Getting confused - Questions re: Ross and other options - Severe AR

[pellicle]

lets look at this paper:

https://www.academia.edu/21842085/Under_use_of_the_Ross_operation_a_lost_opportunitystatement: The Ross procedure (figure) is the only operation that guarantees long-term viability of the aortic valve substitute.

reaction: false, the cryopreserved homograft has this

question: what is long term?
ans?: the citation for that assertion is here: Long-term outcomes after autograft versus homograft aortic root replacement in adults with aortic valve disease: a randomised controlled trial - PubMed

it is a study that one should read carefully:

1. The primary endpoint was survival of patients at 10 years after surgery.
2. 228 patients were randomly assigned to receive an autograft or a homograft aortic root replacement. 12 patients were excluded because they were younger than 18 years; 108 in each group received the surgery they were assigned to and were analysed
3. There was one (<1%) perioperative death in the autograft group versus three (3%) in the homograft group (p=0.621). At 10 years, four patients died in the autograft group versus 15 in the homograft group.
4. Actuarial survival at 10 years was 97% (SD 2) in the autograft group versus 83% (4) in the homograft group.

with respect to 1: so not long, I've already send you this personally however its worth posting it here. Its worth mentioning that I discovered this long after my OHS and found it was the same team that did mine:
https://pubmed.ncbi.nlm.nih.gov/11380096/

Actuarial late survival at 25 years of the total cohort was 19 +/- 7%....​

... an actuarial 15-year freedom in the 861 patients having aortic valve replacement +/- CABG surgery of 92%​

For all cryopreserved valves, at 15 years, the freedom was​

47% (0-20-year-old patients at operation),​

85% (21-40 years),​

81% (41-60 years) and​

94% (>60 years).​

Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098).​

myself I got 20 years from that valve (I was in the 21 to 40 group at the time). I may have gotten longer but an aneurysm drove replacement. This is not just a casual mention, for if you have a Ross and then later an aneurysm you'll likely need another valve in the Aortic position and you'll face a dikky tricuspid in the future ... and probably monitoring of 2 valves instead of one.

with respect to 2: its not a large study, and as shown in a larger study above the actual better survival and freedom from replacement was quite high too at 15 years not 10

with respect to point 3: I'm personally more interested in 20 years than 10, so 15 is better IMO ... again I seldom see Ross figures cited out past 10 years. Same goes with tissue prosthetic.

Personal statement: I can not in good conscious tell a person to have something that I do not believe myself to be the best for them. I personally have spent a lot of time looking at survival and reoperation data in an analytical and detached way.

I personally now have a mechanical valve and I have personally had a repair (as a child) and a homograft as a 28 year old.

The statistics speak to me more than my personal experience because my personal experience is not replicatable in other peoples situations. Thus I only comment about what's possible and probably for others. I do not try to speak about my choices except to offer a voice of experience about my (and the people I assist to manage) INR management related situation.

I believe strongly that there is a hysteria around avoidance of anticoagulation which is backed by two things: what the surgeons statistically see (which is the result of poor compliance and poor INR management) and what the general public perceive (which is often wrong).

I take responsibility for my words, choosing them carefully and doing my best to ensure they fit the needs of the person I'm replying to. I follow up on what I've written and provide corrections when I find errors.

I would hope all participants here do the same, however I don't see that. I see people "rooting for their own teams" which smacks of justifying their own decisions.

 

[MdaPA]

please explain how that is not a marginal case (given age distribution of AVR)

From what I gather from the OP's husband perspective, it may not be marginal as the OP stated her husband was looking for "a better ability to exercise at peak levels." as he is a marathoner. The Ross does offer better hemodynamic performance than the other options. Perhaps this is the deciding factor for the OP's husband but for most others, it would not be.

From all other aspects, I agree, it appears to be a marginal case for the Ross vs a homograft but it does also offer the chance for a longer duration in AV position at the cost of a possible intervention in PV position.

Surely support for a valve surgery should take into account them not just that you had it (or your wife). Voiced support for a surgery type should take that into account.

Please don't get me wrong, I am not voicing support for the Ross, I'm just trying to help the OP in making an informed decision. In hindsight, I think it was a wrong decision for my wife over 20 years ago (as the valve in her PV position may need a future intervention) but she did it to avoid anti-coagulation for pregnancy reasons.

there is also a push to build more coal fired power ...

No, I don't believe this is true in the US, especially with the current administration.

there are often more interests at work than "what is best for the patient" ... sometimes its about what is best for the surgeons personal preference.

Perhaps in certain cases but I personally don't believe this is true in this situation based on the credibility of the authors/contributors.

 

[MdaPA]

lets look at this paper:
https://www.academia.edu/21842085/Under_use_of_the_Ross_operation_a_lost_opportunity

I hope that the OP and her husband review your detailed analysis so they can make a better informed decision.

I take responsibility for my words, choosing them carefully and doing my best to ensure they fit the needs of the person I'm replying to. I follow up on what I've written and provide corrections when I find errors.

I would hope all participants here do the same, however I don't see that. I see people "rooting for their own teams" which smacks of justifying their own decisions.

