New BAV + ARR candidate

[Sem50]

Hi. I have been lurking here for the past few days soaking all the information in.

53 y old male. In very good health and pretty much asymptomatic. I have a BAV and an aneurysm that has been monitored for over a decade. It’s at 4.8cm now and the surgeons are recommending surgery. Not because it is an emergency but because they feel with my age, height and BAV it is better to get taken care of.

I have consulted two surgeons. Both are very well qualified. Both are recommending replacing the valve as well when they go to fix the aneurysm since they feel it is inevitable and don’t want me to go through another OHS soon even though the valve is ok and regurgitation is mild.

One has given me an option for an Inspiris valve and saying I will be eligible for a valve in valve replacement when it fails 15 to 20 years from now. The other is strongly recommending a Ross procedure in addition to the ARR. Both seemed to direct me away from the mechanical valve option though they did say it was my choice.

However reading these forums I am now convinced not to do the Ross procedure even if I didn’t have the ARR, let alone with the ARR operation also taking place at the same time.

I would prefer not being on blood thinners as I have had ulcers before and also get migraines with auras which by itself puts me in a higher stroke susceptible category. The mech valve will be the ON-X.

Are there folks here with mech valves and ulcer or migraines in their background? I would like to hear from you plus others on the options in front of me. Thanks.

 

[Chuck C]

Welcome to the forum.

One has given me an option for an Inspiris valve and saying I will be eligible for a valve in valve replacement when it fails 15 to 20 years from now.

It is important to understand that no one, regardless of how qualified they are, can accurately tell you that you "will be eligible" for a TAVI procedure in the future. TAVI (aka TAVR), requires evaluation and there are many variables that come into play to determine whether a person is a candidate. This evaluation happens down the road, when it is time for the second procedure, not at the time of the first procedure, unless of course one is considering TAVI for their first procedure.

TAVI procedures are usually completed by interventional cardiologists. They also do the evaluations, via echo and/or CT scan, which determine if a patient is eligible. It might be a good idea to get a consult with an interventional cardiologist, who does theses evaluations, so that you can discuss the likelihood that you will be eligible down road. To be clear, he won't be able to tell you that you will or will not be eligible in the future, but it might be interesting to underdand the % of patients who are eligible for valve in valve, based on his experience. Even though I did not have much interest in a TAVI, due to my young age, my cardiologist referred me to be evaluated, just so that we had the option on the table. It was determined that I was not eligible. This was an evaluation of my native valve, not a bioprosthetic valve- but in both situations, evaluation is needed before eligibility can be determined.

The other is strongly recommending a Ross procedure

I'm glad to hear that you have read up on this. The Ross is controversial and there are some big downsides. I think that if a surgeon was "strongly" recommending an outlier procedure, which is not recommended by the evidence-based guidelines, that it would be a bit of a red flag for me. At the very least I would seek a second opinion, and I see that you have done just that. It is always a good idea to get at least two surgical opinions, because opinions vary significantly, even among the experts. The fact that one surgeon strongly recommended the Ross and one recommended the Inpiris Resilia valve, underscores my point.

I would prefer not being on blood thinners as I have had ulcers before and also get migraines with auras which by itself puts me in a higher stroke susceptible category.

I was your age when I had my aortic valve and ascending aorta replaced. I decided to go with a mechanical valve, as I did not want another procedure down the road. However, I don't have a history of ulcers, nor do I get migraines with auras, so I can't speak to how that is factored into the decision. I went back and forth on whether to go with a tissue valve or a mechanical valve. It is not an easy decision, for good reason. If I went tissue, it was going to be the Inspiris Resilia. This valve has a treatment which may cause it to last a little longer than previous tissue valves before SVD starts, although this has not been proven on humans yet, only an 8 month trial on juvenile sheep. Also, in my view the guidance to expect the valve to last 15 to 20 years might be optimistic for your age. For someone who is 65+, I think that would be accurate, but folks in their 40s and 50s, on average, go through tissue valves significantly faster than folks 65+. When I was leaning towards the Inpiris Resilia, at age 53, I had consults with the head of surgery at Cedar Sinai and also UCLA and was told by both that, given my age, to expect about 10 years. If the Resilia lives up the marketing hope, it is certainly possible for it to last 15 to 20 years for younger patients (yes, you are a younger patient), but there is no evidence for it to last that long at this point. This forum has scores of members who were given promises of tissue valves lasting 15+ years, despite their young age, only to be upset that to learn after 8 to 12 years that they needed replacement. Many of these members were also told they could get TAVI on round 2, only to learn that they are not eligible. I say these things not to discourage you, but just to go in with open eyes. I would encourage you to be prepared for the reality that it might not last as long as you hope and it is somewhat of a coin toss as to whether you will be a TAVI candidate.

