did not end my problems my knee still hurt all the time and was swollen. Fast forward...I found a new doctor, had a revision December 2, 2013 and at 4 months pot op now this new knee is 100 times better than the first one. Bottom line here, do not settle for having pain, I waited too long with a blind allegiance to my first OS. You don't have to hurt, please find a new Doc or two and get some other opinions!!
 
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maryo52

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Well the supplements are meant, I think, for "native" joints. With metal prostheses, not sure these would help.

I think you have to go get a second opinion. I can tell you what happened to me, and to RunA4K. Our TKRs are "lax," which results in chronic irritation of the synovium, and one outcome of this is the accumulation of scar tissue. Skigirl also had a loose knee, except her ortho identified the problem and addressed it surgically. She had a spacer exchange, which worked in her case, but in most cases of laxity the remedy is not that simple.

I wear a rigid brace to support my knee. That makes my knee feel better and I think it protects my ligaments from the trauma of a lax knee. But if I didn't wear the brace, I would have pain in the same area and scar tissue. My ortho went in at year 2, at my request, to take our scar tissue (which was done at month 4 as well). But he never identified the laxity. It took a second opinion to do that.

I mention the above because, you never know, it may be the case with you. But my suggestion is to get a second opinion with a revisionist, which is an ortho highly experienced in problem TKRs. He wouldn't necessary revise your TKR.

I was offered revision but have chosen so far to make do with what I have, and the brace enables that. But I have lately been doing some reading on this topic (flexion instability), and I think some of the problems described on bonesmart may be due to this issue but we have no way of knowing until we seek a second opinion. I don't mean to make you paranoid, but you know something is wrong and that your ortho is not solving the mystery. Time to move on.
 
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amberpep

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Thank you both so much for your replies. I've never heard of a lax TKR, but it sure makes a lot of sense. So you don't think I should go back to my original O.S. to see what he says? That leaves me in a bit of a quandry. My O.S. is part of a group of Orthopedists, each who has their own specialty. There are 2 that specialize in knees and hips. The other O.S. was the one who did my 2 menisectomies about 10 years ago. Do you think I could go to him, or is there an actual title of "revisionist?" If so, how do you find a revisionist?

The group I've used is about 50 min. from my home, as is the hospital. The hospital is excellent. If I go to an O.S. closer to home and the hospital in my town ..... well, I don't feel so great going to that hospital. After what you said, I do think you're probably right.

I'm just not sure who to go to. If I go to someone out of their group, they'll have to turn over my records to the new one, won't they?

My knee definitely does feel better with this soft brace on ..... it's rather a tight black and gray knee cover, and it applies pressure to the knee while I have it on, which seems to help a fair amount.

Anymore advice you can give me would be hugely appreciated. I do have what they call a "short runner" brace, which I could wear I guess. I thought once the surgery was over, it was over ..... I never expected it to be loose. Thank you so much, and please let me know what you advise.

I know at some point the other one will need to be done, but I refuse to do it until this one is straightened out.
abby
2 meniscectomies - mid 1990's
RTKR - May 24, 2011
Scar Tissue removal - November, 2013
 
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maryo52

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Sure, go back and see your original ortho. Who is he and where is he located? My thinking is that he's had his chance to resolve your issues, and it's possible that some mistake of his is causing the problem and sometimes a doctor can be blind to their own mistake. A second opinion gets a fresh set of eyes on the situation, and, yes, it shouldn't be someone from that same practice.

I don't think you should go to someone closer to home, though, for all I know, Dr. Right lives right in Frederick. Here's the thing: with insurance footing the bill, you can go to a run of the mill ortho or you can go to a very experienced ortho for the same cost, right? John Hopkins would be one choice. There are good practices in DC I'm sure. My mom had a partial with Dr. Gerard Engh at the Anderson Clinic in Alexandria VA and had a very good experience plus it lasted until she died at 94.

My theory about knee braces is that they create a welcoming sensation of pressure, and if you have heard about the gate theory of pain, sensations in one area can actually mask sensations in another area. That's what I think happens.

Let me summon @skigirl and @Jamie to weight in . . .
 
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amberpep

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Thanks Mary ..... I know I need to get a second opinion ..... going back to my original one would be foolish. I guess it's a combination of loyalty and not wanting to hurt someone's feelings. Interesting enough, my son, who works in D.C. lives in Old Town Alexandria.
I hate the thought of having to do something yet again. I live alone, my girls live 4-5 hours away and my son is a Lawyer in D.C. and is rarely free.
Maybe I'll check on this doctor you mentioned in Alexandria and see if that would be a possibility.