I would hope I do the same and if you think you saw me "rooting for my own team" then please point this out to me so I can improve on that, as that was not my intent.

 

[pellicle]

No, I don't believe this is true in the US, especially with the current administration.

I didn't say it was the USA, but I view our atmosphere as a global thing.

does also offer the chance for a longer duration in AV position at the cost of a possible intervention in PV position.

I have not seen that data for anything like 15 years to support that claim

 

[MdaPA]

I have not seen that data for anything like 15 years to support that claim

Perhaps we will see this when the trial completes.
Ross for Valve Replacement in AduLts Trial - Full Text View - ClinicalTrials.gov

See the below which seems to support these claims (in young adults):

Young adults requiring aortic valve surgery definitely represent a challenging situation, and all valve substitutes pose many disadvantages (1). To date, only 1 randomized trial has assessed outcomes following pulmonary autograft and homograft aortic root replacement. Results at 13 years showed significantly improved survival (95% vs. 78%) and fewer reoperations (94% vs. 51%) in Ross patients (9). A study by Ruel et al. (18) found that survival at 20 years was much lower (66% and 52%) in young adults who underwent either bioprosthetic or mechanical aortic valve implantation. Moreover, bioprosthetic valve degeneration requiring reoperations is common in young adults (19). Bourguignon et al. (20) reported their 20-year experience with the Carpentier-Edwards Perimount bioprosthesis in a large population and found a much higher reintervention rate (65.7% at 20 years) and mortality rate (34.4% at 15 years). Overall, it appears that the Ross procedure confers a solid survival advantage over commonly used valve substitutes.

Clinical Outcomes Following the Ross Procedure in Adults: A 25-Year Longitudinal Study



Also, these claims are coming from very reputable sources like the Cleveland Clinic.

Advantages: The pulmonic valve is anatomically very similar to the aortic valve and could be an ideal substitute for the aortic valve. The new aortic autograft is a living valve and it will grow as the young adult grows, making this a good option for young patients. The blood flows with less pressure through the pulmonary valve than the aortic valve, therefore a homograft valve could last longer in the right-sided pulmonary valve position. The risk of thromboembolic complications (blood clots, stroke) and the risk of valve infection are very low -- lower than for any alternative valve prosthesis. The hemodynamic performance makes the Ross operation an attractive alternative for athletes. The pulmonary autograft valve has a good chance* of being a life-lasting solution for the aortic valve.

*Our qualified guess is that the pulmonary autograft will last a lifetime in at least half of Ross procedure patients.
Aortic Valve Surgery in the Young Adult Patient

Sales pitch? Perhaps a bit, sure. Unfortunately, most folks in their time of need rely/focus on these claims without looking for and analyzing the data. That's the power of this forum to question and challenge these claims.

 

[pellicle]

Good morning

First I'll add an underline under seems, which is good that its there because that's one of the first steps in thinking critically.

See the below which seems to support these claims (in young adults):

...Results at 13 years showed significantly improved survival (95% vs. 78%) and fewer reoperations (94% vs. 51%) in Ross patients (9). A study by Ruel et al. (18) found that survival at 20 years was much lower (66% and 52%) in young adults who underwent either bioprosthetic or mechanical aortic valve implantation.
...

I read the Reual et al study, it reported this in the results:

...There were 4 hospital deaths (1.3%), and overall survival at 10 and 20 years was 94.1% and 83.6%, respectively. Long-term survival was not significantly different in patients who required Ross-related reintervention (log-rank p = 0.70). However, compared with the general population, survival was significantly lower in patients following the Ross procedure when matched on age and *** (p < 0.0001). ​

which is interesting because studies by other researchers show that the difference in patients undergoing (non ross) aortic valve replacement were not significantly lower than the general population.

That should be enough to set a truly "questioning mind" in chase of "WTF"

I write the following because I take in good faith the genuine intentions behind:

I would hope I do the same and if you think you saw me "rooting for my own team" then please point this out to me so I can improve on that, as that was not my intent.

You earlier remarked about me doing a good job on analysis (your words were "detailed analysis") . I was not entirely sure if that was a genuine compliment or flattery. I felt this way because I know myself that I did nothing more than a cursory examination. This is what is expected of some one who is a graduate. I felt this way because having done a science degree, and a science research masters I know what's expected. I know that my writing was barely above grade school level.

At the university where I studied (and worked) we teach that critical analysis is the cornerstone to a literature review. Such must be done before any proper research undertaking. Critical thinking goes like this ... be:

• inquisitive and curious, always seeking the truth
• fair in their evaluation of evidence and others’ views
• sceptical of information
• perceptive and able to make connections between ideas
• reflective and aware of their own thought processes
• open minded and willing to have their beliefs challenged
• using evidence and reason to formulate decisions
• able to formulate judgements with evidence and reason.

Critical thinking experts describe such people as having “a critical spirit”, meaning that they have a “probing inquisitiveness, a keenness of mind, a dedication to reason, and a hunger (or eagerness for) reliable information” (The Delphi Research Method cited in Facione, 2011, p. 10).

In my masters my literature review covered something like 20 documents and my entire citations list was nearly 100 papers (as well as my own research). That is what I call detailed.

