Aortic Valve Choices

[Chuck C]

which article?

He's referring to opinion piece that he linked on June 26, which argued that tissue valves are superior, even for young patients. The one that was completely anonymous and no disclosures, which, of course it would not have since it was anonymous. It is a little confusing, because sometimes he refers to it as a study, which it was not- merely an anonymous opinion piece with a few cherry picked citations.

 

[nobog]

I can tell you this for a fact, (after decades of testing heart valves) surgeon's are very good at the "parts of the body" and stitching things together - but they know very little of the intricacies of a tissue or mechanical valve. Listen closely but do your own due diligence.

 

[pellicle]

It is a little confusing, because sometimes he refers to it as a study, which it was not- merely an anonymous opinion piece with a few cherry picked citations.

thanks for clearing that up ... it just helps other readers to make their own decisions, as after all we are not all heart surgeons in here.

 

[Chuck C]

I can tell you this for a fact, (after decades of testing heart valves) surgeon's are very good at the "parts of the body" and stitching things together - but they know very little of the intricacies of a tissue or mechanical valve. Listen closely but do your own due diligence.

Indeed, do your own due diligence. Due diligence, among other things, can include the following:

-consulting with your cardiologist and your surgeon.
-seeking second or third opinions from other cardiologists and surgeons. It should not be a surprise that one can consult with 2 or 3 surgeons and receive 2 or 3 opinions.
-Reading published literature. Don't give all "articles" on the internet equal weight, but do your best to focus on the most well respected journals, which have the highest threshold for peer review. That is not to say don't read "opinion pieces", but best to know the difference between an opinion piece, a randomized trial, a meta-analysis and a review of the literature. I would take an anonymous opinion piece with a huge grain of salt.
- Seek wisdom from others who have experience facing the choices that you are facing. Someone like Dick0236, who has been taking warfarin for more than 50 years has a thing or two to say about taking warfarin. Someone like Vitdoc might have a few bits of wisdom to give in that he is a physician who has had multiple valve surgeries. Someone like Pellicle, who has degrees in engineering, been on warfarin for over a decade. has had 3 valve surgeries and manages to keep his INR in range something like 96% of the time, might have a thing or two worth listening to when it comes to INR management and valve selection.

Regardless of experience and background, we are all human and subject to our own biases, confirmation bias and otherwise. This is true of posters on this board, and it is important to know this is also true with respect to cardiologists and surgeons as well. If you doubt this, visit several cardiac surgeons and ask them to recommend what surgery method and valve choice would be best for you. You will get different answers. Be your own health advocate and wisely seek information from many sources.

 

[pellicle]

surgeon's are very good at the "parts of the body" and stitching things together

if all surgeons were perfect and well informed and unbiased then why would one ever need a second opinion?

In any case, to say I never suggest tissue as a viable option is incorrect.
https://www.valvereplacement.org/threads/aortic-valve-choices.887840/post-902075

Sometimes, we must kick the can, especially with underlying or additional medical issues where warfarin or similar drugs are contra indicated. Macular degeneration for example.

so these are factors to think about as well as the usual ones of "compliance" (failing to take your warfarin) and monitoring. I can certainly see why some surgeons just push people (who are undecided) towards a tissue prosthesis.

 

[Hyp2r]

I do agree with some of what Daniel758 is saying, for a few on this forum warfarin is no problem, these are probably very well organised people who maybe are happy keeping records etc. but for what I think would be the majority, taking warfarin can be a problem. I know it certainly was for me when taking it for a seperate issue.

There appears to be a few mechanical valve fanboys on this forum who are quite outspoken. I did have my doubts after my surgeons strongly recommended bovine tissue valves over my perhaps preferred option of mechanical. I now realise that the correct decisions were made by the surgeons.
Be sure to listen to both sides and the advantages and disadvantages of both options.

 

[cldlhd]

Well it looks like this article has stirred up quite a few people. This was not my intention but it was no doubt my result.

First, I want to say I have vey much enjoyed this forum, the people posting their experiences are great and the information shared is valuable.

