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Is there a desire from the medical community to not know these things?
I'd phrase it differently: there is a desire in the medical community to need to know less.

I'd balance everything you have said (much of which I outright agree with) with the following points (in no specific order):
  • the statistics on drug compliance are dreadful with something like 50% of patients getting slack within one year (perhaps till their first stroke when they get it, but may not get a second chance)
  • knowing the statistics surgeons bias towards keeping it all under their control (which they don't control with OAT)
  • the labs don't give a shlt about anything other than
    1 their bottom line
    2 not being found culpable
    So "near enough is good enough"
  • few people are really any good at DIY, being organised or being consistent and there is no qualifications or assessment criteria used to see if you're smart enough to do it

🤷‍♂️
 
I'm sure the same topics resurface once in a while. Maybe there should be a FAQ list somewhere?
so with you having my back
1692583325552.png

I'll say:
nobody would read the FAQ (except the people who lurk and don't ask questions and who then manage to educate themselves without joining for the camaraderie).

Right now we have participants (at least one comes handily to mind) who don't even read the replies to the questions that they post (quite frequently and repetitively) nor search. I've literally seen the same question asked directly within the thread of someone else asking that actual question.

I have the view that if self help books worked there wouldn't need to be so many on the same topic.



However as you've seen of me here I'm frequently unable to learn and offer actual help on specific topics, probably because I've spent a lot of time being able to have this attribute

1692583583601.png


Being a bit aligned with Zen helps too.

: -)
 
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It boggles the mind that a large study has yet to be done that shows average time to reoperation for mechanical aortic valves placed in patients under 40. It would be useful to use patients with no comorbidities. It would be useful if only patients compliant on anti coagulants were included.
Seems like a great idea. Do you think it's a matter of analyzing data that large professional organizations (like STS) already have?

Or is it a matter of actually doing a long-term follow-up survey? (In which case I could see some issues with even young assistant professors getting grants for a 40-year long study. 🤷‍♂️)


they only now realize these bio-valves are developing thrombus formation, because of wnl ( we never looked). Would an anti-coagulated toronto spv bio valve have lasted 17 years on average vs 10?
Seems like this might also be important to TAVR recipients, who were not qualified for SAVR because of age.
 
I'll say:
nobody would read the FAQ (except the people who lurk and don't ask questions and who then manage to educate themselves without joining for the camaraderie).
That's possible. It was just a thought, that the FAQ would be useful for some people. And that it may make replies simpler. But it would also be some labor to write and maintain.

Right now we have participants (at least one comes handily to mind) who don't even read the replies to the questions that they post (quite frequently and repetitively) nor search. I've literally seen the same question asked directly within the thread of someone else asking that actual question.
I guess I hope they are exceptions to the trends :)
 
It boggles the mind that a large study has yet to be done that shows average time to reoperation for mechanical aortic valves placed in patients under 40.
This may not be exactly what you are looking for, but it is a 30 year follow up study on the St Jude mechanical valve. The bold is mine to emphasize your interest pertaining to reoperation.

For aortic valve:

"Thirty-year freedom from reoperation, thromboembolism, valve thrombosis, bleeding, and endocarditis was 92% ± 2%, 79% ± 3%, 96% ± 1%, 56% ± 5%, and 92% ± 2%, respectively. "

For mitral valve:

"Thirty-year freedom from reoperation, thromboembolism, valve thrombosis, bleeding, and endocarditis was 85% ± 5%, 55% ± 6%, 99% ± 1%, 57% ± 6%, and 95% ± 2%, respectively."

https://pubmed.ncbi.nlm.nih.gov/30342758/
 
This may not be exactly what you are looking for, but it is a 30 year follow up study on the St Jude mechanical valve. The bold is mine to emphasize your interest pertaining to reoperation.

For aortic valve:

"Thirty-year freedom from reoperation, thromboembolism, valve thrombosis, bleeding, and endocarditis was 92% ± 2%, 79% ± 3%, 96% ± 1%, 56% ± 5%, and 92% ± 2%, respectively. "

For mitral valve:

"Thirty-year freedom from reoperation, thromboembolism, valve thrombosis, bleeding, and endocarditis was 85% ± 5%, 55% ± 6%, 99% ± 1%, 57% ± 6%, and 95% ± 2%, respectively."

https://pubmed.ncbi.nlm.nih.gov/30342758/
Sure, not exactly as what I want is average time to reoperation, but very close. No great way to wag from this but if 92% are alive and not having been reoperated, that would be a great thing to tell patients, instead of "it will last a lifetime." " You have a 92% chance of it lasting at least 30 years, if you have any sense whatsoever and decent luck." I find that more to my liking, but that's just me.

