Knee Replacement Failure - Need total reconstruction

Posted by babette @babette, Jul 27, 2019

I'm pretty devastated, everyone. I had my R TKR a year ago and always knew something wasn't right. My initial surgeon said everything looked great and to give it time, PT, etc. Well I went to one of the top ortho hospitals in the country yesterday and saw a surgeon who comes very highly recommended. He told me my femur is out of alignment, there is a problem with a ligament, and my knee cap is off to one side. I wish I had written down more specifics, dh was with me but once we heard this would all have to be redone, I think we went into kind of shock and didn't process the details very well. **He understood completely why I've been in so much pain this past year. ** He referred me to a colleague who does more complex revisions than he does and I feel great about that but have to wait a month to see him and begin the process. All over again. I have no idea what this will be like, the actual surgery, recovery, etc.

I'd love to hear from others who have gone through this. Also, has anyone successfully sued the surgeon who screwed up? I'm furious to have lost a year of my life to this and now even more time to the repair and recovery.

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@gravity3

A ringing endorsement for being a strong advocate for yourself. I have found it exhausting to do the research, reading, questioning providers,etc at this point in my life 76. Just when you think you're retired you find that medical self advocacy is a full time job. Sigh

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I sought a second opinion when my first team said my numbers were great and I wouldn’t need an MUA. I had reported to them that the numbers were only achieved in therapy, after much aggressive, painful approaches, and I didn’t retain any gains whatsoever after each session. I knew something wasn’t right and I wasn’t about to settle on a non functioning painful joint. The 2nd Dr. said no one would follow up on my knee if I didn’t try an MUA first.
If only they had done something at my 6 week checkup.
You have to be your own advocate for sure.

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@gravity3

A ringing endorsement for being a strong advocate for yourself. I have found it exhausting to do the research, reading, questioning providers,etc at this point in my life 76. Just when you think you're retired you find that medical self advocacy is a full time job. Sigh

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I agree. I had to do my own research and go through patient advocate to get my surgeon to do an MRI when I complained of extreme discomfort caused by tightness and stiffness. The surgeon placed a lot of emphasis on the x-ray which showed that the healing was going well. He practically sealed my health record ,wrote "no x-ray" on it and would not respond to my request for an MRI. However, I was going through literal hell and x-rays do not identify the problems with scar tissue and other soft tissue issues. MRI's and CATSCANS are the correct tools to use(among others).My understanding is that x-rays mostly/only deal with hard tissue like the implant. It seems as if it is all about the extension and flexion numbers. Discomfort is not important. What are good numbers if you continue to experience extreme discomfort? I am almost 7 months out from tkr surgery after having 2 MUA's and an arthroscopy. I have shown some improvement with the stiffest and tightness and but I still experience a lot of discomfort. The journey continues to be very rough!!! I did some crying today, wondering how much more improvement I am going to experience. I continue to do therapy and lean deeply on my faith to see me through. Otherwise, I will have to suffer through to the end of the year when "Another surgeon will give me a second opinion "The norm seems to be that they will not look at a tkr patient before a year has elapsed.
Scar Tissue seems to be the boogey man for any and everything ( poor surgery techniques??) that might have occurred during surgery.
I feel that more focus is f placed on the schedule to get to the next operation and no allowance is made for those of us who might be prone to "scar tissue build up.
We seem to be the forgotten. We did not do well with the surgery and it seems as if very little research is being done to address the "scar tissue problem"
In the meantime, I will continue to attend therapy and "PRAY"

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@jfearon611

I agree. I had to do my own research and go through patient advocate to get my surgeon to do an MRI when I complained of extreme discomfort caused by tightness and stiffness. The surgeon placed a lot of emphasis on the x-ray which showed that the healing was going well. He practically sealed my health record ,wrote "no x-ray" on it and would not respond to my request for an MRI. However, I was going through literal hell and x-rays do not identify the problems with scar tissue and other soft tissue issues. MRI's and CATSCANS are the correct tools to use(among others).My understanding is that x-rays mostly/only deal with hard tissue like the implant. It seems as if it is all about the extension and flexion numbers. Discomfort is not important. What are good numbers if you continue to experience extreme discomfort? I am almost 7 months out from tkr surgery after having 2 MUA's and an arthroscopy. I have shown some improvement with the stiffest and tightness and but I still experience a lot of discomfort. The journey continues to be very rough!!! I did some crying today, wondering how much more improvement I am going to experience. I continue to do therapy and lean deeply on my faith to see me through. Otherwise, I will have to suffer through to the end of the year when "Another surgeon will give me a second opinion "The norm seems to be that they will not look at a tkr patient before a year has elapsed.
Scar Tissue seems to be the boogey man for any and everything ( poor surgery techniques??) that might have occurred during surgery.
I feel that more focus is f placed on the schedule to get to the next operation and no allowance is made for those of us who might be prone to "scar tissue build up.
We seem to be the forgotten. We did not do well with the surgery and it seems as if very little research is being done to address the "scar tissue problem"
In the meantime, I will continue to attend therapy and "PRAY"

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I have had 4 revisions since my original TKR in 2018 (and 6 MUA, 2 arthroscopic and 3 days inpatient continuously with CPM machine and epidural) and continuous aggressive PT all along and am STILL stuck at 80 deg flexion and -10 extension. I've had 4 different surgeons throughout due to increased complexity with revisions and retirements. I've found that most will want to wait a year (if no infection or loosening) as it generally takes a year for full healing from the previous TKR. My whole world has shrunk through all of this and I am now 51, struggle to do any normal tasks and virtually have no energy outside of work to do anything. I no longer travel, hike, garden or spend time with my active friends. It hurts to sit, stand, walk or do anything other than lay down. I work 4 jobs to keep up with my medical bills and I am exhausted all of the time.