That said, I'd like to share a story...

I have family members that are members of a very conservative fundamentalist Christian church. Very good people who truly believe in their churches' teachings.

One day at a cookout, a couple of them began discussing how "liberalism" was destroying America and leading to the destruction of America's children.

Their example was that in San Francisco, the bastion of Liberalism in America, there's a law that allows people to ride the city busses naked.

And what could be more traumatizing and moral decaying to America's children than seeing someone riding the bus naked, right?

I couldn't think of anything.

I was a little taken aback by this, though, so I questioned the existence of this "Law".

Their response: Everyone knows this is true. One relative turned to the other, both shaking their heads and confirming that everyone in their church knows this. It's been talked about many, many times. In fact, it's common knowledge everywhere, except the "Main Stream Media", and to prove it, I could just go to San Francisco myself and ride the bus and I would indeed see naked people.

They were so confident in their answers that I actually googled this to find out if somehow this could possibly be true.

It wasn't.

Now back to this forum...

I'm sure the following will probably stir up a lot more people but it seems this forum is beginning to have an echo chamber vibe that will eventually stifle an otherwise good, supportive place to discuss heart valve issues and lead to disinformation that could harm people.

And I don't think it's intentional. I think it just happens when a few people discuss over and over their beliefs. The beliefs then become solidified and unquestionable.

I see time after time people telling others that "no valve choice is the wrong choice" and then ithey mmediately proceed to tell them why their choice is/was wrong. I'm not sure they realize what they are doing this but this is what I see happening.

I've also seen many postings that question cardiologist's motives by saying cardiologist's are probably taking money from valve makers when they recommend someone choose a valve the poster doesn't agree is best.

These same cardiologists that have dedicated their lives to saving our lives are now not to be trusted because they are obviously on the take for a few dollars if they recommend something other than what the poster "knows" to be best? To me this is a huge turn off.

The reality of this is that people who have the drive, intelligence and the skill to become world class heart surgeons are surely talented enough to go into any field they want and make as much money as the wish. I just don't believe it's about the money with them.

And before anyone says, "Yeah, but a study showed a cardiologist was on the take once", yeah, probably, but overall I'd bet 99.9% of world class heart surgeons are not "on the take" and I'll take my chances with their experience and knowledge over any internet forum poster.

One poster here questioned who my heart surgeon was how he could recommended my specific Inspiris Resillia valve, here's the link to his bio:

https://providers.keckmedicine.org/provider/Vaughn+A.+Starnes/205280
Point being that I think it's obvious that these surgeons/people, who we have placed our lives in their hands and they gave us many more good years of life than we would have ever had without them, are much more qualified and much more knowledgable than anyone posting on an internet forum.

I think it's actually dangerous for new people coming to this forum when making their decisions to be told to disregard the opinions of people like the above Dr. Starnes and be sidetracked by internet researchers or forum posters telling readers they know more than their Drs.

Now, if people are still open to hear the "other side" after reading the above, I believe the article I posted has value in many ways:

1. Many posters on this forum are often perplexed about why their cardiologist recommended a biological valve over a mechanical.

Read the article, maybe this is why?

Maybe trust your cardiologist or surgeon knows more than an internet poster?

2. If the statistics show only 45% of people receiving a biological valve at 50 and 25% at 60 will ever end up having a re-operation for another valve or that less than 20% of people under age 70 who receive a biological valve will have a redo within 15 years, then that's just what the numbers say.

Will you fall somewhere close to these figures? Probably.

Will you be an outlier? Probably not, but who knows. **** is living proof it can happen and everyone wants to be **** and go 50 years. I know I do.

Will I be as lucky and seriously as tough as ****? Hopefully, but probably not. It's just reality.

People also go to Las Vegas by the millions all planning to win big. Do they end up winning big? Yeah some do, but the vast majority don't.

3. If warfarin is no big deal, there would not be literally thousands of posts here and hundreds of thousands of posts all over the internet trying to help people figure it out. Enough said.