So reading should not be about merely reading and swallowing what's in the Abstract, it must be about the details; for they can present what version of what they did for their own interpretation. However if you've ever seen a movie you'll discover that there are frequently multiple interpretations of the the same thing.

Lets start with whats here and then move on past that to one of your other sources.

25 year longitudinal study, yet they write: "...Median follow-up was 15.1 years and up to 25 years."

so median was 10 years short of 25.

A good researcher (in a literature review) will seek to get congruity between one study and another ... yet in these studies (promoting the Ross) the Ross comes out much better than the opposition and the opposition comes out much worse than the other studies not studying the Ross?

That doesn't raise an eyebrow?
Then in their Patient selection they say: the Ross procedure was proposed to adults younger than 55 years, those with a strong desire to avoid long-term anticoagulation, and women of childbearing age.

interesting wording ... one wonders if other deck stacking occured (or one should wonder unless the purpose of reading the study it to support your personal bias).

Then: "... Four surgeons performed the Ross procedure at different time period, which represents 22.7% of all aortic valve replacements in adults <55 years of age." ; no such data on the non Ross recipients to whom they are compared.

Do you see how I've approached this?

Now all this was written (with time out to tend my fire this winter morning) over a single cup of coffee that did not go cold.

Because I have been bitten before by limits (and fair enough too) on what can be written here I've put up this Google Drive document examining one of the documents I previously gave a casual nod to dissection. This took about an hour.

In that I undertake a reasoning based line of questioning on sentences as I would be required to do at an undergraduate level (before I would be able to conduct a masters under a supervisor).

Please feel free to copy and paste any of that and open up discussion to my methods and to my accuracy.

Best Wishes

PS: I wanted to clarify that

1. I mention my qualifications because I see that many seem to not be clear on the training and discipline that comes with doing a degree and a higher degree. It is like someone who can't understand why a trained boxer can flatten "your mate"
2. some things need to be made clear in case the reader misses them, there are variations on the Ross.
   1. Original flavor is a homograft in the tricuspid position, this is in some cases being substituted for a bio-prostheses
   2. homografts are different to autografts: an autograft comes from you, not just any homosapiens.
   3. acquiring and handling homografts of valves requires incredible skills as even the touch of a rubber glove on the leaflet will cause issues (see this excellent article about the structure of a valve leaflet)
   4. there is a variant of the Ross which is passed off as the Ross until one sees the references. It is called Inclusion cylinder method and man, I recommend you examine it, because talk about cottage industry stitching prize winner there.

 

[MdaPA]

You earlier remarked about me doing a good job on analysis (your words were "detailed analysis") . I was not entirely sure if that was a genuine compliment or flattery.

Meant as a compliment.

So reading should not be about merely reading and swallowing what's in the Abstract, it must be about the details; for they can present what version of what they did for their own interpretation.

Agree, but most do not take the time nor have the "critical spirit” to do it.

1. Original flavor is a homograft in the tricuspid position, this is in some cases being substituted for a bio-prostheses

Small correction, the Ross procedure involves a homograft or a bio-prostheses being sewed into the "pulmonary" position, not the "tricuspid" position (unless there is another twist to this procedure I'm not aware of?).

Now all this was written (with time out to tend my fire this winter morning) over a single cup of coffee that did not go cold.

WOW, it's winter Down Under now! It's a heat wave here on the U.S. east coast. Wish we could switch so I could stoke my Vermont Castings wood stove!

You raised some good points. I will take a closer look when I get some quiet time. It's a long holiday weekend here in the U.S. and the grill will be working over-time.

 

[pellicle]

Hi

Agree, but most do not take the time nor have the "critical spirit” to do it.

yet so many feel strongly about the results of their research of "informing themselves" to the point where they won't listen to the other side of the argument. Indeed I've personally experienced an amount of personal attack for consistently expressing analytic views.

Small correction, the Ross procedure involves a homograft or a bio-prostheses being sewed into the "pulmonary" position, not the "tricuspid" position

you are exactly correct, my mistake. I keep considering it another tricuspid valve (the Mitral is bicuspid) of which there are only two remaining to be harvested (assuming the removal of the Aortic valve), this leads me to the incorrect naming of it as I have. Perhaps also I struggle with the correct spelling of pulmonary (which is sheer laziness on my part).

on a side note I don't like the idea now days of relying on homografts because of the supply side issues, both ethical and availability. China is engaged in forced organ donations (largely from political prisoners) for sale and India has its problems with "disappearing young homeless". I don't think that the Ross makes as much sense with a bio-prosthetic in place.

Homografts have diminished in Australia markedly since I had mine in 1992 not least because of the increase in AVR in Australia now, but also waiting for an appropriate donor tissue to appear takes time.

My view is that the low hanging fruit of durable valves is found in mechanical and all the data that suggests its not ideal relies on studies with the poorest INR management. There are as many studies to be found saying that "satisfaction with the valve" improves in patients over time, and so by the 10 year mark they are increasingly comfortable with it, while at the 10 year mark people with bio-prostheses are starting to ramp up their monitoring levels and perhaps their anxiety levels too.