Hopefully, some members can contribute who have similar issues as you do, with respect to the ulcers and migraines, and how that factored into their decision.

It is not an easy choice, and pre-existing medical conditions do factor in to the equation.

Best of luck!

 

[Sem50]

Welcome to the forum.


It is important to understand that no one, regardless of how qualified they are, can accurately tell you that you "will be eligible" for a TAVI procedure in the future. TAVI (aka TAVR), requires evaluation and there are many variables that come into play to determine whether a person is a candidate. This evaluation happens down the road, when it is time for the second procedure, not at the time of the first procedure, unless of course one is considering TAVI for their first procedure.

TAVI procedures are usually completed by interventional cardiologists. These specialists complete the procedures. They also do the evaluations, via echo and/or CT scan, which determine if a patient is eligible. It might be a good idea to get a consult with an interventional cardiologist, who does theses evaluations, so that you can discuss the likelihood that you will be eligible down road. To be clear, he won't be able to tell you that you will or will not be eligible in the future, but it might be interesting to underdand the % of patients who are eligible for valve in valve, based on his experience. Even though I did not have much interest in a TAVI, due to my young age, my cardiologist referred me to be evaluated, just so that we had the option on the table. It was determined that I was not eligible. This was an evaluation of my native valve, not a bioprosthetic valve- but in both situations, evaluation is needed before eligibility can be determined. It was determined that I was not eligible for TAVI.


I'm glad to hear that you have read up on this. The Ross is controversial and there are some big downsides. I think that if a surgeon was "strongly" recommending an outlier procedure, which is not recommended by the evidence-based guidelines, that it would be a bit of a red flag for me. At the very least I would seek a second opinion, and I see that you have done just that. It is always a good idea to get at least two surgical opinions, because opinions vary significantly, even among the experts. The fact that one surgeon strongly recommended the Ross and one recommended the Inpiris Resilia valve, underscores my point.


I was your age when I had my aortic valve and ascending aorta replaced. I decided to go with a mechanical valve, as I did not want another procedure down the road. However, I don't have a history of ulcers, nor do I get migraines with auras, so I can't speak to how that is factored into the decision. I went back and forth on whether to go with a tissue valve or a mechanical valve. It is not an easy decision, for good reason. If I went tissue, it was going to be the Inspiris Resilia. This valve has a treatment which may cause it to last a little longer than previous tissue valves before SVD starts, although this has not been proven on humans yet, only an 8 month trial on juvenile sheep. Also, in my view the guidance to expect the valve to last 15 to 20 years might be optimistic for your age. For someone who is 65+, I think that would be accurate, but folks in their 40s and 50s, on average, go through tissue valves significantly faster than folks 65+. When I was leaning towards the Inpiris Resilia, at age 53, I had consults with the head of surgery at Cedar Sinai and also UCLA and was told by both that, given my age, to expect about 10 years. If the Resilia lives up the marketing hope, it is certainly possible for it to last 15 to 20 years for younger patients (yes, you are a younger patient), but there is no evidence for it to last that long at this point. This forum has scores of members who were given promises of tissue valves lasting 15+ years, despite their young age, only to be upset that to learn after 8 to 12 years that they needed replacement. Many of these members were also told they could get TAVI on round 2, only to learn that they are not eligible. I say these things not to discourage you, but just to go in with open eyes. Historically, I would encourage you to be prepared for the reality that it might not last as long as you hope and it is somewhat of a coin toss as to whether you will be a TAVI candidate.

Hopefully, some members can contribute who have similar issues as you do, with respect to the ulcers and migraines, and how that factored into their decision.