If you're en engineer or someone with the mindset of one, great, it probably is no big deal at all.

For the average person, judging by the sheer number of postings, it does seem to be a big deal.

And there are many more "average" people than engineers. There just are.

4. As far as quality of life issues, I'll give an example from my own experience:

A month or so after I had my valve replacement, my wife of 35 years placed her head on my chest in bed for the first time since the surgery and then pulled away a few minutes later. When I asked her what was the matter, she said, "It doesn't sound like you". That bothered both me and her. It's real.

Luckily, it has since quieted down but I don't know how it would have affected both of us if there was a constant and even more "foreign" ticking sound 24 hours a day.

If it doesn't bother you or yours, great, but it may bother others. Again, reality.

5. Another thing that stuck out to me in this article that I think is very valuable to know in making your valve choice is the claim that the average quality of after surgery health with mechanical valves is "Fair" and with biological valves is "Good".

I know posters will tear into the article"s claim with "peer review" questions, how the study was set up, etc., etc. and how the claim is not true because they can climb mountains, etc. (which I have no doubt is true, I just question how typical that is for the average replacement valver)

NOW HERE'S WHY IT'S IMPORTANT:

If cardiologists and actual heart valve researchers are correct, I think that knowing the difference in quality of health after surgery is very important information to know when deciding and weighing tradeoffs between both valve types.

Let's say the cardiologists and researchers actually do know what they are talking about and you get 15 years out of a biological valve and "good" health before a replacement re-operation.

Let's also disregard the 10% re-operation rate on mechanical valves and say a mechanical valve will give you "fair" health and will never wear out.

Now you're basically weighing 30 years +- of "good" health plus one more high success rate operation against an undetermined number of years of "fair" health plus daily warfarin, etc. and no more operations.

Maybe not so cut and dry when you look at it like this?

Was this valuable information in a heart valve forum?

(Note also that if you choose the Inspiris Resillia, it's supposed to last longer (but who knows for sure yet) and it's made to accept a TAVR valve in valve that would probably give you another 8-10 years. Depending on my health at the time and whether or not a material like the FOLDEX is available, I would probably go new valve in 15 years and then do a TAVR later as TAVR seems to reduce capacity. That would bring me up to potentially 40 years with "good" health, and one additional operation.}

Quality of health for me was/is a huge issue. I do know that I was ready for some "good", worry free health when my time came after a number of years of tough sledding and I'm very thankful for it. It has changed my life tremendously.

I also think of posters like Paleowoman and her problems with a mismatched valve and her resulting "poor" health she's had to endure for many years. I think she would probably be very interested in and eager for a chance at as many years of "good" health as she could possibly get.

So moral of the story, which option is best?

Individuals need to choose for themselves but it's not as cut and dried as many here make it out/are convinced it to be. Both are valid options.

I also see a danger in this forum becoming an echo chamber and new people coming here for information and answers only to be told that their cardiologists and surgeons are not to be trusted and that warfarin will not be problem for them when it may be.

SO TO THE NEW PEOPLE READING THIS FORUM: The posters on this forum, while well-meaning and knowledgable, are not cardiologists or surgeons. Your decision is life altering, please listen to your cardiologists and surgeons when they tell you something and take these posters advice and experience for what it is, advice and experience from well meaning people, not cardiologists and surgeons.

Not getting into all of it but I agree to an extent. If you're 60 and ride a bike, walk daily (or almost) and are in great shape for your age you might be more likely to outlast a tissue valve than if you're 400lbs and smoke 2 packs a day.

 

[vitdoc]

I'm sure the following will probably stir up a lot more people but it seems this forum is beginning to have an echo chamber vibe that will eventually stifle an otherwise good, supportive place to discuss heart valve issues and lead to disinformation that could harm people.

I don't think that this forum has become an echo chamber. The problem with the article is that it is crap. Crap in the sense that the data was flawed. As I mentioned I doubt the life expectancy of valve patients at 60 is 12 years. So the conclusions of the article are flawed. People are upset not with the conclusions but with the methodology in an article that is supposed to be from a unbiased source.