Best Wishes

 

[MdaPA]

25 year longitudinal study, yet they write: "...Median follow-up was 15.1 years and up to 25 years."
so median was 10 years short of 25.

Yes, but I see the "25 year longitudinal study" in the title is more representative of the objective of the study, "The authors reviewed their 25-year experience with the Ross procedure", not what the "follow-up" was.

Then in their Patient selection they say: the Ross procedure was proposed to adults younger than 55 years, those with a strong desire to avoid long-term anticoagulation, and women of childbearing age.

interesting wording ... one wonders if other deck stacking occured (or one should wonder unless the purpose of reading the study it to support your personal bias).

I don't understand your point here as I don't see this as “stacking the deck”. The Ross procedure was only proposed to these select groups because this procedure is normally only indicated for these group. This was an observational study so why do you think this is “deck stacking”?

Then: "... Four surgeons performed the Ross procedure at different time period, which represents 22.7% of all aortic valve replacements in adults <55 years of age." ; no such data on the non Ross recipients to whom they are compared.

Agree, no data for the non Ross recipients but the focus of this study was observational one on the Ross procedure, not a comparison study.

But then to your point, they then make the statement in the Discussion section, “Overall, it appears that the Ross procedure confers a solid survival advantage over commonly used valve substitutes.”. A true comparison study, currently underway, is needed to substantiate this observation.

 

[Shanith]

FWIW.....these novel surgeries seemingly may require at least one additional procedure during your husband's lifetime. .....maybe in his late 70s or in his 80s and that won't be fun. I am 85 and still living with the valve I received when I was 31 and my docs tell me it will outlast me. A simple mechanical valve replacement should last his lifetime with little interference with his life or lifestyle.

Hai u face any complications in all this past 50 years

 

[dick0236]

Hai u face any complications in all this past 50 years

Hi Shanith and welcome to this forum. You will get a lot of info and positive support from this group.

In answer to your question, I have had very little problem with living with my mechanical valve over the past 54 years. My only real issue came in the mid1970s, before the introduction of the INR monitoring system. Back then, little was known about anticoagulation for mechanical valves and I compounded the problem with my own stupidity......and I suffered my one, and only, stroke. Other than that I have had NO issues........and if I was 31 today I would make the same mechanical valve choice. I prefer to stay out of the hospital as much as possible and "so far, so good".

 

[Shanith]

Hi Shanith and welcome to this forum. You will get a lot of info and positive support from this group.

In answer to your question, I have had very little problem with living with my mechanical valve over the past 54 years. My only real issue came in the mid1970s, before the introduction of the INR monitoring system. Back then, little was known about anticoagulation for mechanical valves and I compounded the problem with my own stupidity......and I suffered my one, and only, stroke. Other than that I have had NO issues........and if I was 31 today I would make the same mechanical valve choice. I prefer to stay out of the hospital as much as possible and "so far, so good".

Thanks for u r kind replay. I am 32 and having severe aortic regurgitation. My doctor suggest plan a as ross procedure and plan b mechanical. He said instead of donor valve he use dacron graft made from ptfe at pulmonary position. I am confused about this and confused about which method selection also.

 

[dick0236]

.......... I am confused about this and confused about which method selection also.

I have NO DOUBT that you could be confused with all of today's available choices. Life was much simpler back in the dawn of heart surgery in the 1960s and I did not have to choose.......there was only one valve on the market. I am not a doctor but my question has always been......How many times do I want to go thru heart surgery?

 

[pellicle]

Good morning, I hope you don't mind me also making some observations

I am 32 and having severe aortic regurgitation. My doctor suggest plan a as ross procedure and plan b mechanical. He said instead of donor valve he use dacron graft made from ptfe at pulmonary position. I am confused about this and confused about which method selection also.

you do seem a bit confused. So lets take things as you've written them:

• there is a Plan A and a Plan B (Ross and Mech)
• Dacron graft - confusing because this is usually associated with an aneurysm on the Aortic artery and not a valve and wouldn't be part of the pulmonary position operation.

So I at least need to know what you are meaning with the dacron graft. Please clarify that.

Now the next thing to do is step back and focus on the specific case you have mentioned (severe aortic regurgitation) and address that. This will require you to have a surgery and replace the diseased aortic valve. Now its important to note that there is no "cure" for valvular heart disease. What is on the table however is exchanging a disease which will kill you for one that can be managed. This is what happens when we have a heart surgery: we exchange valvular heart disease for prosthetic valve disease.

Just pause and read that above paragraph again.

