Shared experiences & advice: How do we safely navigate Connect?

Posted by ouch89 @ouch89, Mar 29 12:22pm

This forum is generally for patients to ask questions, but as another unsuccessful TKR recipient I have exhausted all my questions and come to this conclusion.
As a lay person when it comes to medical issues, I cannot respond to whether the many answers to questions that patients ask have merit or not, but I notice that responses cover everything on the spectrum from soup to nuts. Answers to questions can be misleading when responders relate their personal experiences. This can take the questioner down a rabbit hole with bad advice that may end in more pain, additional expenses, and frustration.
Consensus from many unsuccessful TKR recipients state that following surgery and months’ apart follow-ups you are on your own. Doctors are good at blowing you off by giving you hope and optimism for about a year before they subtly dismiss you by making no more appointments.
It is a sad commentary on our medical community when patients in pain, distress, and frustration reach out to other patients for advice and recommendations.

Interested in more discussions like this? Go to the Joint Replacements Support Group.

@ouch89 I am sorry that you are discouraged by the feedback you read here. None of us is a medical professional, just people sharing a tough situation.

The purpose of Mayo Connect is to allow people to share their health journeys. Many times, what is suggested as "this worked for me" gives someone just the initiative they need to approach their doc one more time, maybe in a slightly different way or to try PT again.

People today are faced with limited access to their docs and other providers, so getting some of their answers here can get them through a rough patch. And they get a realistic answer here about how long complete recovery can take, and that it is hard work - most doctors don't share that very clearly before joint replacements.

You may notice, too, that when someone seems to be facing a danger to their health - dislocation, infection, joint failure - they are urged to consult their care team. And when the Volunteer Mentors or the Mayo Connect Moderators see someone headed down a questionable path like unproven meds or therapies or potentially dangerous supplements, we are quick to correct.

On Connect groups like "MAC & Bronchiectasis" expert medical personnel are HARD to find for our rare conditions. Most people never heard of the infection or condition before they were diagnosed, and we provide them a support community where they can learn about treatment options and how to find the right care.

Finally - remember - you are reading posts from the 10-15% of knee recipients whose surgery had complications - not the 85-90% for whom it went smoothly.

If you were in charge of Mayo Connect, what would you do differently?

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@sueinmn

@ouch89 I am sorry that you are discouraged by the feedback you read here. None of us is a medical professional, just people sharing a tough situation.

The purpose of Mayo Connect is to allow people to share their health journeys. Many times, what is suggested as "this worked for me" gives someone just the initiative they need to approach their doc one more time, maybe in a slightly different way or to try PT again.

People today are faced with limited access to their docs and other providers, so getting some of their answers here can get them through a rough patch. And they get a realistic answer here about how long complete recovery can take, and that it is hard work - most doctors don't share that very clearly before joint replacements.

You may notice, too, that when someone seems to be facing a danger to their health - dislocation, infection, joint failure - they are urged to consult their care team. And when the Volunteer Mentors or the Mayo Connect Moderators see someone headed down a questionable path like unproven meds or therapies or potentially dangerous supplements, we are quick to correct.

On Connect groups like "MAC & Bronchiectasis" expert medical personnel are HARD to find for our rare conditions. Most people never heard of the infection or condition before they were diagnosed, and we provide them a support community where they can learn about treatment options and how to find the right care.

Finally - remember - you are reading posts from the 10-15% of knee recipients whose surgery had complications - not the 85-90% for whom it went smoothly.

If you were in charge of Mayo Connect, what would you do differently?

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This is the site which helped me to go forward with my MUA (Manipulation under anesthesia). I would not have a better functioning joint if I had not proceeded with it.
I do disagree with you about the stated 10-15% of unhappy replacement folks. The stats are much higher than that depending on sources and I believe surgeons definitely do not self-report either. My surgeon was reluctant to do an MUA, saying he had only performed a handful???
The KSS score does not allow clarification- I could freely walk up stairs from the get go. Why does it still hurt to go down after almost a year?