Recently a article came out that suggested that the rate of death associated with vaccination was on par with the Covid rate of death.
https://science.sciencemag.org/content/373/6551/147The authors in this supposed peer reviewed journal also cherry picked statistics to make their case.

I think there are honest discussions about various valve choices. If there was a clear and obvious winner in the valve arena everyone would pick that choice.
Surgeons are motivated by their own experiences, biases and information from reputable sources and from manufacturers. Also surgeons often don't see most of their patients after the surgery is over. The patients are followed by cardiologists. The surgeons see re-ops and complications but not patients who are doing well. This can bias their personal views.
So we can argue about mechanical valves (and which mechanical valves) , tissue valves, Ross procedures, David procedures etc. etc.. But we should demand good studies not crap.

 

[user 15848]

Well it looks like this article has stirred up quite a few people. This was not my intention but it was no doubt my result.
SO TO THE NEW PEOPLE READING THIS FORUM: The posters on this forum, while well-meaning and knowledgable, are not cardiologists or surgeons. Your decision is life altering, please listen to your cardiologists and surgeons when they tell you something and take these posters advice and experience for what it is, advice and experience from well meaning people, not cardiologists and surgeons.
[/QUOTE}

Are you a cardiologist ?, since you speak so highly of them, either you are, or you dont know much about what it takes to be one,

 

[Chuck C]

They were so confident in their answers that I actually googled this to find out if somehow this could possibly be true.

It wasn't.

Hi Daniel.
First of all, I want to say that although I have some different opinions than you do, I'm glad that you're here and I think it is healthy for us to have these discussions, even if sometimes it seems that the disagreements are significant.

You have put a lot out there that I feel should be rebutted, and I'm not sure I will be able to get to it all, but I wanted to address a few points.

I did want to point out what I see as irony in you using that personal story to segue into your points. I like your story. It is a great example of how people pass along information as if it is true, without ever investigating to determine if it is true. Naked people on SF buses- nonsense and good for you for investigating it for yourself.

I find this prelude a little ironic, because you then go on to present some of the misconceptions and myths about warfarin and warfarin management, as reasons that folks should instead consider a tissue valve. Like you looking into the misinformation your family was spreading about naked people in SF, I looked into these anti-coagulation claims and found that most of them were either complete myth or totally exaggerated. So, some irony there for you to use this story.

Another point that I would like to address:

I know posters will tear into the article"s claim with "peer review" questions, how the study was set up, etc.,

You refer to the article as a study. It was not a study. It is an opinion piece by an anonymous author. This presents some significant issues:
-It begs the question as to why he would be anonymous
-It is titled "Expert Analysis". How are we to evaluate whether this author is truly an expert if he is anonymous? Take his word for it?
-If the author is anonymous, how can we read their previous opinions and publications and determine if they have conflicts of interest? It does not disclose conflicts of interest. Perhaps he is a tissue valve manufacturer CEO? We really have no idea.
-It is not a published study, and not peer reviewed, yet you seem to give it an awful lot of weight. An anonymous opinion on the internet with a few citations is just that. This does not mean that it is worthless, but let's not call it a study and pretend that it has gone through the gauntlet of peer review.

You caution the reader about putting too much weight on random individuals on the internet sharing their opinions and go on to caution readers about posters on this forum:

when they tell you something and take these posters advice and experience for what it is,

And yet, your entire argument is centered around the points made by..........a random anonymous person on the internet. He makes a few citations to support his point- no different than many of the opinions expressed on this forum, which many times have citations to support their points. Yes, be skeptical of all opinions posted- that is what individuals approaching data scientifically should do. This is what those doing their due diligence should do.

Many of us have brought up legitimate flaws and limitations in the anonymous opinion piece which you seem to give some much weight to, most of which you have not addressed. From your response you seem to have taken the criticisms of your linked opinion piece personally. Please don't. Besides the huge red flag presented by the anonymity of the author, there were enormous flaws in his logic. If we are being scientifically diligent, we should discuss these problems.