It is not an easy choice, and pre-existing medical conditions do factor in to the equation.

Best of luck!

Thank you for your detailed reply.

 

[pellicle]

Hi and welcome to the forum

Hi. I have been lurking here for the past few days soaking all the information in.

that's really good phrasing and your entire post seems clear from a sense of panic and anxiety (not that I'm saying you don't have any) which is important for keeping a clear head (which you need in order to make an informed decision).

53 y old male. In very good health and pretty much asymptomatic.

that's a good position to be in for a number of reasons, not least of which are:

• you are not needing to get 40 years out of your valve choice
• one can't read and dispassionately make a choice when you are under duress.

I have a BAV and an aneurysm that has been monitored for over a decade. It’s at 4.8cm now and the surgeons are recommending surgery. Not because it is an emergency but because they feel with my age, height and BAV it is better to get taken care of.

I'd agree. When I had my 3rd OHS at 48yo I was in the same sort of position (although my aneurysm was somewhat larger and more pressing with a mid fifties in mm). To me this was good because I did not go into any enlargement or hypertrophy.

Its also good because more and more we are discovering that "delaying surgery" until the risk of death from the valve dysfunction is higher than the risk of death from surgery is a bad idea which belongs in the dust bin of the previous century (when in the 1970's this was indeed a risky and unknown surgery. Now its made it to the top shelf of the most successful complex interventions in the surgical repertoire.

If you haven't read my posts (or my bio) then you should know I've been in this since I was younger than 10 and its formed part of my thinking and awareness my entire life.

Something you should write on a post it note and keep on the edge of your monitor is: life after surgery just goes on.

However how it goes on is up to you and what you decide.

I have consulted two surgeons. Both are very well qualified. Both are recommending replacing the valve as well when they go to fix the aneurysm since they feel it is inevitable and don’t want me to go through another OHS soon even though the valve is ok and regurgitation is mild.

and of course both are also recommending something different. First I'm going to say please get a beverage and a notepad and go back and write down Chucks points (SVD, well regarded demonstrably long life tissue, concern of the Ross) at the top of your page and then through all this excellent presentation (which was harvested from the Mayo site some 10 years back).



Next I want to mention scar tissue; my experience is that people have less than no idea what this is and what it means. I say less than no idea because what they think they know is often wrong. This is my chest and my scar collection, but there is a further point which I'll make when you've viewed this image

careful examination of the drain hole sites will reveal that there are multiple incisions from different surgeries in the more or less (but not exactly) the same place.

This is because scar tissue is not just a surface phenomenon but a deeper tissue phenomenon that manifests all the way through the wound channel.

That means that tissue where the scar is no longer seperates well. Like pulling the skin of a chicken, is easy because there is a boundary of different tissue between the place that the organ of the skin ends and the organ of the muscle begins. Scar tissue removes this boundary and its now kind of glued together (often called adhesions for weird reasons).

Any hunter or person who's involved with "meat processing" knows this when skinning or "cleaning" (removing the unwanted organs) an animal.

This is non trivial in redo surgery.

This is the main reason why in redo surgery you end up with "whoopsies" ... oh, nurse, call the electrocardiologist this guy's going to need a pacemaker now (because the AV node was severed by the surgeon who didn't see it because it was bound up in a bunch of scar tissue.

This is why pre-redo surgery we do a lot more medical imaging and planning pre surgery to reduce surprises. This is because we have done this now so many times (redo surgery) that its a part of cardio-thoracic surgery

I know this because I've had 2 redo surgeries.

Let me be clear here: do not plan for multiple surgeries (as Dr Schaff says, run don't walk away from advice that redo is ok and its better post surgical management practice).

Lets look at the 3 options that I see and couch them in terms of the guidelines (and again I refer you to Dr Schaff's comments).

1. a Bentall graft pre attached to a bio-prosthesis
2. a Bentall graft pre attached to a mechanical prosthesis
3. a full sewing circle (very challenging and time consuming surgery probably personally rewarding for the Ross advocate surgeon) hand stitched graft and two valve surgeries Ross and Bentall procedure.