Thanks much,
abby
2 menisc. - 1995 & 6
RTKR - May 24, 2011
Removal of Scar Tissue - Nov., 2012
 
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amberpep

amberpep

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I just spoke to a couple who have had a lot of experience with the hospitals in and around D.C. They strongly suggested I make an appt. with an O.S. at Georgetown Hospital. I'm going to look up the names of the O.S.'s there that do knees, and then find out their credentials, and call them and see if they know anything about them. Problem is, my son will have to take off work and take me for the appts. and surgery because I panic when I try to even drive around the D.C. beltway, let alone in the city. But, I have to do something .... I don't want to put up with this forever.
abby
 

maryo52

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I used to be secretary for a legal firm in DC in the 70s (I grew up in Arlington but "ran away" at age 24 to Maine). They had 80 lawyers on three floors right at Connection and M. The associates were always burning the midnight oil to get to be partners. Try to think of it this way: you're doing your son a favor by getting him out of the rat race.

I'm the same way, don't want to appear disloyal. If you think of your knee as your child, does that help? You are advocating for your poor lil' innocent child.

I have also heard there is a strong ortho department at Georgetown. That is a good plan. Dr. Gerard Engh is getting on in years but I think he has a son (and grandson!) in the practice. At one time they were on the cutting edge of PKRs.

It sounds like you are getting your plan together. Let us know.
 

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It sounds like you need to have somebody new take a look at your knee---I concur with the others. It would not hurt to go back to your original OS, but seek another opinion, as well.

you should not have to resign yourself to being in pain after your TKR---somebody has to make a determination about what is going on so that you can get that taken care of.
But, I have to do something .... I don't want to put up with this forever.
I would hope that you get this looked at pronto---it is you life and you deserve to live it in a pain-free life style.
 

referee54

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I hate the thought of having to do something yet again.
I understand how you feel---but, as Bonnie has said and one---look at what it has done for her---and she has been able to re-establish her life. Get that second opinion and then move forward with what needs to be done so you do not have to deal with the pain.
 

RunA42K

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Hi again Abby, I sure know what you mean, I never in my wildest dreams thought that 'I' would ever have a revision! I've read about others on Bonesmart having revisions, but NO that would never be me...The thing is, you know that it is not right and you don't have to accept that!

Our knees (you and me) were/are at the same knee age when we knew finally could say that they were not right. I kept waiting to get better but it was just not happening. Two years and 8 months I had that knee and probably only about 6 months of it was good. I felt guilty considering going to another doctor, but came to grips that "this is my life, not my doctor's life" I could not live the rest of my life that way I was. Now all I can say is why did I put up with it and wait for so long???

For almost all of my first TKR I was wearing a compression sleeve (once the scar healed) and that always felt comforting just like your soft brace does. Only problem it gives you that instant feel good but does not correct the problem. Just don't resign yourself that you have to live this way.

As for your son the lawyer, I would dare to say that I am sure that he would be very happy to take care of his Mom! If he does not know about your issues he cannot help you but if you let him know I am sure he'd be happy to take care of his Momma!
 
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amberpep

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Thank you all so much for writing. To Mary and RunA ....... the "brace" I am wearing is a soft sleeve type one too. It's gray and black and puts pressure on my knee when I wear it. It feels good to wear it. I know I have to get another opinion, but even though I'm only about 40 miles away from D.C., it feels like a whole other world .... that sounds juvenile, but the only time I go down there is when I'm visiting my son in Old Town Alexandria and he and I go over there.

My son is a Patent-Lawyer at Constitution and 14th St. and being a rather "newbie" ..... he's been there 3 years ...... he works like a dog. He's often there on Saturdays and late in the evening. When I had the original TKR he did take me to the hospital (Montgomery General in Olney) as I had to be there by 6:30. He planned to wait but it took longer than the doctor anticipated and he left and they called him when they were done. I was only in the hospital 3 days, then in a rehab place 3 days and home. I was alone for a week before a girlfriend from PA came down with me for a week. Bless her.

One of my girls and her husband came up Memorial Day weekend, but essentially I have didn't have much help from my kids. My other daughter rarely ever comes and didn't then at all. I know it sounds as though we don't get along, but we really do .... I guess they're just very involved in their own life. They're 42, 40, and 30. I'm thinking of getting a Life Alert because even though I'm in excellent health, with the exception of this knee, I realize living alone puts me at risk.

