To many cooks

[Captain Cavemen]

Hello Everyone well it would appear I have a relative smorgasbord of options which doesn’t make the choice any easier. Calcified bicuspid valve and dilated ascending aorta. Speaking to the surgeons the options as I see and best understand it (with a little bit of background research), and in no particular order are:

1. Mini-sternotomy plus Osaki Procedure + Ascending Aorta Replacement may last a long time then TAVI or future variation of.
2. Ross Procedure with probably median sternotomy, future TVAR or equivalent
3. Edwards Resilia plus Ascending Aorta Replacement via Mini-sternotomy. Hope for 15-20 plus years out of the valve then as surgeon stated most if not all valves will be polymer based and replaced via percutaneous methods. Surgeon stated that the Foldax Tria as a TAVR looks promising.
4. Mini-sternotomy proven tech mechanical valve + Ascending Aorta. Replacement in future via less invasive method e.g. right anterior thoracotomy

Christ on a bike (No offence by the way I was kicked off an American prayer group loosely disguised as a Heart Forum for such heresy), I do however need to come to a decision I won’t regret.

 

[cldlhd]

How old are you if you don't mind me asking? Why not full sternotomy and a mechanical valve and graft for the aneurysm?

 

[Captain Cavemen]

Hello cldlhd. These are the options presented to me by the surgeon. He specialises in Minimally Invasive Techniques hence some of the options I guess. We had a long conversation in which he stated patients are more informed than ever and as such there are, depending on how risk averse or not the patient is, a wider variety of potential options factoring in not just surgical risk and outcomes but also soft factors such as the size of scaring, medicine dependencies e.g. Blood Thinners and future / on the horizon technologies meaning those that have a realistic likelihood of being in general circulation over the next ten years or the life of the patient.
In terms of these future technologies he seemed sure that hybrid methods using catheter based delivery will essentially become the norm alongside minimally invasive surgical methods. In particular he seemed very enthused about the Polymer Valve technologies and another which has demonstrated good results in trials for Pulsed Cavitational Ultrasound Softening. A French series of trials is underway by a company called Cardiawave. I believe the longer term ambitions are to use this technology with stem cell aortic leaflet regeneration (it all sounded a bit Star Trek).
But back to your question I'm 51 so yes Mechanical with the full zipper is still a possibility but the surgeons seem, based in part on the hospitals own independent research coupled with the latest manufacturer data (so called COMMENCE clinical trial) and experience, very confident with the Edwards Inspiris Resilia Valve and they have been fitting these in patients 50 and above now for a couple of years in increasing numbers. I really need to review all of these options and come to hopefully an informed and sensible conclusion.

 

[Captain Cavemen]

How old are you if you don't mind me asking? Why not full sternotomy and a mechanical valve and graft for the aneurysm?

Hello cldlhd. These are the options presented to me by the surgeon. He specialises in Minimally Invasive Techniques hence some of the options I guess. We had a long conversation in which he stated patients are more informed than ever and as such there are, depending on how risk averse or not the patient is, a wider variety of potential options factoring in not just surgical risk and outcomes but also soft factors such as the size of scaring, medicine dependencies e.g. Blood Thinners and future / on the horizon technologies meaning those that have a realistic likelihood of being in general circulation over the next ten years or the life of the patient.
In terms of these future technologies he seemed sure that hybrid methods using catheter based delivery will essentially become the norm alongside minimally invasive surgical methods. In particular he seemed very enthused about the Polymer Valve technologies and another which has demonstrated good results in trials for Pulsed Cavitational Ultrasound Softening. A French series of trials is underway by a company called Cardiawave. I believe the longer term ambitions are to use this technology with stem cell aortic leaflet regeneration (it all sounded a bit Star Trek).
But back to your question I'm 51 so yes Mechanical with the full zipper is still a possibility but the surgeons seem, based in part on the hospitals own independent research coupled with the latest manufacturer data (so called COMMENCE clinical trial) and experience, very confident with the Edwards Inspiris Resilia Valve and they have been fitting these in patients 50 and above now for a couple of years in increasing numbers. I really need to review all of these options and come to hopefully an informed and sensible conclusion.