To be clear I am not anti-tissue valve and I know of no poster here who is anti-tissue valve. A 66 year old friend had the Edwards Inspiris valve put in 11 days ago, the same valve you chose. I did not try to talk him out of his decision, and, in fact, I told him that if I was 66, that is the valve that I would have gone with.

I also find it interesting that you seem to be taking the position that this forum, what you say is now an "echo chamber", presumably anti-tissue valve, is somehow giving advice that runs contrary to what cardiologists and surgeons are saying.

The posters on this forum, while well-meaning and knowledgable, are not cardiologists or surgeons

Let's say the cardiologists and researchers actually do know what they are talking about

I believe you have missed the mark considerably with this sentiment.

What you're seeing, is the response to an article which claims that tissue valves are superior, even for young patients, which is stated in the very title. What some folks on this forum take issue with, me included, is when individuals post strong opinions that people should get tissue valves well outside of the medical guidelines.

The guidelines of most governing medical bodies are approximately as follows. While acknowledging that there are exceptions:

Over 70 years old: Tissue valve is a reasonable choice.
60-70 years old: Either tissue or mechanical are reasonable choices
Under 60 years old: Mechanical valve is the reasonable choice.

And, do you know who makes up the boards that come up with the guidelines? Cardiologists, surgeons and researchers- lots of them- committees of them. The guidelines are supposed to be evidence based, not opinion or emotion based, and often cite hundreds of publications in their determinations.

So, far from your suggestion, that many here are going against what cardiologists and surgeons are saying, if we are pointing folks towards the guidelines, we are supporting what cardiologists and surgeons are saying. An individual surgeon may suggest that a patient get a valve significantly outside of the guidelines. He may have very good reason or perhaps not. When such suggestions are made, questions should be asked and there should be good answers- not answers based on myth and emotions.

The point being, always ask questions and seek more than one source of information and use critical analysis when evaluating information. Question the source, as in your naked SF story, but question the information, regardless of the source and stay diligent always.

And to be clear, I am not saying you made a bad decision. Heck, I don’t even know your age and circumstances. But, even if I did, I would not second guess your decision, but only wish you well, as I do. I truly hope your valve lasts 30+ years. As Superman often says, you make the choice that lets you sleep at night. Having made your decision, don’t look back. But, advocating that young folks facing valve choice right now should choose a tissue valve, and linking an opinion piece with such advocacy, well, that’s going to generate some discussion. Maybe even some push back.

 

[dick0236]

NOW HERE'S WHY IT'S IMPORTANT:

If cardiologists and actual heart valve researchers are correct, I think that knowing the difference in quality of health after surgery is very important information to know when deciding and weighing tradeoffs between both valve types.

Let's say the cardiologists and researchers actually do know what they are talking about and you get 15 years out of a biological valve and "good" health before a replacement re-operation.

Let's also disregard the 10% re-operation rate on mechanical valves and say a mechanical valve will give you "fair" health and will never wear out.

Now you're basically weighing 30 years +- of "good" health plus one more high success rate operation against an undetermined number of years of "fair" health plus daily warfarin, etc. and no more operations.

Maybe not so cut and dry when you look at it like this?

Was this valuable information in a heart valve forum?

Dan, I would assume that you have the new Inspirous(?) tissue valve that was developed by Edwards Lifesciences, am I correct? I also have an Edwards Lifesciences valve (the valve that built the Edwards Company). In about a month my valve will be 54 years old and there is no way in hell that your tissue valve will even get close to that age. You brought me into your post as an "outlier" in trying to justify my living so long with my mechanical valve. There have actually been many well over 40 years who have, and continue to live, with mechanical valves............but none with tissue valves have reached those milestones.

With regard to the "quality of life" issue........my quality of life has always been very good, and now at 85+years, it is better than my neighbors and/or friends (altho most of my friends have died). As a matter of fact I just came in from the gym, where I still work out a few times each week.