I guess I'll call the doctor (Evans) at Georgetown tomorrow (that's who this couple recommended) and set up an appt. I'll probably have to wait quite awhile to get in and that's OK. I'll ask my son if he'll take me, and if he can't I'll just take a taxi.
I do feel disloyal to my original O.S. although I know that's ridiculous. I have a girlfriend who I could ask also.

Thank you all for your input ..... anything else, please share it. I sure never expected this by now .... I thought by now I'd be riding my bike and doing my low impact aerobics tape. Such is life!
abby
 
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Jamie

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You definitely need some additional opinions. And they need to be from an experienced revision surgeon. There are doctors who primarily see patients who have continuing problems after a TKR like you are having. This is CRITICAL. And....it needs to be someone in a larger hospital clinic because they are more likely to have seen and experienced problems similar to yours. You really don't want to be somebody's experiment while they try a variety of things to resolve the problem!

I do have the name of one revision specialist at the University of Virginia. That is a drive for you, but I'll provide the name anyway just in case you are willing to chat with him.

Dr. James A. Browne
University of Virginia Medical
Charlottesville, VA
 

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Maybe the Charlottesville address will be easier---but, just take a cab when you are in DC---that is what they are for and you won't have to worry at all about driving. I always use Cabs in Chicago when I visit the children and they are not that expensive. That way your son will not have to take off from work.

But, you do need to see someone else---knowledge is power, once you know the problem, you can decided how to fix it. Kelly
 

maryo52

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I looked up the guy at Georgetown. Yes, he is a revision knee surgeon. And you have a good report about him. I think that's a great choice.

You are a bit closer to Baltimore, and John Hopkins is in the top 10 nationwide in orthopedics. So why not call them? Often these big orthopedic practices can get you in pretty quickly. They assign some revisionist the job of seeing unhappy TKR patients one day a week, often along with a medical student or resident.

I am getting the gist of your hesitance in this matter. You don't like to trouble people, do you? And you've been all too happy to encourage your kids' independent lives. In any case, I'm like that. I had no trouble asking my 23 year old to go get his 90 y.o. grandmother from the hospital after lung cancer surgery and get her home 60 miles away (I had a commitment that day), but I wouldn't ask him to get me a drink of water. And I bet your son has a better chance of making partner if his boss hears him say he needs to take off to help his mom.

In any case, if you have a friend who would take a week off to help you, I bet she'd be willing to go with you to DC or Baltimore. I'd even wager that she'd be disappointed if you didn't ask. If you think about it, and you were the friend/daughter/son -- wouldn't you prefer to be asked to help?
 
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This is amazing .... I cannot believe what you all are saying ..... you are sooooooo right about not asking for help. I always feel like I'm imposing. Interestingly enough both my girls live fairly close to Charlottesville, VA and my son in law used to work at UVA as a supervisor of their DNA lab.

Jamie ..... I think I'm going to call a man my P.T. suggested. He is at Union Memorial Hospital in Baltimore and his last name is Ebert. D.C. just scares the bejeebers out of me. Johns Hopkins is excellent, but, for those of us here, it's a very teaching centered place with little to no patient interraction ..... they only take people who offer them a challenge. I know, hard to believe. My P.T. gave me 4 names at different hospitals and I liked what I read about Dr. Ebert. I need to call today, but truthfully I'm scared. Isn't a revision a total redoing of the knee?
abby
 
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amberpep

amberpep

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Well, I did it .... I made an appt. with a Dr. Ebert at Union Memorial Hospital in Baltimore .... it's part of the MedStar group and is affiliated with Georgetown. He is one my P.T. recommended most. I couldn't get in until June 19, which speaks well of him, but I'm wondering if I should wear that elastic brace, or a firmer one I have til then in order not to make it worse. Truthfully, I'm scared to death. Odd, because I wasn't with the original TKR, but I am with this one. Maybe it's because I'm not familiar with the doctor or the hospital.
abby
 

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So you don't think I should go back to my original O.S. to see what he says?
Like was said before - he had his chance and he fluffed it. You really want his hands on you again?
is there an actual title of "revisionist?" If so, how do you find a revisionist?
No there isn't but in their profiles they will list they do knee "arthroplasty and revision arthroplasty. We made this article to help people find one Using "Find a Clinic" to find revision surgeons but Jamie's now got a hand in the real thing!
you are sooooooo right about not asking for help. I always feel like I'm imposing.
You should read this! Nurturing mother: how to let go and accept help
 
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I need to call today, but truthfully I'm scared. Isn't a revision a total redoing of the knee?
abby
Like you, I was scared about having a revision, but it turned out to be not so bad after all. Yes, it is a re-doing of the knee, but if it fixes the problem it's really worth it.
 
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