 

[cldlhd]

Hello cldlhd. These are the options presented to me by the surgeon. He specialises in Minimally Invasive Techniques hence some of the options I guess. We had a long conversation in which he stated patients are more informed than ever and as such there are, depending on how risk averse or not the patient is, a wider variety of potential options factoring in not just surgical risk and outcomes but also soft factors such as the size of scaring, medicine dependencies e.g. Blood Thinners and future / on the horizon technologies meaning those that have a realistic likelihood of being in general circulation over the next ten years or the life of the patient.
In terms of these future technologies he seemed sure that hybrid methods using catheter based delivery will essentially become the norm alongside minimally invasive surgical methods. In particular he seemed very enthused about the Polymer Valve technologies and another which has demonstrated good results in trials for Pulsed Cavitational Ultrasound Softening. A French series of trials is underway by a company called Cardiawave. I believe the longer term ambitions are to use this technology with stem cell aortic leaflet regeneration (it all sounded a bit Star Trek).
But back to your question I'm 51 so yes Mechanical with the full zipper is still a possibility but the surgeons seem, based in part on the hospitals own independent research coupled with the latest manufacturer data (so called COMMENCE clinical trial) and experience, very confident with the Edwards Inspiris Resilia Valve and they have been fitting these in patients 50 and above now for a couple of years in increasing numbers. I really need to review all of these options and come to hopefully an informed and sensible conclusion.

Yes it can be a bit overwhelming. I'm one year older than you but I had my surgery six years ago. Hopefully technology will make some of these choices more obvious as time goes on, I don't claim to be enough of an expert to offer any real advice other than in my opinion I think sometimes things like TAVR pushed in younger and younger patients partially because of the ease of the surgery. Maybe that's just me being skeptical, or maybe it's me knowing people who work in the insurance industry and how much more they probably prefer that procedure which is probably much cheaper. I can also see it as a bit of giving The customer what they want to an extent as of course all else being equal it's much quicker and easier recovery wise. My main thought was that of longevity of the surgery and hopefully being one and done. I wish you the best of luck and making your decision

 

[Wiles Darkwinter]

Hahaha - off topic but I too was removed from the forum I believe you’re referring too. I wrote the F word in a post (not aimed at anymore just for emphasis), a witch hunt ensued. I then posted saying I don’t know how you’re all going to survive recovery from surgery if you’re not resilient enough to read a four letter word. And that was me. Gone!

What are your interests and goals over the next 30 years? If you are an athlete and that’s important to you, then I’d consider a bio valve with your graft, other wise a lot of people on this forum live very actively and happily with their mech valves, once they settle into their self testing routine.

 

[Wiles Darkwinter]

I’d also add that in my own experience, this is all psychological. I found myself deliberating over stuff that in the end didn’t really matter. My perception of what life would be like with say, a mechanical valve - was all ignorant and fear driven. Saying things to myself like, “yeah but one day I might wanna compete at the Olympics…” - despite never competing in any sport ever. Just preposterous thinking because I had already subconsciously decided I didn’t want the mech.

 

[Chuck C]

Hi Captain,
I am just a little older than you are and had my aortic valve replaced 13 weeks ago. I had my mind almost totally made up to go with a tissue valve, as I am very physically active and compete in multiple combat sports. But, the more I researched the issue, the more I came to the conclusion that a mechanical valve would give me the best statistical chance at having a normal life span and that I could still be active with a mechanical valve, just needed to adjust my activities.

I'll address the other options presented as best I can.

1. I can't speak to the Osaki, as I am not familiar with it.
2. I considered Ross, but ultimately this seems like a bad idea, as you end up with a two valve problem in 20 years and will probably face multiple future surgeries in your future.
3. Edwards Resilia. This is the valve that I planned to go with initially, before I changed my mind and went mechanical. You said: " based in part on the hospitals own independent research coupled with the latest manufacturer data (so called COMMENCE clinical trial) and experience, very confident with the Edwards Inspiris Resilia Valve "
The Commence Trial only has about 5 years of human data. This is not enough to make any long term predictions about how long the valve will last. There is hope that it will last longer, due to the anti-calcification treatment, but this is only hope. I consulted with two of the top surgeons in the country, and they both told me that at age 53 I had to expect that the Edwards Resilia would get me 10 years. If it gets me more that would be a bonus, but the current data can't support that conclusion. And, one of those surgeons was on the team who designed the Resilia. BTW, it is different once you get to be 65 years old +, as the tissue valves last longer in older patients.

Here was the process that I went through, that brought me from heavily leaning towards the Edwards Resilia tissue valve, to ultimately choosing mechanical.

I was thinking that I would go tissue and then TAVR and then another TAVR in TAVR, and would thus hope to avoid a second open heart surgery. While this scenario was possible, I came to the reality that I really had to wear rose colored glasses to play that route out in a way that had a good outcome. Reason: my optimistic hope was to get 15 years out of the Resilia valve, so now I am age 68 by the time I need replacement. Then I get TAVR and hope to get another 15 years out of that, bringing me to age 83 at which point I go TAVR in TAVR.