Prosthetic valve disease is manageable however its management is in two ways depending on type:

1. Mechanical prosthetic valve disease is managed by AntiCoagulation Therapy (ACT). This is lifelong and while your valve will never fail YOU must be on-board and engaged with management of ACT (which is simple in theory and mostly in practice, but it depends on where you live). All things being equal this is the only option which will not require a surgical redo solution to the Aortic valve*.
2. Tissue prosthetic valve disease essentially kicks the can down the road and you get a valve which sets you back to "GO" on the board and is managed by observation until it (like your existing valve) begins to fail and a second surgery is planned. I see this wasn't on the option list and I would agree with that because its well known in the medical world that Tissue prosthetic valves do not last well in someone of 32 years of age. This would mean that you will be certain of a redo-peration within 15 years (maybe even as little as 7). You can see why it wasn't suggested
3. The Ross procedure. This is to me a curly one, lets start with the fact that it leaves you with two diseased valves when you started with only one. Its a complex surgery which has as a primary goal the avoidance of ACT and as a secondary goal the hope that it will last a lifetime and the hope that the second valve doesn't cause you a problem in the future (like it did for Arnold Schwarzenegger). It was developed IIRC to be used on the youngest of heart valve patients (adolescent, but not children). A link with details here. It also requires (in its purest form) the replacement of the pulmonary valve with a pulmonary homograft. This is not common now and (also based on what you said) it seems that the surgeon is not intending a homograft but a tissue prosthetic in that position. This is also a technically more challenging operation and requires the highest skill levels to perform properly. It is noted that in the best case situation that it performs without redo no worse than the Mechanical option.

note the * in point 1 I will return to that

So there is already (potentially) a bit of new information here for you to digest.

Some points for you to consider all of which need to be properly understood and not dismissed:

• do you have a bicuspid aortic valve? This is probably the most important point to fish out right now, because if you do it increases the chances that you will need a subsequent operation to replace a section of your aortica artery with a dacron graft (which makes me wonder if that's what's happening on this operation).
• I want to emphasise that above point because this alone will drive a future surgery.
• if you choose a mechanical valve then you are choosing to properly manage your INR (not hard, but diligence is needed). This is a commitment that may appear daunting to a younger person. If you do not follow this commitment through then you will face bad outcomes (strokes and permanent brain damage can result from foolish ignorance of your need for ACT).
• all other other than a mechanical will have the near certainty of a redo operation if you live a normal long life. There is no data on the success of the Ross for a 40 year outcome that I am aware of. 40 years is not unexpected on a mechanical valve. At 32 you will be 72 in 40 years.

So that's probably a lot to digest right there, I encourage you to read that carefully and ask any specific questions (either here or of your surgeon).

Again I come back to the important questions that need answering:

1. are you having an aortic artery repair at this time
2. are you a bicuspid aortic valve patient

Lastly I put about an hour (while cooking and eating breakfast, so don't take the above lightly), few will give you more of their time and more of the careful attention. As a friend of mine says "the most a person can give you is their time".

Best Wishes

 

[Shanith]

Good morning, I hope you don't mind me also making some observations


you do seem a bit confused. So lets take things as you've written them:

• there is a Plan A and a Plan B (Ross and Mech)
• Dacron graft - confusing because this is usually associated with an aneurysm on the Aortic artery and not a valve and wouldn't be part of the pulmonary position operation.

So I at least need to know what you are meaning with the dacron graft. Please clarify that.

Now the next thing to do is step back and focus on the specific case you have mentioned (severe aortic regurgitation) and address that. This will require you to have a surgery and replace the diseased aortic valve. Now its important to note that there is no "cure" for valvular heart disease. What is on the table however is exchanging a disease which will kill you for one that can be managed. This is what happens when we have a heart surgery: we exchange valvular heart disease for prosthetic valve disease.

Just pause and read that above paragraph again.

Prosthetic valve disease is manageable however its management is in two ways depending on type:

1. Mechanical prosthetic valve disease is managed by AntiCoagulation Therapy (ACT). This is lifelong and while your valve will never fail YOU must be on-board and engaged with management of ACT (which is simple in theory and mostly in practice, but it depends on where you live). All things being equal this is the only option which will not require a surgical redo solution to the Aortic valve*.
2. Tissue prosthetic valve disease essentially kicks the can down the road and you get a valve which sets you back to "GO" on the board and is managed by observation until it (like your existing valve) begins to fail and a second surgery is planned. I see this wasn't on the option list and I would agree with that because its well known in the medical world that Tissue prosthetic valves do not last well in someone of 32 years of age. This would mean that you will be certain of a redo-peration within 15 years (maybe even as little as 7). You can see why it wasn't suggested
3. The Ross procedure. This is to me a curly one, lets start with the fact that it leaves you with two diseased valves when you started with only one. Its a complex surgery which has as a primary goal the avoidance of ACT and as a secondary goal the hope that it will last a lifetime and the hope that the second valve doesn't cause you a problem in the future (like it did for Arnold Schwarzenegger). It was developed IIRC to be used on the youngest of heart valve patients (adolescent, but not children). A link with details here. It also requires (in its purest form) the replacement of the pulmonary valve with a pulmonary homograft. This is not common now and (also based on what you said) it seems that the surgeon is not intending a homograft but a tissue prosthetic in that position. This is also a technically more challenging operation and requires the highest skill levels to perform properly. It is noted that in the best case situation that it performs without redo no worse than the Mechanical option.

note the * in point 1 I will return to that

So there is already (potentially) a bit of new information here for you to digest.

