It looks like my time has come for surgery

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Josh-779

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Mar 10, 2022
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Last time I was here in March, I had an thoracic aortic aneurysm of 4.1cm and a BAV with moderate stenosis and mild to moderate regurgitation. I had a follow up appointment and got a CT scan and echocardiogram and I got the results back yesterday. My aneurysm actually shrunk to 3.7cm, but the stenosis appears to have gotten much worse.

From my report:
Peak/mean transaortic velocities are 4.2/3 m/sec, peak/mean pressure gradients 69/39 mm of Hg, estimated valve area 1.3-1.5 centimeter sq.

Compared to study dated February 4, 2022, there has been an increase in the transaortic Doppler values from peak/mean velocities 3.3/2.1 m/sec, peak/mean pressure gradients 43/39 mm of Hg.

My thoughts on why surgery sooner is better:

This is a very significant jump in 7 months, as it went from moderate to moderate/borderline severe. The normal progression of transaortic velocity is an increase of about .2 m/sec per year, so it appears progression is occuring rapidly. Given how quickly it is growing, while it may not technically be severe now, I think surgery ASAP is the best option. I’ve read that late outcomes are better with early intervention and once symptoms develop, mortality is substantial.

I am meeting with my cardiologist tomorrow to discuss. I will likely do a TEE sometime soon.

Valve selection:

The last time I came here, I was leaning towards the Ross. Reading more about the Ross Procedure in the past 6 months has only solidified my these thoughts.

One thing that was really enlightening to me was the use of different surgical techniques in order to reduce rates of re-intervention. The caveat here is that some of these techniques only have early and mid-term data available. While many techniques are newer, more established techniques have shown good long term results. 20% needing reintervention on either valve after 20 years (link below). Re-intervention is still significantly higher in the Ross than in the mechanical, but a lot has been done to address concerns about the relative contraindications of the Ross and these aren’t as much of a concern as they were a decade or two ago. I am aware that these results are limited to specialized centers, but I am considering only these specialized centers if I choose the Ross. I am also aware that even if I choose the Ross at an experienced center, I will need one or more reinterventions at some point, and these interventions may be invasive.


While this does really concern me, the data that I’ve read on life expectancy after the Ross overrides these concerns. Data for mechanical valves is all over the place. Some studies note that self INR monitoring restores normal life expectancy while other say it has some effect, but does not reduce bleeding and stroke risk to near the general population (link below). My biggest priority is restoring my life expectancy to normal, and most studies I’ve read indicate that the Ross does a pretty good job of that.


I just wanted to get everyone’s perspective here as I’m getting close to needing surgery. While I am American, I’m a government employee and have great health insurance, so the cost between procedures won’t be that much.

Thanks everyone,
Josh
 

dchrisc

chrisc
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Jul 11, 2022
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Washington state
Josh, depending on your situation, valve repair might be another option to consider. Your surgeon might have a better idea whether that is a viable option, possibly depending on the results of the TEE. With regard to Ross, opinions vary widely across this community but Ross seems to re-emerged as a serious option to valve replacement, based on what I have seen: on Heart Valve Surgery Resources for Patients & Caregivers
 

Josh-779

Member
Joined
Mar 10, 2022
Messages
9
Josh, depending on your situation, valve repair might be another option to consider. Your surgeon might have a better idea whether that is a viable option, possibly depending on the results of the TEE. With regard to Ross, opinions vary widely across this community but Ross seems to re-emerged as a serious option to valve replacement, based on what I have seen: on Heart Valve Surgery Resources for Patients & Caregivers
Thank you for taking the time to comment. I remember looking into repair, but I thought I had read that it’s an option for leaky valves but not stenotic ones. I will discuss this with my cardiologist tomorrow.
 

pellicle

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Hey Josh, my thoughts on this can be found (if you haven't found them already) , my vote would still be mechanical. Why make it more complex?

Based on what I've learned
  • St Jude
  • Good hospital
  • Self management of ACT
Best wishes
 

Timmay

Grandfather Clock
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Apr 22, 2022
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Location
Frederick, MD
Agree completely with pellicle. The Ross creates a 2-valve issue and guarantees that you will have open heart surgery again.

That said - YOU need to be happy with your choice. The last thing I want to see is for you to go mechanical and then later complain on this board due to any issues in relation to that. Own your choice ... in the short term AND the long term.

Nothing but good vibes toward you and your future. Truly. And we'll be here for ya no matter what you choose.
 

pellicle

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The Ross creates a 2-valve issue and guarantees that you will have open heart surgery again.
well only if you don't die earlier.

;-)

However, leap frogging this point:

And we'll be here for ya no matter what you choose.

I would say to @Josh-779 that in every way except one we are really not able to do more than (being somewhere else on the planet) give what amounts to "internet get well cards".

Once you pick a valve, you are committed to that like journey just like this kid:
1662669392951.png


nothing is in your hands and you know that the ride will end you just don't know how long it will last (even though the actual literature shows good indications and has a list of indicators).

Just like that kid I'd say most are not thinking about the end of the ride but only of the start of the journey.