But, when I was honest with myself I came to accept that I had to expect only 10 years out of the tissue valve given that I am under 60 years old and we youngsters go through valves quicker. I met with 2 of the top surgeons in the country and both told me to expect 10 years, and this is what the data would suggest. Anecdotally on this forum I also noticed that so many times tissue valve folks would come around and share that they needed a new valve after 8-12 years, although occasionally someone would get longer.

So, when I did the math realistically, I was looking at:

-First OHS at age 53

-Second operation probably at about age 63, which I hoped to be TAVR, but really there is no way to know if I would be a good candidate for valve in valve TAVR. A lot of variables, such as the distribution of the calcification.

-Even if I was able to do TAVR for operation #2, the longevity of TAVR is unknown and there may be particular issues in longevity and survivability with valve in valve TAVR, given the lack of data currently.

-If I am fortunate to be able to do TAVR for #2, although I would hope it would last longer, realistically I did not feel it was wise to expect more than 8-10 years from the TAVR valve. Say it lasts 10 years and takes me to 73, now I either face OHS in my 70s, which I really would not look forward to, especially as it would be my second OHS or I face TAVR in TAVR if I am a good candidate. The issue with TAVR in TAVR, as explained by all cardiologists and surgeons I consulted with, is that now we have 3 valves in one opening and the valve area would be very small. My UCLA cardiologist said that I should not expect to have enough cardiac output at that point to do much more than walk. He said, that maybe that would be good enough once I am in my 70s. Well, both my parents are showing signs of longevity and my dad still plays tennis and moves real good at age 78, so the idea that I would have such a small valve area that I would probably just be able to walk at 73 did not sound appealing.

I also felt that it would be very optimistic to expect to get more than 5 years from the valve in valve in valve. So, that would leave me in a pretty bad spot at about age 78. True, I might be a few years older than 78 when I get to that point, but it also could be several years sooner if either the tissue prosthetic did not give me a full 10 years, or the TAVR did not last 10 years.

Another big factor was also reading many threads on this site about being on warfarin and realizing that most of the things that people believe about it are myth. I have been on warfarin for 13 weeks and can add my voice to the comments that life is very normal on warfarin. I am able to eat and drink what I want and I have had many days drinking a lot of beer honestly, while I watch the fights. Today I hiked up Mt. Monserate and ran on the way down. True, I will not be able to compete in martial arts anymore, but I plan to continue teaching and still train, but with caution. I am at peace with that.

Anyway, that was how I came to my decision, but there are certainly those who are in our age group and have chosen tissue valve. We each have our own journey and I wish you the best of luck regardless of which valve you choose. The choice is yours alone.

 

[pellicle]

Christ on a bike (No offence by the way I was kicked off an American prayer group loosely disguised as a Heart Forum for such heresy), I do however need to come to a decision I won’t regret.

you just brightened my day right there

Ok ... let me see (probably going to tread on a few toes here, but) here goes:

first lets look at this:

But back to your question I'm 51 so yes Mechanical with the full zipper

please see my response here:
https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-6#post-907653
of course that wasn't written to you, but I just wanted to clarify that point without typing it again.

very confident with the Edwards Inspiris Resilia Valve

should get you between 10 and 20 years ... ironically the more active you are the less it'll give you. Remeber that just like what you've got now, tissue prosthesis go through a "dying stage" of SVD (see here for my post and definition)

1. Mini-sternotomy plus Osaki Procedure + Ascending Aorta Replacement may last a long time then TAVI or future variation of.

or may not ... the interesting thing about a mech is that barring another surgical requirement (which would also scuttle the Good Ship Osaki) that choice will last you forever ... and of course the most likely candidate for "redo" with a mechanical is "Aneurysm" which you would appear to be doing now.

2. Ross Procedure with probably median sternotomy, future TVAR or equivalent

sure ... how doses this deal with aneurysm (or have I misunderstood your above point #1?? Why not bugger a perfectly good valve (which may need replacement as Arnie found) to put the wrong valve in the Aortic position? Why would you not go for a cryo preserved homograft of the Aortic valve (and probably get 20 years out of it)??