With every surgery comes all of the variables, patient's and surgeon's- so much to consider as a consumer- this site helps, so appreciate this site.
https://www.jbjs.org/summary.php?id=272
https://josr-online.biomedcentral.com/articles/10.1186/s13018-022-03205-2

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Both articles were very helpful enlightening. Thank you for sharing. 👍🏼

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The one article spoke of corticosteroids injected during for pain control and movement enhancement- I had triamcinolone injected during my MUA. Major side effects. Every one possible. Worst was my heart racing and pounding. Never again.

Never think a steroid shot is something to take lightly.
https://www.drugs.com/sfx/kenalog-40-side-effects.html#serious-side-effects

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Hello @ouch89,

You may notice I updated your title from "misleading advice" to "Shared experiences & advice: How do we safely navigate Connect?"

You bring up a good talking point as Mayo Clinic Connect continues to grow. Mayo Clinic Connect is a place for members to share their experiences to help other members not feel alone on their journey and to maybe offer new questions and approaches to their treatment that a member can talk with the healthcare provider about.

As mentioned in the Community Guidelines, all information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.

@ouch89, You also mentioned going down rabbit holes or being overwhelmed with replies, questions and experiences. With such an active community, it is easy to see how a member could be overwhelmed by the suggestions and questions. It is important to remember that no treatment decisions should be made without a medical professional's input as well. Do you have any suggestions for how members can better process and utilize Mayo Clinic Connect and the experiences and questions they will receive?

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That's the rub! Your statement "for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment" is the problem. I like many others have been there, done that, and see this issue as people in a state of desperation because their medical community has failed them. Many unsuccessful TKR patients were willing to endur the many months of pain, sleepless nights, prescription side-effects, and countless hours of PT only to discover they are worse off than before surgery. In my case I never waivered from any professional recommendations.
My post is about desperate people that have exhausted every professional medical avenue for help.
I may suggest that Mayo Clinic play a more active role, i.e., comment on suggestions that obviously have no merit and lead desperate people willing to latch onto any and all advice.

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@ouch89

That's the rub! Your statement "for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment" is the problem. I like many others have been there, done that, and see this issue as people in a state of desperation because their medical community has failed them. Many unsuccessful TKR patients were willing to endur the many months of pain, sleepless nights, prescription side-effects, and countless hours of PT only to discover they are worse off than before surgery. In my case I never waivered from any professional recommendations.
My post is about desperate people that have exhausted every professional medical avenue for help.
I may suggest that Mayo Clinic play a more active role, i.e., comment on suggestions that obviously have no merit and lead desperate people willing to latch onto any and all advice.

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Totally second what ouch89 says.
20% of TKR are not successful. If you happen to be one of the 20% there is very little information of how to get help and TKR surgeons are not interested in helping. Seems there only interest is the implant. My issue is soft tissue but finding someone to diagnose and treat seems impossible. We are only one that feels what is going on inside the knee.

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@donkey

Totally second what ouch89 says.
20% of TKR are not successful. If you happen to be one of the 20% there is very little information of how to get help and TKR surgeons are not interested in helping. Seems there only interest is the implant. My issue is soft tissue but finding someone to diagnose and treat seems impossible. We are only one that feels what is going on inside the knee.

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I have long contested the stats on successful TKR and listen to the argument that you'll only hear from those that were unsuccessful. Having been exposed to statistics, probabilities, and bell curves during my academic years, my story goes like this: I have a grouping of fourteen fellow retirees on email from my former employer that have had TKR, both successful and unsuccessful. The unsuccessful count is 9 with most of the common complaints, mainly pain and stiffness, and 5 claiming success. During the months and years of communications with the successfull TKR recipients it's come to my attention that they call a success when they have less or no pain, even though they may still have stiffness and less ROM. My question is "what is success?" If you can read anger between the lines it's because prior to my first surgery 7 years ago I had just completed a deck that required going up and down a ladder, and now I can no longer take my wife out dancing.

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Has anyone ever had revision surgery after original TKR prosthesis is failing after 9 years? My prosthesis is falling apart inside my knee after only 9 years. Thanks for any replies

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@caroleborg

Has anyone ever had revision surgery after original TKR prosthesis is failing after 9 years? My prosthesis is falling apart inside my knee after only 9 years. Thanks for any replies

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I am facing a revision surgery after my TKR became unstable after only 4 years of implant. I keep putting off the surgery because I know what I am facing. Good luck to you.

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