The 25 year study showed 90% freedom from reoperation, I just noticed. Odd but might simply mean the average is being dragged down by early problems.
 
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The 25 year study showed 90% freedom from reoperation, I just noticed. Odd but
Not really, for instance development of an aneurysm, endocarditis, obstructive thrombosis from poor adherence to ACT, panus... These things aren't common, but neither is being a part of 8%

@Superman had his 2nd ohs triggered by that IIRC
 
Not really, for instance development of an aneurysm, endocarditis, obstructive thrombosis from poor adherence to ACT, panus... These things aren't common, but neither is being a part of 8%

@Superman had his 2nd ohs triggered by that IIRC
When I reread my comment I realized it was unclear. The odd part was that the 30 year study showed better results than the 25 year. But within the margin so its meaningless. And I meant that basically if we have the same results at 25 and 30 years of around 90%, than it appears that there is probably earlier trouble bring the average down. I think you know I am well aware of the problems that are occurring that have nothing to do with the valve itself wearing out, which is not a factor at all. And I'm certain we both realize that the valve never wearing out, doesn't mean no one has another surgery even if they are great with their anti thrombosis meds. 90% no re-surgery at 30 years is a spectacular result. I still feel like we need to know for the youngest folks, but probably fully grown, is it 40 years-45 years until re-surgery? Because done properly you want to place that valve in when you are reducing the odds of another surgery after 80. If the first surgery is mechanical and at age 15, there is likely another one at perhaps perfect timing at age 50-65. But would you want the valve placed at 40? We can get through two surgeries but do want the second one past age 80?
 
Hi
But within the margin so its meaningless. And I meant that basically if we have the same results at 25 and 30 years of around 90%,

well here's the thing, from my point of view. Studies are often done (like the LOWERING IT study by On-X which had a median duration of about the time of (but a little less than) the median time for an event. Choosing such minimises the amount of events you'll see compared to if you went (say) 50% longer.

So lets look at a study to express what I'm getting at better
1692822950992.png

so up front lets say that the average lifespan of an adult is about 80, so taking the study of people who were over 75 years old when they got their valve out to 10 years would make them at least 85. Not bad, but you'll notice two studies took it out longer pericardial (which btw is the sort of tissue valve that a Resilia is)and mechanical. For whatever reason you'll see that the Mechanical actually clearly differentiated itself over the Pericardial tissue valve once you went out that extra 5 years (or about 50%)).

Indeed from the same study, even at a younger age the results were this:
1692823192304.png

so If you look at 5 years (which is what Edwards did with their internal study which they cite on their promotional material) and then simply extend that line out to 10 or 15 years you see a different result depending how you do your extending. Probably what they do (which we don't know, because they don't tell us their methods)
1692823396310.png


This is why if you don't know how to read statistics you could conclude as does the old saying of the order of things is: "Lies, bloody lies, and statistics". (discussion and references on my blog here)

... If the first surgery is mechanical and at age 15, there is likely another one at perhaps perfect timing at age 50-65

the only that is even likely is if your reason for OHS was that you didn't have BAV (and thus a connective tissue disorder) and in that case you'd probably be one and done anyway. Such a case is still common in (ouh, say) India where the lack of proper use of antibiotics causes "strep throat" to progress into full blown Scarlet Fever, which then damages the valve surfaces and leads to eventual failure and replacement (ask @dick0236 about that).

Understanding the root cause of valvular disease is also important in determining likely outcomes in the future.

Best Wishes
 
No, I believe a tissue valve in someone super active won't last as long as in someone sedentary. I'm not sure if any studies prove that, but that's what my surgeon told me is the presumption when I chose a mechanical valve.
Kind of a bummer you get "penalized" for being more active in regards to a tissue valve
 
Good summary--thanks
Sure, not exactly as what I want is average time to reoperation, but very close. No great way to wag from this but if 92% are alive and not having been reoperated, that would be a great thing to tell patients, instead of "it will last a lifetime." " You have a 92% chance of it lasting at least 30 years, if you have any sense whatsoever and decent luck." I find that more to my liking, but that's just me.

The 25 year study showed 90% freedom from reoperation, I just noticed. Odd but might simply mean the average is being dragged down by early problems.
 
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