3. Edwards Resilia plus Ascending Aorta Replacement via Mini-sternotomy. Hope for 15-20 plus years out of the valve

hope ... you sure you can't rejoin that prayer group? And what the heck is it with this mini-sternotomy stuff? Does cutting that bit less bone make so much difference, but

• stopping your heart
• applying you to a machine to ventilate and circulate your blood
• the risks of brain damge (minor that they are) from the above
• the risks of infection (look em up)

all count for nothing? I just don't get this "mini-sternotomy" stuff even figuring in a undergraduate level risk assessment.

then as surgeon stated most if not all valves will be polymer based and replaced via percutaneous methods. Surgeon stated that the Foldax Tria as a TAVR looks promising.

we love trials ... Fusion has looked promising within the next ten years every decade of my life since school (so 1982)

4. Mini-sternotomy proven tech mechanical valve + Ascending Aorta. Replacement in future via less invasive method e.g. right anterior thoracotomy

having already addressed the miniskirt phenomenon and I have no clear idea why you'd need "replacement in future" or why you'd imagine that replacing a mech valve (or any valve) would be "less invasive"

hmm ... ok ... its old, but I'll post it again. Please do watch it carefully and pause or go back 5 sec when you think "wait, what did he say"



pay more strict attention to the stuff on AC Therapy and remember that "home monitoring" (which I do) is even more of a game changer than he anticipated (well, outside the USA mainly, but still).

Then my question to you is "why all the others above 4 ... is it the worry of a pill? Have you searched here on the subject of Anticoagulation?

Here's a blog post which I consider the the prime reference on my blog on the topic
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html*(edit: corrected the "wrong" link)

you can see that I've had surgeries and procedures on warfarin and when people say "it can be managed" what they mean is (in the main) its trivial.

Now, is there some genetic blood disease you haven't mentioned? Because I still feel that nothing has changed since they wrote these guidelines

Bounce back with any "questions" or clarifications.

Best Wishes

PS: just thought ... I know you'll be focused on the now, but for conjectures sake, what do you see yourself doing for the next 20 years (making you 71)? How would you like to be at 70?

I can say after I came home from my second debridement surgery I felt like 5hlt, yet I was only 48. That third surgery was hard, but the infection and its treatments lasted months (Nov through to April) and having only me at home meant when I got back from hospital I was weak and yet had some demanding things to do. It gave me a taste of what it would be like coming home from surgery in my 70's (except that'll be worse). I'll just leave this here to consider

it took a lot of work to get back to XCSkiing again, this is about two years work

 

[carolinemc]

Hello Everyone well it would appear I have a relative smorgasbord of options which doesn’t make the choice any easier. Calcified bicuspid valve and dilated ascending aorta. Speaking to the surgeons the options as I see and best understand it (with a little bit of background research), and in no particular order are:

1. Mini-sternotomy plus Osaki Procedure + Ascending Aorta Replacement may last a long time then TAVI or future variation of.
2. Ross Procedure with probably median sternotomy, future TVAR or equivalent
3. Edwards Resilia plus Ascending Aorta Replacement via Mini-sternotomy. Hope for 15-20 plus years out of the valve then as surgeon stated most if not all valves will be polymer based and replaced via percutaneous methods. Surgeon stated that the Foldax Tria as a TAVR looks promising.
4. Mini-sternotomy proven tech mechanical valve + Ascending Aorta. Replacement in future via less invasive method e.g. right anterior thoracotomy

Christ on a bike (No offence by the way I was kicked off an American prayer group loosely disguised as a Heart Forum for such heresy), I do however need to come to a decision I won’t regret.

Depends on what you feel good about, all good choices, but you do have a future surgery to look forward. Just go with the gut feeling is the best way.

 

[carolinemc]

Hello cldlhd. These are the options presented to me by the surgeon. He specialises in Minimally Invasive Techniques hence some of the options I guess. We had a long conversation in which he stated patients are more informed than ever and as such there are, depending on how risk averse or not the patient is, a wider variety of potential options factoring in not just surgical risk and outcomes but also soft factors such as the size of scaring, medicine dependencies e.g. Blood Thinners and future / on the horizon technologies meaning those that have a realistic likelihood of being in general circulation over the next ten years or the life of the patient.
In terms of these future technologies he seemed sure that hybrid methods using catheter based delivery will essentially become the norm alongside minimally invasive surgical methods. In particular he seemed very enthused about the Polymer Valve technologies and another which has demonstrated good results in trials for Pulsed Cavitational Ultrasound Softening. A French series of trials is underway by a company called Cardiawave. I believe the longer term ambitions are to use this technology with stem cell aortic leaflet regeneration (it all sounded a bit Star Trek).
But back to your question I'm 51 so yes Mechanical with the full zipper is still a possibility but the surgeons seem, based in part on the hospitals own independent research coupled with the latest manufacturer data (so called COMMENCE clinical trial) and experience, very confident with the Edwards Inspiris Resilia Valve and they have been fitting these in patients 50 and above now for a couple of years in increasing numbers. I really need to review all of these options and come to hopefully an informed and sensible conclusion.

For non-evasive for the aortic valve is a long way off. Good luck in making your final choice and what really happens in surgery.

