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minpin

Member
Joined
Jun 10, 2024
Messages
9
Location
California
I just learned of this community. Hello!

I am 56F. Around this time last year, I learned I had a moderately leaky bicuspid aortic valve and a less moderate aortic aneurysm.

My leaflets were in good shape — no calcification. My surgeon repaired my valve, stabilized my annulus, and replaced the dilated part of my thoracic aorta.

I am doing well now — better than I have in many years for sure, and possibly better than ever in my life. I am running again (5K 2x or 3x per week) and go swing dancing a couple of times a week.

I did not know much about my condition or the procedure that was performed on me until after my surgery.

All of my learning has come from reading papers online and listening to medical podcasts.

I am here hoping to learn from others who have had aortic valve repair — what to expect in terms of my valve longevity, reoperation experience, lifestyle recommendations, or any other thoughts on bicuspid aortic valve repair.

My valve is still bicuspid — still learning what that means as well.
 
Hi and welcome

I am here hoping to learn from others who have had aortic valve repair — what to expect in terms of my valve longevity, reoperation experience, lifestyle recommendations, or any other thoughts on bicuspid aortic valve repair.
I was very young when I had mine, it lasted about 18 years
 
May I ask the reason was for your valve’s failure?
well the first time was "born bicuspid" and was "repaired" when I was about 10 ... I've since had 2 subsequent surgeries one to replace the repair, the other to replace thee replacement.

my site bio is here.
 
well the first time was "born bicuspid" and was "repaired" when I was about 10 ... I've since had 2 subsequent surgeries one to replace the repair, the other to replace thee replacement.

my site bio is here.
Thanks. I am just trying to learn why repairs fail eventually. It’s good to know that yours lasted so long.
 
I read a study of Italian BAV patients who died from BAV based upon autopsy. They ranged in age from 17-80 (I think.) The median was 55yo, the age I was for my replacement. So with a fresh "valve job" and an age of 56, you should do well.
 
I just learned of this community. Hello!

I am 56F. Around this time last year, I learned I had a moderately leaky bicuspid aortic valve and a less moderate aortic aneurysm.

My leaflets were in good shape — no calcification. My surgeon repaired my valve, stabilized my annulus, and replaced the dilated part of my thoracic aorta.

I am doing well now — better than I have in many years for sure, and possibly better than ever in my life. I am running again (5K 2x or 3x per week) and go swing dancing a couple of times a week.

I did not know much about my condition or the procedure that was performed on me until after my surgery.

All of my learning has come from reading papers online and listening to medical podcasts.

I am here hoping to learn from others who have had aortic valve repair — what to expect in terms of my valve longevity, reoperation experience, lifestyle recommendations, or any other thoughts on bicuspid aortic valve repair.

My valve is still bicuspid — still learning what that means as well.
There is a Mayo Clinic paper on why bicuspid aortic valve repairs fail. According to them, it is due to accelerated calcification of the bicuspid valve. https://pubmed.ncbi.nlm.nih.gov/32599047/
 
tommyboy, do you happen to have a publication supporting this statement? I would love to read it. Thanks in advance!
https://www.jtcvstechniques.org/article/S2666-2507(21)00104-8/fulltext

It says:
At 20 years, 69.1% of patients were alive and free from aortic valve reoperation, and the cumulative probability of aortic valve reoperation with death as a competing risk was 6.0%. The cumulative probability of developing moderate or severe AI was 10.2% at 20 years.
 
https://www.jtcvstechniques.org/article/S2666-2507(21)00104-8/fulltext

It says:
At 20 years, 69.1% of patients were alive and free from aortic valve reoperation, and the cumulative probability of aortic valve reoperation with death as a competing risk was 6.0%. The cumulative probability of developing moderate or severe AI was 10.2% at 20 years.
which is encouraging, but it also says at the start:
3 decades, and experience shows that patient selection and meticulous operative technique are crucial to provide excellent clinical outcomes and stable aortic valve function for decades.​
and
we believe that attention to certain technical aspects of this operation is key to a successful and durable aortic valve reconstruction

my bold

my concerns a these:
  • surgeons are not tesla assembly line robots and so not every surgeon is going to make that on every operation. (are you feeling lucky)
  • not every surgeon is going to be the best surgeon in the world (by definition)
  • the outcomes are touted but the limitations and restrictions are not made clear to the patient (as reasons why they may not get this outcome)
Lastly the linearity of the outcomes past a particular date are not laid clear and they use statistics to hide that by pretending that its all good up to 17 years (for instance) .. well what happens at 19 years? What if you're under 50 at surgery and you'd otherwise expect to live to 80's and you sort of want to enjoy your grandkids?

Just questions ... thanks for that study, it was an interesting read.


Best Wishes
 
to plagarise myself I want to mention the importance of error bars (or uncertainty) in statistics, because I really don't trust data without them (lies, bloody lies, statistics, politicians and maps). This is from a discussion about the following point:
This 68 page document has been 'co authored' by an impressively large committee of medical specialists. To wit

1718225431692.png


It being a committee, it would stand to reason that not everyone in that list totally agrees with everything. I mean even if you have a bunch of really good friends I'm sure even finding 100% agreement on something as simple as a date for a drink will be impossible.

Yet we see in the first paragraph:
1718225207426.png

so in my view one person required the statement about a dearth of randomised trials and another person gets their wording of "there is no difference at all"

So to make this clear they didn't write:
  • small difference or
  • statistically insignificant difference
they wrote "no difference at all" ... what's more interesting is that barely two pages later they present some graphs of their data. The analysis of this data will suggest that this assertion is 'shakey' at best and to any reasonable assessment of the data, wrong.

Of this graph (which I drew an arbitrary line on just prior to 10 years):
1718224954470.png

I wrote:
I thought I'd start with the age group of < 50 years old group because that's what I'm in (and the one which seems to have the greatest debates among people who are about to undergo a valve surgery).

I don't know about you, but I see differences there. What is more important is the first thing I see is 'variance' bars that are supplied at the ends of each of the data. Pericardial tissue prosthetics (I have coloured it over in green to make it clear) would seem to have the best results at first glance, however some things bear a closer look. Looking closely at Pericardial data we can see a remarkably noticeable change occurs in the survival rates at just before 10 years. Why is this so? I mean if you've ever chosen to plot a graph of statistical data you know that you get a cloud of points and its a matter of 'debate' where you put your "representative line".

Makes me really sit up and comb through their analysis to prise open the venetian blinds to see between the lines of what was happening.

I think this should be everyone's approach in reading studies.
 

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