Let me point out before anything else that time on the cross clamp (the pump) is a key indicator of post surgical recovery. The shorter the better. I literally can't see how point #3 brings shorter times to the table.

Eg from this journal source
https://www.sciencedirect.com/science/article/pii/S1743919110004619

By using XCL time as a continuous variable, an incremental increase of 1 min interval in XCL time was associated with a 2% increase in mortality in both groups.​

So here's were I'll also day "only use peer reviewed journals" and good key word searching when doing your "learning" in the process of informing yourself. Remember you are not doing research, you are doing literature review:

https://cjeastwd.blogspot.com/2021/07/done-my-research.html
Not everyone has been through the process of formalised literature review to inform themselves about (bone up on) a topic, so let me offer a little guidance on that and then a practical example of critical thinking and analysis. Monash Uni has a good page aimed at grads undertaking research degrees

https://www.monash.edu/student-acad...g/critical-thinking/what-is-critical-thinking
Its a good starter (take the time, it'll save you time in the long run). They propose

1. clarify your thinking purpose and context
2. question your sources of information
3. identify arguments
4. analyse sources and arguments
5. evaluate the arguments of others and
6. create or synthesise your own arguments.

point 6 is where you start making your own "judgements" on what the diverse (you've had two opinions pointing in different directions already right?) views you've encountered mean and how they apply to you and your needs.

Then this little essay is what I'd do when reading a journal article (or an opinion piece as I identify this as being what I'm reviewing is)

My advice is that at your age the only two good solid conservative choices are bio-prosthesis and mechanical. I would pick either conservatively. I would not suggest the On-X because of the simple observations that:

1. it brings nothing proven to the table that St Jude or others offer
2. its promoted and advertised on a subject of emotional angst for which there really is no actual problem to be solved (fear of warfarin and the puny reduction it offers)
3. its actual physical claims are not backed up by evidence (doesn't bod well for its unsupportable claims)

Two threads worth reviewing

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
and

https://www.valvereplacement.org/th...-to-outdated-one-like-st-jude-and-ats.887854/
Lastly let me say that on the side of a mechanical prosthesis the only issue you have is anticoagulation management, this is actually a lot simpler today (with wide acceptance of Point of Care machines like the Coaguchek) and so just as diabetic treatment and outlook has improved leaps and bounds with no other new feature than personal blood glucose monitors the same is true with anticoagulation management in mechanical valves. Again, I refer to comments made by Dr Schaff in his "your valve my valve" part of his presentation.

Best Wishes

 

[Sem50]

Hi and welcome to the forum

that's really good phrasing and your entire post seems clear from a sense of panic and anxiety (not that I'm saying you don't have any) which is important for keeping a clear head (which you need in order to make an informed decision).


that's a good position to be in for a number of reasons, not least of which are:

• you are not needing to get 40 years out of your valve choice
• one can't read and dispassionately make a choice when you are under duress.

I'd agree. When I had my 3rd OHS at 48yo I was in the same sort of position (although my aneurysm was somewhat larger and more pressing with a mid fifties in mm). To me this was good because I did not go into any enlargement or hypertrophy.

Its also good because more and more we are discovering that "delaying surgery" until the risk of death from the valve dysfunction is higher than the risk of death from surgery is a bad idea which belongs in the dust bin of the previous century (when in the 1970's this was indeed a risky and unknown surgery. Now its made it to the top shelf of the most successful complex interventions in the surgical repertoire.

If you haven't read my posts (or my bio) then you should know I've been in this since I was younger than 10 and its formed part of my thinking and awareness my entire life.

Something you should write on a post it note and keep on the edge of your monitor is: life after surgery just goes on.

However how it goes on is up to you and what you decide.



and of course both are also recommending something different. First I'm going to say please get a beverage and a notepad and go back and write down Chucks points (SVD, well regarded demonstrably long life tissue, concern of the Ross) at the top of your page and then through all this excellent presentation (which was harvested from the Mayo site some 10 years back).



Next I want to mention scar tissue; my experience is that people have less than no idea what this is and what it means. I say less than no idea because what they think they know is often wrong. This is my chest and my scar collection, but there is a further point which I'll make when you've viewed this image
View attachment 889640

careful examination of the drain hole sites will reveal that there are multiple incisions from different surgeries in the more or less (but not exactly) the same place.