I know that scar tissue is a part of my situation but I'm not sure it's the only issue. Each surgery has yielded some gains and a few new issues, including an 18 month focal dystonia that took quarterly botox treatments in hams and quads to quell- I could barely walk. It has been awful. I'm so relieved to find others out there on this very lonely journey, though sorry for what we are all going through.
Many well-meaning family and friends keep giving "helpful" advice and showing me exercises and implying that I or my wonderful surgeons have done something wrong. I don't know that any of that is the case (I've certainly done the work and spent tens of thousands in PT and other care that was not covered by insurance). I think the research is not yet advanced in complications and solutions for the soft tissues and structures around the joint that make it work properly. I know Mayo Clinic is advancing on this and I am hopeful they have some answers for me now, as my "good knee" is suffering immensely from carrying the load for 6 years and now also needs replaced. If the 2nd knee gets bound by my aggressive scar growth then I will have 2 legs that don't bend far enough for normal activities and I don't know how I can function at all. As it is I cannot go up/down stairs bilaterally. Without 1 good joint I would not be able to go up or down stairs at all, nor walk up a ramp, get dressed, get up when I fall down. I would need to move from my beloved home

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@jfearon611

I agree. I had to do my own research and go through patient advocate to get my surgeon to do an MRI when I complained of extreme discomfort caused by tightness and stiffness. The surgeon placed a lot of emphasis on the x-ray which showed that the healing was going well. He practically sealed my health record ,wrote "no x-ray" on it and would not respond to my request for an MRI. However, I was going through literal hell and x-rays do not identify the problems with scar tissue and other soft tissue issues. MRI's and CATSCANS are the correct tools to use(among others).My understanding is that x-rays mostly/only deal with hard tissue like the implant. It seems as if it is all about the extension and flexion numbers. Discomfort is not important. What are good numbers if you continue to experience extreme discomfort? I am almost 7 months out from tkr surgery after having 2 MUA's and an arthroscopy. I have shown some improvement with the stiffest and tightness and but I still experience a lot of discomfort. The journey continues to be very rough!!! I did some crying today, wondering how much more improvement I am going to experience. I continue to do therapy and lean deeply on my faith to see me through. Otherwise, I will have to suffer through to the end of the year when "Another surgeon will give me a second opinion "The norm seems to be that they will not look at a tkr patient before a year has elapsed.
Scar Tissue seems to be the boogey man for any and everything ( poor surgery techniques??) that might have occurred during surgery.
I feel that more focus is f placed on the schedule to get to the next operation and no allowance is made for those of us who might be prone to "scar tissue build up.
We seem to be the forgotten. We did not do well with the surgery and it seems as if very little research is being done to address the "scar tissue problem"
In the meantime, I will continue to attend therapy and "PRAY"

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In my research, i see that 6-10% of people having TKR’s have problems with scarring (Arthrofibrosis), to varying degrees. There is little written about this problem, as in the many medical articles i have read, they consistently say that doctors don’t like to report on this. I had a TKR in May of last year and have had 4 subsequent procedures to rid me of the scarring, which causes, pain, inflammation and a limited ROM. I went to the Hospital for Special Surgery (Manhattan) for a second opinion. They recommended that i have revision surgery to switch me over to a hinged replacement. They remove tendons, where they claim, that a lot of the scarring occurs and the hinge then takes on the function of tendons. I have a lot of doubts about whether to have this surgery done or not.

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It is surprising how little I knew prior to my TKA and how little a surgeon does talk about even though I thought I was pretty informed.
Keep advocating and reading. Pursue an answer. We can’t give up.
Miss my old knee- pain and all.

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@mwatts91757

Ok thank you. And only Brigham’s &women’s does this.
I’m sorry there were so many responses I’m getting things confused . I can’t remember if it was you who told me Brigham+women’s or somebody else

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Many orthopedists use the conformis. Knee

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Hello, I just joined. I read you comment, I had knee replacement 7 months ago and my leg is giving me lot's of problems and I don't know if this is normal or not. I am a 75 year old male. How did you know your knee was getting worse? Phil

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@cathymw

It is surprising how little I knew prior to my TKA and how little a surgeon does talk about even though I thought I was pretty informed.
Keep advocating and reading. Pursue an answer. We can’t give up.
Miss my old knee- pain and all.

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I had the same problem , my TKA was 7 months ago and I am having problems with my knee. Pain
My doctor didn't say much, I went to rehab learned how to walk after rehab I am adrift if I do to much my knee is very sore and I don't want to just sit around----STUCK Phil

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It’s very very hard to prove malpractice.
I am glad you are finding someone who can redo it and feels confident about what is wrong.
Since you are having so much pain and issues, take the $ and time to pay for a metal allergy test. My original surgeon kept saying everything was fine on my knee when I finally went somewhere else, it turned out the tibia plate was loose because I am apparently allergic to nickel (had the blood test done and I am so glad I did! )
did call a few lawyers but none would take my case. I finally dropped it bc I needed to focus the energy on getting better.
Once I got a titanium knee after the revision my recovery was much faster than the first knee.

This one has to be replaced as well but that’s a whole other story.

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Dr put nickel in my knee and i was allergic to nickel. Revision surgery was done to remove nickel.
It is two and half year and i am in worse situation with my knee. It feels like size of implant is not right. Feel tightness and sharp pain in my knee
Dr are only looking at xray and ignoring my pain and stiffness. It us effecting my hips and back now.
Any suggestions advise welcome

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