 

[Captain Cavemen]

For non-evasive for the aortic valve is a long way off. Good luck in making your final choice and what really happens in surgery.

Hi Carolinemc, I believe I'm correct in saying minimally invasive as opposed to non-invasive techniques are commonly used for the Aortic Valve e.g. TAVR, Mini-sternotomy, right anterior thoracotomy. Less so for Ascending Aneurysms where a Median Sternotomy or Mini-Sternotomy are used. Not really looking forward to it (I really wish your evasive surgery was an option ), but ideally I would prefer to go into major surgery fully informed as opposed to just my 'gut feeling' I'm no expert by the way but prefer to be my own advocate and this forum has some excellent and touchingly open and honest advice based on peoples actual thoughts and experiences. Best Wishes.

 

[Captain Cavemen]

Pellicle, Chuck C, Wiles Darkwinter, cldlhd et al, Thank you so much for your responses and the obvious effort you have put in along with some of the (I'm sure), more personal elements and experiences. It really is one choice you either never want to have to make or get wrong (Understanding philosophically there really is no right or wrong choice only one you are happy with and can live with). There is a lot of information in your replies that I need some time to review to enable me to further process / discuss, of particular interest to me is the overall decision making process. You can use your own and surgeons / medical teams rationale but to read other peoples is very refreshing, very refreshing indeed.
This site is so different to other forums where the nuances of healthcare systems, belief or lack of and the multitude of complications take precedence over rational conversation and decision making. Once again all the best and enjoy your weekend.

 

[pellicle]

There is a lot of information in your replies that I need some time to review to enable me to further process / discuss, of particular interest to me is the overall decision making process.

Wise
Take your time, and remember that if you find yourself changing sides, then back again that's a good sign. It means you are understanding that side.

Best Wishes

 

[pellicle]

Oh and Captain, just a few thoughts on your thinking process. I don't know exactly what you do in "University Science" but at my University I worked in the teaching support area, which has been surprising to me in how few Academics and Students actually grasp "Critical Thinking" so firstly I'd like to put this out there to guide your analysis. Be:

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

I would hope you're confining your analysis of the above mentioned 4 options to Peer Reviewed Journals but even still I would remind you of a few points to keep in mind.

1. when someone writes a paper about "their method" they have a bias, its up to you to see that bias in what they write and how that applies to you
2. when reading things that say stuff such as "better outcomes" ask yourself what is better and under what circumstances or criteria. A common thing to read is "no worse outcomes than" ... really ...
3. look at time scales involved, ask yourself "do you see yourself wanting that beyond 10 years (the common bench mark)
4. since almost nothing is written about mechanical anymore and it has become the bench mark for comparison (says something right there if you ask me) you will commonly see reference to thrombosis risk. This is a very real risk and features high in the minds of surgeons who do not support mechanical. Why is this so? Well the reasons are related to a few points;
   * comparison to so called "Usual Care" of INR management where apparently the bar is 70% inside theraputic range (myself I'm always over 90% since managing myself)
   * the fact that something like half of warfarin users are non-compliant with warfarin (and gosh, come to harm)
   These surgeons see these basic stats (and usually aren't interested in how to counter them) and look for a solution which takes them away from being a highly trained poodle doing the same old tricks every day and naturally following rigid and repetitive steps (must be sort of boring).

I once wrote a blog post which follows what I think is a reasonable sort of "critical analysis" which you'll find here.
https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
So apologies if my above has the appearance of "teaching grannie how to suck eggs", but its genuinely well intentioned.

reach out to discuss my own history and my reasons if you wish (always happy to devote time to a valver). You'll see from my bio the basics, you can find more on my blog (as long as you're not using a phone to view it)

I hope that helps

 

[carolinemc]

Hi Carolinemc, I believe I'm correct in saying minimally invasive as opposed to non-invasive techniques are commonly used for the Aortic Valve e.g. TAVR, Mini-sternotomy, right anterior thoracotomy. Less so for Ascending Aneurysms where a Median Sternotomy or Mini-Sternotomy are used. Not really looking forward to it (I really wish your evasive surgery was an option ), but ideally I would prefer to go into major surgery fully informed as opposed to just my 'gut feeling' I'm no expert by the way but prefer to be my own advocate and this forum has some excellent and touchingly open and honest advice based on peoples actual thoughts and experiences. Best Wishes.

Yeah the aortic valve it a tricky area and there have been improvements. Hopefully, if I need mine replaced, there will no more of the torture device and no more having the heart our for a aortic valve replacement. And there are improvements and research done everyday to ease the surgery of OPH to be not as evasive as it is now.