This is because scar tissue is not just a surface phenomenon but a deeper tissue phenomenon that manifests all the way through the wound channel.

That means that tissue where the scar is no longer seperates well. Like pulling the skin of a chicken, is easy because there is a boundary of different tissue between the place that the organ of the skin ends and the organ of the muscle begins. Scar tissue removes this boundary and its now kind of glued together (often called adhesions for weird reasons).

Any hunter or person who's involved with "meat processing" knows this when skinning or "cleaning" (removing the unwanted organs) an animal.

This is non trivial in redo surgery.

This is the main reason why in redo surgery you end up with "whoopsies" ... oh, nurse, call the electrocardiologist this guy's going to need a pacemaker now (because the AV node was severed by the surgeon who didn't see it because it was bound up in a bunch of scar tissue.

This is why pre-redo surgery we do a lot more medical imaging and planning pre surgery to reduce surprises. This is because we have done this now so many times (redo surgery) that its a part of cardio-thoracic surgery

I know this because I've had 2 redo surgeries.

Let me be clear here: do not plan for multiple surgeries (as Dr Schaff says, run don't walk away from advice that redo is ok and its better post surgical management practice).

Lets look at the 3 options that I see and couch them in terms of the guidelines (and again I refer you to Dr Schaff's comments).

1. a Bentall graft pre attached to a bio-prosthesis
2. a Bentall graft pre attached to a mechanical prosthesis
3. a full sewing circle (very challenging and time consuming surgery probably personally rewarding for the Ross advocate surgeon) hand stitched graft and two valve surgeries Ross and Bentall procedure.

Let me point out before anything else that time on the cross clamp (the pump) is a key indicator of post surgical recovery. The shorter the better. I literally can't see how point #3 brings shorter times to the table.

Eg from this journal source
https://www.sciencedirect.com/science/article/pii/S1743919110004619

By using XCL time as a continuous variable, an incremental increase of 1 min interval in XCL time was associated with a 2% increase in mortality in both groups.​

So here's were I'll also day "only use peer reviewed journals" and good key word searching when doing your "learning" in the process of informing yourself. Remember you are not doing research, you are doing literature review:

https://cjeastwd.blogspot.com/2021/07/done-my-research.html
Not everyone has been through the process of formalised literature review to inform themselves about (bone up on) a topic, so let me offer a little guidance on that and then a practical example of critical thinking and analysis. Monash Uni has a good page aimed at grads undertaking research degrees

https://www.monash.edu/student-acad...g/critical-thinking/what-is-critical-thinking
Its a good starter (take the time, it'll save you time in the long run). They propose

1. clarify your thinking purpose and context
2. question your sources of information
3. identify arguments
4. analyse sources and arguments
5. evaluate the arguments of others and
6. create or synthesise your own arguments.

point 6 is where you start making your own "judgements" on what the diverse (you've had two opinions pointing in different directions already right?) views you've encountered mean and how they apply to you and your needs.

Then this little essay is what I'd do when reading a journal article (or an opinion piece as I identify this as being what I'm reviewing is)

My advice is that at your age the only two good solid conservative choices are bio-prosthesis and mechanical. I would pick either conservatively. I would not suggest the On-X because of the simple observations that:

1. it brings nothing proven to the table that St Jude or others offer
2. its promoted and advertised on a subject of emotional angst for which there really is no actual problem to be solved (fear of warfarin and the puny reduction it offers)
3. its actual physical claims are not backed up by evidence (doesn't bod well for its unsupportable claims)

Two threads worth reviewing

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
and

https://www.valvereplacement.org/th...-to-outdated-one-like-st-jude-and-ats.887854/
Lastly let me say that on the side of a mechanical prosthesis the only issue you have is anticoagulation management, this is actually a lot simpler today (with wide acceptance of Point of Care machines like the Coaguchek) and so just as diabetic treatment and outlook has improved leaps and bounds with no other new feature than personal blood glucose monitors the same is true with anticoagulation management in mechanical valves. Again, I refer to comments made by Dr Schaff in his "your valve my valve" part of his presentation.

