Support Groups for Unsuccessful Knee Replacements

Welcome @vlopez03, I read your post in the other discussion and want to thank you for being an advocate for your sister. It must be terribly difficult for her after having 2 unsuccessful knee replacements. I doing know of any local support groups for recovering from knee replacements but there are many discussions here on Connect that may be helpful for your sister to learn what other members have shared with unsuccessful knee replacements or ones that have had problem occur during recovery.

My only suggestion for a local one if they exist would be to contact the hospital where your sister had the surgery to see if they have a local support or care team. Connect is a safe place to share and discuss medical conditions and ask questions. It's free to join and you don't have to join to read through the discussions but will have to join to post a comment or reply to a comment or discussion. The good news is that you can be anonymous and creative with the member name and your email address is protected and no one can see it.

Here's a list of discussions on knee replacements if you want to scan through them - https://connect.mayoclinic.org/search/. You can also change the search words to refine any topics you are interested in.

Hi John! I appreciate your reply. I will check into the hospital to see if there is a support group. It seems every time she has the replacement her scar tissue builds too fast and she is in chronic pain all day. She has tried so many different methods of relief and none have been successful. She just needs to talk to someone who can relate to how she's feeling.

Hello,

14 mo post op tkr. My journey has been long, and painful, not only physical but psychologically, spiritually and emotionlly. Animals recovering from surgery are treated better than I was. I knew very early post op my pain was mechanical in nature. I faced a level of medical gaslighting that was so bad, it caused severe, depression, anxiety, anger and ptsd. I face berated by two physical therapist and the surgeon; I was avoided and abandoned by my pcp, ridiculed and pressured by PA’s, one even caused physical pain to the point of causing me and my adult daughter to shed tears. One orthopedic said, “some people just feel their bodies more” when I came to him for help concerning the mechanical pain I was having. There is so much more to my painful ordeal. Long story short, and 13 months later a revision specialist finally told me why I was experiencing severe pain, the original surgeon, “overstuffed the lateral condyle, he further stated a revision would be too “risky” and I would be a “case study.” The surgeon also forced my constitutional VARUS into a neutral mechanical alignment without discussing it with me in pre-op consultation. He deformed me. I suffer with chronic sever pain especially so with weightbearing activities. I want justice. I was forced to do a ton of research while trying to recover from a barbaric surgery, to understand what was happening to me. All the while they knew, is what one therapist said to me during an evaluation.

I also discovered the original surgeon used an off the shelf components that didn’t fit my anatomy, therefore he chose a component that was too big - overstuffing my lateral condyle.

@yavet50
This thread must have some prior, separate discussions.

But your's "@yavet50" is a stand out horror story.
I can hardly believe your "revision specialist" found you in-operable.
I, however, have a SUPER orthopedic surgeon. Please message me if you're willing to travel (or forward your med records) as we are in the Detroit area. I'm sure he would give you a fair, unbiased, and highly experienced review.
Again, if you want please feel free to private message me for his contact info.

Hello,

14 mo post op tkr. My journey has been long, and painful, not only physical but psychologically, spiritually and emotionlly. Animals recovering from surgery are treated better than I was. I knew very early post op my pain was mechanical in nature. I faced a level of medical gaslighting that was so bad, it caused severe, depression, anxiety, anger and ptsd. I face berated by two physical therapist and the surgeon; I was avoided and abandoned by my pcp, ridiculed and pressured by PA’s, one even caused physical pain to the point of causing me and my adult daughter to shed tears. One orthopedic said, “some people just feel their bodies more” when I came to him for help concerning the mechanical pain I was having. There is so much more to my painful ordeal. Long story short, and 13 months later a revision specialist finally told me why I was experiencing severe pain, the original surgeon, “overstuffed the lateral condyle, he further stated a revision would be too “risky” and I would be a “case study.” The surgeon also forced my constitutional VARUS into a neutral mechanical alignment without discussing it with me in pre-op consultation. He deformed me. I suffer with chronic sever pain especially so with weightbearing activities. I want justice. I was forced to do a ton of research while trying to recover from a barbaric surgery, to understand what was happening to me. All the while they knew, is what one therapist said to me during an evaluation.

I also discovered the original surgeon used an off the shelf components that didn’t fit my anatomy, therefore he chose a component that was too big - overstuffing my lateral condyle.

@grandpun
Hello,
and thank you for your reply. I’m not sure how to private message you. I am interested in at least have another orthopedic review my diagnostic images and records. However, I can’t help but feel apprehensive due to the obvious unspoken code of silence between physicians / surgeons and how they use dismissive language to make a patient appear as if they are imagining things or somehow overly emotional, in addition, they minimize or soften the blow with colorful language that almost hides the seriousness of the implications of that error when writing clinical notes / reports that reveal another colleague / brother’s error. I’ve seen it first hand. It’s very frightening to think they will cover for the error of another doctor, that affects the life of an innocent and trusting patient. I’m so devastated and feel completely betrayed.

Hello,

14 mo post op tkr. My journey has been long, and painful, not only physical but psychologically, spiritually and emotionlly. Animals recovering from surgery are treated better than I was. I knew very early post op my pain was mechanical in nature. I faced a level of medical gaslighting that was so bad, it caused severe, depression, anxiety, anger and ptsd. I face berated by two physical therapist and the surgeon; I was avoided and abandoned by my pcp, ridiculed and pressured by PA’s, one even caused physical pain to the point of causing me and my adult daughter to shed tears. One orthopedic said, “some people just feel their bodies more” when I came to him for help concerning the mechanical pain I was having. There is so much more to my painful ordeal. Long story short, and 13 months later a revision specialist finally told me why I was experiencing severe pain, the original surgeon, “overstuffed the lateral condyle, he further stated a revision would be too “risky” and I would be a “case study.” The surgeon also forced my constitutional VARUS into a neutral mechanical alignment without discussing it with me in pre-op consultation. He deformed me. I suffer with chronic sever pain especially so with weightbearing activities. I want justice. I was forced to do a ton of research while trying to recover from a barbaric surgery, to understand what was happening to me. All the while they knew, is what one therapist said to me during an evaluation.

I also discovered the original surgeon used an off the shelf components that didn’t fit my anatomy, therefore he chose a component that was too big - overstuffing my lateral condyle.

@yavet50 I am so sorry you are going thru this. My husband had TKR November 2024 and has been living with pain since. He went back to his original surgeon on two occasions and was assured nothing was wrong. I finally located a surgeon that specializes in revisions. He has surgery scheduled for December. I had to keep charting this doctor to get additional tests. One of the issues, as u pointed out, one doctor (especially in the same facility) doesn’t want to dispute his co-worker. Hopefully the December surgery will bring my husband relief. You have to be your own advocate in today’s environment. Good luck