Some points for you to consider all of which need to be properly understood and not dismissed:

• do you have a bicuspid aortic valve? This is probably the most important point to fish out right now, because if you do it increases the chances that you will need a subsequent operation to replace a section of your aortica artery with a dacron graft (which makes me wonder if that's what's happening on this operation).
• I want to emphasise that above point because this alone will drive a future surgery.
• if you choose a mechanical valve then you are choosing to properly manage your INR (not hard, but diligence is needed). This is a commitment that may appear daunting to a younger person. If you do not follow this commitment through then you will face bad outcomes (strokes and permanent brain damage can result from foolish ignorance of your need for ACT).
• all other other than a mechanical will have the near certainty of a redo operation if you live a normal long life. There is no data on the success of the Ross for a 40 year outcome that I am aware of. 40 years is not unexpected on a mechanical valve. At 32 you will be 72 in 40 years.

So that's probably a lot to digest right there, I encourage you to read that carefully and ask any specific questions (either here or of your surgeon).

Again I come back to the important questions that need answering:

1. are you having an aortic artery repair at this time
2. are you a bicuspid aortic valve patient

Lastly I put about an hour (while cooking and eating breakfast, so don't take the above lightly), few will give you more of their time and more of the careful attention. As a friend of mine says "the most a person can give you is their time".

Best Wishes

Thanx alot for your kind response and precious time.
No aortic artery repair
For me no bicuspid aortic valve
.i am attaching my chat with surgeon. You please go through once then i hope you get an idea about what my surgeon said

 

[Shanith]

Hi Shanith and welcome to this forum. You will get a lot of info and positive support from this group.

In answer to your question, I have had very little problem with living with my mechanical valve over the past 54 years. My only real issue came in the mid1970s, before the introduction of the INR monitoring system. Back then, little was known about anticoagulation for mechanical valves and I compounded the problem with my own stupidity......and I suffered my one, and only, stroke. Other than that I have had NO issues........and if I was 31 today I would make the same mechanical valve choice. I prefer to stay out of the hospital as much as possible and "so far, so good".

Thanks for kind words

 

[Shanith]

Good morning, I hope you don't mind me also making some observations


you do seem a bit confused. So lets take things as you've written them:

• there is a Plan A and a Plan B (Ross and Mech)
• Dacron graft - confusing because this is usually associated with an aneurysm on the Aortic artery and not a valve and wouldn't be part of the pulmonary position operation.

So I at least need to know what you are meaning with the dacron graft. Please clarify that.

Now the next thing to do is step back and focus on the specific case you have mentioned (severe aortic regurgitation) and address that. This will require you to have a surgery and replace the diseased aortic valve. Now its important to note that there is no "cure" for valvular heart disease. What is on the table however is exchanging a disease which will kill you for one that can be managed. This is what happens when we have a heart surgery: we exchange valvular heart disease for prosthetic valve disease.

Just pause and read that above paragraph again.

Prosthetic valve disease is manageable however its management is in two ways depending on type:

1. Mechanical prosthetic valve disease is managed by AntiCoagulation Therapy (ACT). This is lifelong and while your valve will never fail YOU must be on-board and engaged with management of ACT (which is simple in theory and mostly in practice, but it depends on where you live). All things being equal this is the only option which will not require a surgical redo solution to the Aortic valve*.
2. Tissue prosthetic valve disease essentially kicks the can down the road and you get a valve which sets you back to "GO" on the board and is managed by observation until it (like your existing valve) begins to fail and a second surgery is planned. I see this wasn't on the option list and I would agree with that because its well known in the medical world that Tissue prosthetic valves do not last well in someone of 32 years of age. This would mean that you will be certain of a redo-peration within 15 years (maybe even as little as 7). You can see why it wasn't suggested
3. The Ross procedure. This is to me a curly one, lets start with the fact that it leaves you with two diseased valves when you started with only one. Its a complex surgery which has as a primary goal the avoidance of ACT and as a secondary goal the hope that it will last a lifetime and the hope that the second valve doesn't cause you a problem in the future (like it did for Arnold Schwarzenegger). It was developed IIRC to be used on the youngest of heart valve patients (adolescent, but not children). A link with details here. It also requires (in its purest form) the replacement of the pulmonary valve with a pulmonary homograft. This is not common now and (also based on what you said) it seems that the surgeon is not intending a homograft but a tissue prosthetic in that position. This is also a technically more challenging operation and requires the highest skill levels to perform properly. It is noted that in the best case situation that it performs without redo no worse than the Mechanical option.

note the * in point 1 I will return to that

So there is already (potentially) a bit of new information here for you to digest.

Some points for you to consider all of which need to be properly understood and not dismissed:

• do you have a bicuspid aortic valve? This is probably the most important point to fish out right now, because if you do it increases the chances that you will need a subsequent operation to replace a section of your aortica artery with a dacron graft (which makes me wonder if that's what's happening on this operation).
• I want to emphasise that above point because this alone will drive a future surgery.
• if you choose a mechanical valve then you are choosing to properly manage your INR (not hard, but diligence is needed). This is a commitment that may appear daunting to a younger person. If you do not follow this commitment through then you will face bad outcomes (strokes and permanent brain damage can result from foolish ignorance of your need for ACT).
• all other other than a mechanical will have the near certainty of a redo operation if you live a normal long life. There is no data on the success of the Ross for a 40 year outcome that I am aware of. 40 years is not unexpected on a mechanical valve. At 32 you will be 72 in 40 years.