This is the one point where a mechanical valve is very different (and exceptionally so for a younger patient): you know the valve won't fail.

1662671146539.png


The primary selection difference is that with a mechanical valve you trade valvular heart disease for the specific type of "prosthetic heart disease" which is managed by medication. All other types of "prosthetic heart disease" are managed by surgical exchange.

It is then with this difference we can actually help. Just as I've helped people via the internet, others can help others by providing guidance:
  • in practical methods of managing INR
  • reassurance that obstacles are not an impasse
  • in build confidence through knowledge
  • removing the fear (created by the darkness of ignorance)
I myself do what I can here and have even written a collection of articles for others (who may not be members here) to read and "bone up on the subject"

I recommend starting with this one:

which was written in 2014 (with few freshenups) and I know (from emails I have gotten) that its helped many "random internet browsers". My entire article list on the subject is here.

In this way we (the supporters) can do more than send get well cards and actively help overcome some of the harm done to the psyche by the (probably well intentioned but badly directed) medical system which promotes fear (which I hope is done to promote actions, but may not work that way).

I find that this picture often sums up not only what the medical system (including in the USA the ancillary profit focused and driven wing known as "health insurance") and patients seem to me to prefer

1662670297023.png


In the over10 years I've been here (and the over 40 years I've been a patient) I hear all sorts of reasons for choosing an alternative valve to a mechanical. Seldom is that backed by more than "hope to avoid AC Therapy".

I can only imagine that its a horror for a patient who makes such a choice to find them selves sitting before a specialist telling them "you'll need to commence anticoagulation" (for a variety of reasons like: the valve is thrombosing, you have a-fib, ...)

I understood that some patients avoid it right up to the 17 year mark, but to me they seem always to be people who were older (I'm meaning older than 40) at the time they had the surgery.

Lastly I find the statistical comparisons rather poorly done and flawed in a single way every time: they don't compare outcomes of mechanical valve patients who:
  • are motivated self testers
  • are keen to be healthy and take their health seriously in what they do
I mean its like adding in couch potatoes, fast food eaters and smokers to the mix and saying "this is the average".

So its my view that if you are serious about your health, look after yourself and want to have a hand in your own outcomes: get a mechanical valve.

Best Wishes
 

Croooser

VR.org Supporter
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Apr 21, 2021
Messages
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I am no expert - just another "graduate" of OHS, but that valve area looks to be well within moderate. Some of us have maintained a satisfactory lifestyle with no issues at all for many years with AVA in the 1.0 - 1.5 range. There are some graphs available which show that the risk of surgery vs the risk of waiting is well defined. I believe that the general rule of thumb is that a person becomes a candidate for surgery at AVA of <1.0 and/or aneurysm of 5.0 unless there are other compelling factors such as severe symptoms.

By all means, consult with a cardio that you trust.

BTW, in my own experience, there is some small variation in test measurements. However, from 4.1 to 3.7 seems excessive to this layperson. At a minimum, if it was me, I would get another test at a different facility to ensure that the test results valid.

YMMV
 

Superman

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Grand Rapids, MI, USA
Welcome back. I guess the first question that pops into my head is whether anything actually changed, or was the CT scan just a more precise measurement? Forgive my ignorance, I just don’t recall if the March test was an echo or something else. I’m also guilty of skimming longer posts.

Echo’s do have a greater margin for error than a CT or MRI will. In my case, the echo showed 4.3 cm’s and the CT showed 4.9 cm’s. It was 12 years ago and I had surgery done to fix it.

As far as life expectancy, it’s just an average. The secret to long life is good genetics and accident avoidance.
 

Josh-779

Member
Joined
Mar 10, 2022
Messages
9
Thank you for your replies. The test done in March was also a CT at the same facility. The cardiologist recommended surgery based on the speed at which the stenosis was progressing, as well as the prescence of symptoms although those symptoms were mild.
 

pellicle

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Hi
...although those symptoms were mild.
excellent. So you now have significantly more time to think about what you want.

As a researcher myself I would say this to you: seek to find the truth, not validation of your existing position. Expect to change your mind about what is correct at least once more.

Apply the following midset to your process

Critical thinking

“It is not so very important for a person to learn facts. For that he does not really need a college. He can learn them from books. The value of an education in a liberal arts college is not the learning of many facts, but the training of the mind to think something that cannot be learned from textbooks.” Albert Einstein
(Frank, 1948, p. 185)
At university you may be instructed to consider, justify, reason, argue, critically appraise, identify, analyse or evaluate. Such instructions provide you with the opportunity to engage your 'critical spirit' and practise your critical thinking skills.
Monash University wants you to be a critical and creative scholar and employers demand employees who possess critical thinking skills.
But what does critical thinking mean, and how do you do it?
Answering these questions is the goal of this tutorial. You will start learning how to train the mind to think by deconstructing critical thinking and its processes.

What is critical thinking?