I also take issue with your comments about warfarin. Warfarin is a widely used anticoagulant that is used to manage many conditions.......many, if not most, of the users are elderly and prone to disregard instruction....or so my doctors tell me. Warfarin, for the young, should be about as difficult to take as many other Rx. I get tickled when I read a young person complain they don't like taking pills........wait "till you get my age and take a "handfull" and only one is warfarin.

Looking back, If oI was young again I'd for sure get a mechanical valve again!!

 

[Chuck C]

Well said ****

 

[pellicle]

Hi

With regard to the "quality of life" issue........my quality of life has always been very good, and now at 85+years, it is better than my neighbors and/or friends (altho most of my friends have died). As a matter of fact I just came in from the gym, where I still work out a few times each week.

I also take issue with your comments about warfarin. Warfarin is a widely used anticoagulant that is used to manage many conditions.......many, if not most, of the users are elderly and prone to disregard instruction....or so my doctors tell me. Warfarin, for the young, should be about as difficult to take as many other Rx. I get tickled when I read a young person complain they don't like taking pills........wait "till you get my age and take a "handfull" and only one is warfarin.

Looking back, If oI was young again I'd for sure get a mechanical valve again!!

just thought I'd use this to add two things

1) compared to when you started warfarin things are even easier with respect to measuring and knowing your INR. Gone are the days when you must be tied to a clinic. I for example am free to move where ever I want and travel as I wish (pre COVID that is) and maintain management. Just like a diabetic does.

2) you need to edit your end quote tag. Currently it has { where it needs to be [/
hope that makes sense

 

[pellicle]

Chuck, at the risk of being an echo chamber I wanted to restate this and provide emphasis:

The guidelines of most governing medical bodies are approximately as follows. While acknowledging that there are exceptions:

Over 70 years old: Tissue valve is a reasonable choice.
60-70 years old: Either tissue or mechanical are reasonable choices
Under 60 years old: Mechanical valve is the reasonable choice.

of course acknowledging that there are exceptions such as

• women of child bearing age
• people with known bleeding complications (diverticulitius comes to mind)
• macular degeneration
• unwillingness to comply with AC Therapy
• legitimate concern of a requirement for a redo surgery in the next 18 years
• preference for not having it done (and accepting redo-operations as a consequence)

From
Guidelines on the management of valvular heart
disease (version 2012)
The Joint Task Force on the Management of Valvular Heart Disease
of the European Society of Cardiology (ESC) and the European
Association for Cardio-Thoracic Surgery (EACTS

p31

These guys include cardiologists and the top of the top surgeons ...
Chuck n me in our Echo Chamber

 

[Chuck C]

of course acknowledging that there are exceptions such as

• women of child bearing age
• people with known bleeding complications (diverticulitius comes to mind)
• macular degeneration
• unwillingness to comply with AC Therapy
• legitimate concern of a requirement for a redo surgery in the next 18 years
• preference for not having it done (and accepting redo-operations as a consequence)

Yes, indeed those are the major exceptions to the guidelines. But, what the heck do we know. After all, we are not cardiologists nor surgeons. And, while we're at it, what could you possibly know about INR management? After all, you are not a Coumadin Clinic physician!

 

[pellicle]

And, while we're at it, what could you possibly know about INR management?

What could any of us know?

 

[Chuck C]

What could any of us know?

After all, we are just random people on the internet talking into an echo chamber.

 

[hevishot]

They need to change the name this website to "Mechanicalvalvereplacement.org. Because there is nothing unbiased about this site at all.

 

[Chuck C]

They need to change the name this website to "Mechanicalvalvereplacement.org. Because there is nothing unbiased about this site at all.

We were actually thinking echochamber.org would be a lot more catchy.

BTW, welcome back from the senior world weight lifting championships. How did you do?

 

[nobog]

They need to change the name this website to "Mechanicalvalvereplacement.org. Because there is nothing unbiased about this site at all.

Wow - what a sad (untrue) statement .....