So that's probably a lot to digest right there, I encourage you to read that carefully and ask any specific questions (either here or of your surgeon).

Again I come back to the important questions that need answering:

1. are you having an aortic artery repair at this time
2. are you a bicuspid aortic valve patient

Lastly I put about an hour (while cooking and eating breakfast, so don't take the above lightly), few will give you more of their time and more of the careful attention. As a friend of mine says "the most a person can give you is their time".

Best Wishes

 

[Shanith]

Good morning, I hope you don't mind me also making some observations


you do seem a bit confused. So lets take things as you've written them:

• there is a Plan A and a Plan B (Ross and Mech)
• Dacron graft - confusing because this is usually associated with an aneurysm on the Aortic artery and not a valve and wouldn't be part of the pulmonary position operation.

So I at least need to know what you are meaning with the dacron graft. Please clarify that.

Now the next thing to do is step back and focus on the specific case you have mentioned (severe aortic regurgitation) and address that. This will require you to have a surgery and replace the diseased aortic valve. Now its important to note that there is no "cure" for valvular heart disease. What is on the table however is exchanging a disease which will kill you for one that can be managed. This is what happens when we have a heart surgery: we exchange valvular heart disease for prosthetic valve disease.

Just pause and read that above paragraph again.

Prosthetic valve disease is manageable however its management is in two ways depending on type:

1. Mechanical prosthetic valve disease is managed by AntiCoagulation Therapy (ACT). This is lifelong and while your valve will never fail YOU must be on-board and engaged with management of ACT (which is simple in theory and mostly in practice, but it depends on where you live). All things being equal this is the only option which will not require a surgical redo solution to the Aortic valve*.
2. Tissue prosthetic valve disease essentially kicks the can down the road and you get a valve which sets you back to "GO" on the board and is managed by observation until it (like your existing valve) begins to fail and a second surgery is planned. I see this wasn't on the option list and I would agree with that because its well known in the medical world that Tissue prosthetic valves do not last well in someone of 32 years of age. This would mean that you will be certain of a redo-peration within 15 years (maybe even as little as 7). You can see why it wasn't suggested
3. The Ross procedure. This is to me a curly one, lets start with the fact that it leaves you with two diseased valves when you started with only one. Its a complex surgery which has as a primary goal the avoidance of ACT and as a secondary goal the hope that it will last a lifetime and the hope that the second valve doesn't cause you a problem in the future (like it did for Arnold Schwarzenegger). It was developed IIRC to be used on the youngest of heart valve patients (adolescent, but not children). A link with details here. It also requires (in its purest form) the replacement of the pulmonary valve with a pulmonary homograft. This is not common now and (also based on what you said) it seems that the surgeon is not intending a homograft but a tissue prosthetic in that position. This is also a technically more challenging operation and requires the highest skill levels to perform properly. It is noted that in the best case situation that it performs without redo no worse than the Mechanical option.

note the * in point 1 I will return to that

So there is already (potentially) a bit of new information here for you to digest.

Some points for you to consider all of which need to be properly understood and not dismissed:

• do you have a bicuspid aortic valve? This is probably the most important point to fish out right now, because if you do it increases the chances that you will need a subsequent operation to replace a section of your aortica artery with a dacron graft (which makes me wonder if that's what's happening on this operation).
• I want to emphasise that above point because this alone will drive a future surgery.
• if you choose a mechanical valve then you are choosing to properly manage your INR (not hard, but diligence is needed). This is a commitment that may appear daunting to a younger person. If you do not follow this commitment through then you will face bad outcomes (strokes and permanent brain damage can result from foolish ignorance of your need for ACT).
• all other other than a mechanical will have the near certainty of a redo operation if you live a normal long life. There is no data on the success of the Ross for a 40 year outcome that I am aware of. 40 years is not unexpected on a mechanical valve. At 32 you will be 72 in 40 years.

So that's probably a lot to digest right there, I encourage you to read that carefully and ask any specific questions (either here or of your surgeon).

Again I come back to the important questions that need answering:

1. are you having an aortic artery repair at this time
2. are you a bicuspid aortic valve patient

Lastly I put about an hour (while cooking and eating breakfast, so don't take the above lightly), few will give you more of their time and more of the careful attention. As a friend of mine says "the most a person can give you is their time".

Best Wishes

Thax for your kind words
No aortic artery repair

No bav

 

[pellicle]

Good morning
I see that you're in India ... please tell me how much of what I said you understood?

No aortic artery repair
For me no bicuspid aortic valve

Ok, well what was the cause of your aortic valve calcification? Did you have rheumatic fever?

.i am attaching my chat with surgeon. You please go through once then i hope you get an idea about what my surgeon said

ok, so if I were you I'd change surgeon, because he is talking a tissue prosthesis in the pulmonary position. This is pretty telling right there, if in their 3 year experience they are seeing better durability from that than a homograft.

Handling a homograft is a highly specialised area (as indeed is the proper handing of the valve which they take out of you (an autograft) and put into the Aortic position (when it came from the pulmonary position).