Best Wishes

Thank You! It is the same video in one of your other threads that is now making me seriously reconsider to go with a mechanical valve after my initial knee jerk reaction that I didn’t want to be on blood thinners the rest of my life.

As I mentioned the docs heard that one line and never really pressed me or gave me the pros and cons which is a bit disappointing considering if I were about 4 years younger the guidelines would be for a mechanical valve. I am glad I am learning much more now. I am realistic that every choice comes with its own pros and cons.

I will go through all the other things in your post as well. Thanks again.

 

[pellicle]

Hi

Thank You!

you're welcome

It is the same video in one of your other threads that is now making me seriously reconsider to go with a mechanical valve after my initial knee jerk reaction that I didn’t want to be on blood thinners the rest of my life.

its really good to hear that, and you know what; it doesn't matter if you swing back to a bio-prosthesis (a so called tissue valve) later. It doesn't matter because if you picked tissue without considering mech then you could suffer from remorse later. So by considering it you are making an informed decision.
Just a quick point, I've noticed over the years that people think (quite incorrectly) that a bio-prosthesis is somehow good because it came from living tissue and maybe is still living.

1. its totally dead, its totally not living any more than your leather shoes are living
2. I've got steel socket wrench kits which I've used since I was in my 20's. These have worked on dozens of motorcycles and cars and are still fine. Yet none of my leather shoes have lasted that long. In heart valve context that means another intervention (either an OHS or a TAVI)

As I mentioned the docs heard that one line and never really pressed me or gave me the pros and cons which is a bit disappointing considering if I were about 4 years younger the guidelines would be for a mechanical valve.

Well firstly the Surgeons get (in my view) what amounts to irrational (verging on hysterical) pushback against "blood thinners" from the general public. I would ask where that phobia comes from ... I can answer that later if asked.
Anyway, the guidelines are for a mechanical valve right now for your age group. These are European but the American guidelines are similar.

2021 ESC/EACTS Guidelines for the management of valvular heart disease

Developed by the Task Force for the management of valvular heart disease of the European Society of Cardiology (ESC) and the European Association for Cardio-Thoracic Surgery (EACTS)

P40

11 Prosthetic valves

11.1 Choice of prosthetic valve​

Factors for valve selection are the patient’s life expectancy, lifestyle, and environmental factors, bleeding and thromboembolic risks related to anticoagulation, potential for surgical or transcatheter reintervention, and, importantly, informed patient preference.​

I refer you again to Dr Schaffs presentation (and his points about evidence and voices in meetings who just won't give it up). Next from the table:

A mechanical prosthesis should be considered in patients aged <60 years for prostheses in the aortic position and aged <65 years for prostheses in the mitral position.​

There are other factors, I encourage you to google, obtain and read the guidelines for other places as you see fit. This is from an older publication (2014 IIRC)

Point 2 of that pertains in particular to the emerging understanding that Lp(a) can effect this and so you should pick a mechanical if you have high Lp(a) levels.

I am glad I am learning much more now. I am realistic that every choice comes with its own pros and cons.

It sure does. I like the phrase in this publication:

• Valvular Heart Disease: Changing Concepts in Disease Management

Prosthetic Heart Valves​

Selection of the Optimal Prosthesis and Long-Term Management​

1. Philippe Pibarot, DVM, PhD;
2. Jean G. Dumesnil, MD, FRCP(C)

Despite the marked improvements in prosthetic valve design and surgical procedures over the past decades, valve replacement does not provide a definitive cure to the patient. Instead, native valve disease is traded for “prosthetic valve disease”

My underline.

I fully understand the reservations of going on a drug for life. I had them too, however they were not rational (and I knew it right when that feeling welled up) and what the Surgeon said to me (which pertains to me and not to you) was that on makinga choice for my 3rd OHS I did not want to be picking something that would lead inevitably to my 4th because (his words) "good surgeons will not be lining up behind you to do that surgery".

I strongly recommend you look around that anticoagulation forum here and see what's what on actual "boots on the ground" reality of AntiCoagulation Therapy (blood thinners, or ratsak). You owe it to yourself to be informed not "support your biases"


Best Wishes