Hello Fellow BAV Repair Peeps

[minpin]

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.

 

[pellicle]

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

 

[minpin]

Hi and welcome


I was very young when I had mine, it lasted about 18 years

Thank you for the welcome! May I ask the reason was for your valve’s failure?

 

[pellicle]

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.

 

[minpin]

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.

 

[tom in MO]

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.

 

[minpin]

Thank you Tom. So far so good and I am optimistic about the future

 

[Survived03]

Please see my recent response related to your request. Let me know if I can help.
https://www.valvereplacement.org/th...-root-aneurysm-bicuspid-valve-surgery.889620/

 

[pellicle]

. I am just trying to learn why repairs fail eventually

Short simplistic answer is "they are small, delicate and not do no like being touched or cut. Scar tissue forms and that leads to early calcification.

 

[tommyboy14]

My understanding is that the probability of a repair failing is like 1-2% per year. So if you take 1% (2% were earlier studies), there is a 70% chance this was your last operation.

 

[Survived03]

My understanding is that the probability of a repair failing is like 1-2% per year. So if you take 1% (2% were earlier studies), there is a 70% chance this was your last operation.

tommyboy, do you happen to have a publication supporting this statement? I would love to read it. Thanks in advance!

 

[minpin]

Please see my recent response related to your request. Let me know if I can help.
https://www.valvereplacement.org/th...-root-aneurysm-bicuspid-valve-surgery.889620/

thank you! i am very grateful for you sharing your experience!

My understanding is that the probability of a repair failing is like 1-2% per year. So if you take 1% (2% were earlier studies), there is a 70% chance this was your last operation.

i hope so!!

 

[sam]

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/

 

[tommyboy14]

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.

 

[minpin]

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/

Thanks for the pointer, @sam. They also lump calcification with fibrosis, the latter term being one I am not familiar with in this context.

 

[pellicle]

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

 

[pellicle]

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

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:

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):

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.

 

[minpin]

Hi. I appreciate people responding to me when I first came here. I did take time and read a bunch of papers, but didn't have time to make my way back here. I didn't see that many people with bicuspid aortic valve repairs on this forum — maybe I didn't look hard enough, though.

Before surgery, I was pretty trusting in my surgeon. I was not online, so not aware of all the various communities like this one, where people discuss the pros and cons of various options. Repair, as presented to me, sounded like the best of all options: native valve, lasts a long time, no drugs.

My general feeling now is that if I had to go through the process again, I would have insisted on a mechanical valve. The best chance of one-and-done was my highest priority. I now know that's not necessarily the case for me, and is something I will have to monitor.

I think some questions I did not ask but would ask, were I going through it today:

- What is your understanding of the best practices for this procedure?
- Have you been trained on these best practices? Where, and by whom? How many of these have you done? Any reoperations?
- Will you be using these practices on me? If not, why?
- How will that potentially affect the durability of the repair?

(It's left as an exercise to the patient, I guess, to figure out what the best practices are at that time, and if the rationale for what procedures are being done are good ones.)

I sort of don't want to be practiced or experimented on… I would rather have gone with the tried-and-true mechanical valve.

Also, it's been almost 9 months from surgery. I run a few times a week, and still feel like I'm not getting enough air a lot of the time. I do wonder if I would perform better if I had a mechanical tricuspid aortic valve, rather kept than my repaired-but-still-bicuspid aortic valve. I look at pictures like this one, and think, dang, I wish I were getting that much more throughput.

I'm not anxious about the future — what's done is done, and now just rolling with it & living my life. If I need another surgery in the future, I'm fine with that — just hope I have good insurance at that time and am still healthy. I am sharing just as a data point.

 

[Survived03]

Well you might want to focus on living and getting your last surgery, 9 months ago, behind you. Enjoy knowing you had a life saving procedure and a cool scar. Honestly, I was in your shoes and searching data for almost a year post surgery trying to determine how long I would live. One day I just decided to stop. I pushed it way back in my brain and kept up with annual echos as my guardian. I got 20 years out of my native bicuspid and was pretty happy with that. Who knows, you may go a lifetime. Physically I didn’t feel restricted to a point where I felt I was missing out. Enjoy your life. If you have questions, please do not hesitate to reach out to me.

 

[minpin]

Hi, Survived03. I am not sure what I said that indicates that I am not in fact living my life and moving on. In fact, I said the opposite!

I haven't been online much, and thought I should return out of gratitude for the pointers to research papers I had not found on my own (and a few other papers linked to those). It took a while to digest them because, you know, living my life. I haven't seen much discussion about the pros and cons of repair, or heard the long term experiences of many people — you and AZDon here are two of the few. This thread, which you contributed to, had some good info.

As I said, the best possibility to avoid reoperation was my highest priority. (This is for myriad personal reasons — the physical aspects of recovering from another OHS being far from the top of my list.) A related point is avoiding possibility of a long period of degrading valve performance, through either stenosis or regurgitation, which may eventually happen, as my valve is still bicuspid. I was very symptomatic for quite a while prior to surgery, and strongly wish to avoid that cycle.

I expressed my preference for a mechanical valve to my surgeon. Then, about a week before my scheduled surgery, repair was offered to me. I accepted, even though I hadn't done any research on repair; prior to that, I did not know repair was an option on the table. I have only recently been doing the kind of research I should have done prior to making that decision. Given what I have learned about the current best practices for the most durable repair and my knowledge about my own procedure — well, I have questions at minimum.

I am grateful to have more knowledge about potential outcomes. I am still positive, but I coming from a more realistic and slightly more informed point of view.

I am happy for you that you were pleased with your outcome.

Best Wishes.