I'd really consider a second opinion ... especially with:

and this answer just after talking in the last 3 years:

Then:

I would say that aneurysm is a category of dilation. He deftly ignores answering how common it is with "what we do see" ... 10 years is not ideal.

Given the complexity of this proposed surgery, the risks of it not being perfect, the duration you'd expect to get out of the surgery and these responses from the surgeon I'd:

1. seek another opinion (run don't walk)
2. ask yourself why everything is in 10 years not 30 or 40
3. Bicuspid Aortic Valve is strongly correlated with the development of Aortic aneurysm in later life (my second surgery was at 28 and my third was at 48 and was driven by development of Aortic Aneurysm and I was BAV). The calcification must be caused by something and the two biggest candidates are BAV or Scarlet Fever. If you have BAV then there is a distinct possibility of aortic aneurysm, in which case that lovely work on the aorta (assuming its done perfectly) will need to be ripped out and replaced with something else. Leaving you with a two valve prosthetic valve diseased heart. Your surgeon seems to not know this and not factor this in or mention it.
4. strongly consider mechanical (which means fully understanding what that means in terms of psychology and ongoing INR measurement {which is compounded by Indian choices of using Sinthrome instead of Warfarin} and other such considerations) DO NOT underestimate that you need to either grapple with these things and understand them OR just let the doctors do what they want.
5. if you are BAV and if you wish to avoid anticoagulants then I would suggest speak to a surgeon who can properly advise you and consider a Tissue prosthesis in the Aortic position to possibly defer the choice to later (or just consider mechanical now).

Lastly I'm not a scientist I'm just a guy with experience telling my views as asked. I leave it to the resident scientist here to give you a better or more reliable opinion.

Best Wishes

 

[Shanith]

Good morning
I see that you're in India ... please tell me how much of what I said you understood?



Ok, well what was the cause of your aortic valve calcification? Did you have rheumatic fever?


View attachment 888170
ok, so if I were you I'd change surgeon, because he is talking a tissue prosthesis in the pulmonary position. This is pretty telling right there, if in their 3 year experience they are seeing better durability from that than a homograft.

Handling a homograft is a highly specialised area (as indeed is the proper handing of the valve which they take out of you (an autograft) and put into the Aortic position (when it came from the pulmonary position).

I'd really consider a second opinion ... especially with:
View attachment 888171


and this answer just after talking in the last 3 years:

View attachment 888172

Then:
View attachment 888173

I would say that aneurysm is a category of dilation. He deftly ignores answering how common it is with "what we do see" ... 10 years is not ideal.

Given the complexity of this proposed surgery, the risks of it not being perfect, the duration you'd expect to get out of the surgery and these responses from the surgeon I'd:

1. seek another opinion (run don't walk)
2. ask yourself why everything is in 10 years not 30 or 40
3. Bicuspid Aortic Valve is strongly correlated with the development of Aortic aneurysm in later life (my second surgery was at 28 and my third was at 48 and was driven by development of Aortic Aneurysm and I was BAV). The calcification must be caused by something and the two biggest candidates are BAV or Scarlet Fever. If you have BAV then there is a distinct possibility of aortic aneurysm, in which case that lovely work on the aorta (assuming its done perfectly) will need to be ripped out and replaced with something else. Leaving you with a two valve prosthetic valve diseased heart. Your surgeon seems to not know this and not factor this in or mention it.
4. strongly consider mechanical (which means fully understanding what that means in terms of psychology and ongoing INR measurement {which is compounded by Indian choices of using Sinthrome instead of Warfarin} and other such considerations) DO NOT underestimate that you need to either grapple with these things and understand them OR just let the doctors do what they want.
5. if you are BAV and if you wish to avoid anticoagulants then I would suggest speak to a surgeon who can properly advise you and consider a Tissue prosthesis in the Aortic position to possibly defer the choice to later (or just consider mechanical now).

Lastly I'm not a scientist I'm just a guy with experience telling my views as asked. I leave it to the resident scientist here to give you a better or more reliable opinion.

Best Wishes

Thanx alot for your long reply.
Yes i am from india i understand ..

I have no rheumatic fever or any other symptoms in al this past 30 years.one and half year ago i am suffered long 3 weeks from cold and heavy cough.after that start to feel the heart beat and pulse go 110.then went to hospital and done the echo and found its moderate regurgitation. So doctor advice do echo in every 6 months now after one year this may i went again for echo and found the regurgitation become moderate severe and ef 55..last2 weeks i am facing high power heart beat even though the pulse is normal but the beating powrer is shaking my full body when sitting idle or lying down its its shaking alot. So now i think this is the time for surgery..

I met 3 more doctor alreday all suggest mechanical and one suggest inspiris. Last i went to this doctor because this hospital only perform ross in india and this is very famous hospital in india and his father is the ceo and founder..
One another doctor suggest minimally invasive methods. What's u r thought on minimally invasive method with mechanical valve..i stuck to this hospital only because of they are performing large number of heart surgeries.

One more question if i choose minimally invasive method for avr then any difference in output compare with ohs??