Critical thinking is not about being negative. The term critical comes from the Greek word kritikos meaning discerning. So critical thinking is a deeper kind of thinking in which we do not take things for granted but question, analyse and evaluate what we read, hear, say, or write. It is a general term used to identify essential mindsets and skills that contribute to effective decision making. While there are many definitions for critical thinking, here is one that covers its essential aspects:
Critical thinking seeks to identify reliable information and make reliable judgements. It encompasses mindset and skills, both of which can be developed through an understanding of key concepts, practice and application.

What mindsets and skills do critical thinkers possess?

With respect to the first question above, you may respond by describing critical thinkers by the mindsets they possess. These could include being:
  • 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 zealous dedication to reason, and a hunger or eagerness for reliable information” (The Delphi Research Method cited in Facione, 2011, p. 10).

Best Wishes
 

tommyboy14

Active member
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Mar 17, 2014
Messages
35
Location
London, United Kingdom
Hello and welcome,

there is now an alternative to Ross, which does not involve two valves. It is called the 'Ozaki' operation and is performed in the US at the Cleveland Clinic. In this surgery, the surgeon constructs a new valve from the pericardium around your heart. The results from Japan, where this operation is in use since 2007, suggest that it can be a long lasting procedure. Since they use your own tissue, this is much less likely to calcify. However, we only have around a decade of experience with this surgery and the Brmpton is currently running a trial to see if this is any better than a standard tissue valve.

With respect to the Ross procedure, this is something that I have researched extensively when I was due for my first AVR in 2014. Professor Hans Sievers in Germany, the leading Ross surgeon at the time, advised against it since I also had a dilated aortic root. He said that even if they do the root replacement approach, if you have a dilated aortic root at surgery, the ross will eventually fail. So I ended up going with a tissue valve in 2014, and now in 2022 have had a reoperation for a mechanical valve, with testing at home.


The Ross can be an excellent operation for some people, but there are a few issues to be aware of. The results are highly surgeon specific. I personally wouldnt go to a surgeon who hadnt published data for at least a decade (When I saw prof Sievers, he had 14 years worth of published, peer-reviewed data). This is a two valve operation, so you will need eventual reoperation on both valves when you are older. The problem is that both valves dont fail at the same time, so you are possibly looking at at least two more reoperations after your first operation. There is also the TAVI option, and I was told that would be a possibility after my first tisse valve operation, but my valve failed in a way such that this wasnt possible.



In the case of Arnold Schwarzeneggers Ross procedure, the surgery failed the next day. Please see his interview below.



So he needed two heart surgeries in a row. Then his homograft failed in 2018. Another surgery. Finally, they were able to redo his aortic with TAVI (non-invasive) in 2020. It is of course uncertain how long TAVI will last in him, as he is only 70, he may still need another procedure down the road. So he had four heart surgeries so far, and he was 48 when he had the ross. I think that his example shows that even if you have an incredible amount of money and access to the best surgeons in the world, this procedure can still go quite wrong.

Having said that, it is the only tissue valve operation that has been show to last over 20 years in 80% of young people (I.e. below 50). In your case, I would do your research carefully and you may want to discount those academic papers which are so incredibly enthusiastic about this procedure. Most of them do not have 20 years follow up. Those that do show that reoperations are more common than you think.

If you want to get a tissue valve, you may want to consider the the Inspiris resilia valve. It is predicted to last 25 years and it is desgined such that TAVI will always be possible. Obviously if you get the same amount of warfarin free living out of a Tissue valve, as out of the Ross procedure, no one is going to want have a ross done anymore, because why have a two valve problem, when the result is the same as a standard tissue valve.


Finally, you mention long-term prognosis. Now I know that many papers claim normal life expectancy after Ross compared to a mechanical valve. But this is comparing apples and oranges, because less than 1% of heart valve patients has the ross procedure. Ross candidates are normally the healthiest patients, where as mech valves are done on anyone.

Please have a look at the data from the German Ross registry, the most comprehensive dataset of patients under going this procedure to date:


They say: Freedom from reintervention was 61% at 25 years and survival was 75% at 20 years.

You can make up your own mind this freedom from re-intervention or survival are something that is a) acceptable to you or b) in line with the general population.

Again, I think that the Ross can be a great operation, but it has its own flaws as you can see above. Good luck in your decision
 

Superman

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Oct 2, 2009
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Grand Rapids, MI, USA
Excellent write up, @tommyboy14. Big picture for these decisions is that as of now there is no, “Get Out of Jail Free” card. If there was, everyone would be choosing the same thing. Reality is all options have positives (replace a bad valve) and all options have negatives. Lifetime of warfarin. Potential for another replacement depending on age. Etc.

For me, I find basing the decision on the least unpleasant long term consequences to be the best way to approach. And this answer is very individual.
 

pellicle

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. Big picture for these decisions is that as of now there is no, “Get Out of Jail Free” card. If there was, everyone would be choosing the same thing.
my way of saying this is perhaps more verbose but then I'm paraphrasing from the literature
there is no definitive cure for valvular heart disease, we exchange valvular disease for prosthetic valve disease.

This involves choices. Its actually in understanding properly the implications of each choice that the answer to "which" becomes clear for us. Its important to come to understand these things by reading, not come to support our first pick by reading.
 
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