Longest period known before aortic valve replacement needed

[CAG12345]

I was diagnosed in March of 2023 with moderate, no symptoms, routine GP visit sent me to a cardiologist. Eight months later, it was another echo and they diagnosed it as severe. I waited another year (insurance reasons) and based my decision on the tesst results; pressure in that chamber was ever increasing. Advice from everyone I brought it to was don't wait until you are symptomatic; and end of July had a mini-AVR...still wasn't symptomatic...so woke up feeling worse than when I went in.

Best advice I've seen in here was from Pellicil, monitor the test results...no need in doing any further damage that "might" not be able to be undone.

PS I'd had my bicuspid murmer since childhood...the stenosis...I don't know when that actually began. Best wishes to you.

Thank you very much for sharing your staging of diagnosis dates and when had surgery and whether had symptoms. I am hope that your recovery from surgery went well and you really well now

 

[dornole]

I had mitral stenosis, not aortic and had a balloon-based repair in 2002. I stayed at mod or mod-severe for 22 years before becoming severe and symptomatic again this August and proceeding to MVR surgery on Oct 16. I was told that that only 3% of patients got 20 years from a repair so I was quite lucky it lasted so long.

 

[CAG12345]

Thank you. I am glad your first repair lasted so long.

 

[Beach77]

About age 30-34 one doctor heard a murmur, I declined for follow-up to keep it off my charts. At age 50, asked for an echo/stress test because of family history and the murmur (that no other doctor had heard). My bicuspid valve was diagnosed, with mild to moderate stenosis, was told to follow-up in 10 years. Twelve years later had moderate to severe stenosis. 2 years later it was severe with some symptoms. It was difficult breathing going up stairs/any elevation gain, walking up small hills. My valve was replaced @64. Total 14 years from the knowledge of the bicuspid w/ mild/moderate stenosis to severe.

 

[CAG12345]

Thank you very much for sharing your timeline with me.

 

[AZATADINE]

Well I knew for as long as I can remember.... doctor picked up a murmur when I was around 3 or 4 I believe. I've always known and was asymptomatic all the way through to 52....no symptoms whatsoever....had yearly check ups all my life and it never changed until 3 years ago when it narrowed significantly over a year....still felt asymptomatic at that point but it was time to whip out my old valve and throw in a new one.

Edit, actually 3 years post op on Nov 4th

 

[Chuck C]

I don't know that knowing about his bicuspid valve would have really changed anything though. It may have made his parents more protective and not let him participate in certain activities. That would have been sad.

I think that sometimes it is better not to know, at least in the early stages, before there is stenosis, or when the stenosis is just mild. Mine was diagnosed when I was 52, just 21 months before I needed surgery. I was able to live a normal active life. Had I been diagnosed early, there might have been restrictions that my parents and doctors would have placed on me.

 

[SatoriFound]

I think that sometimes it is better not to know, at least in the early stages, before there is stenosis, or when the stenosis is just mild. Mine was diagnosed when I was 52, just 21 months before I needed surgery. I was able to live a normal active life. Had I been diagnosed early, there might have been restrictions that my parents and doctors would have placed on me.

Yep. My husband's was diagnosed 18 months before he was at the point of needing surgery and 22 months before he had surgery.

 

[Philosophunculist]

Just one more vote in support of pellicle's advice...

It all just varies. My best advice is just monitor and follow the data for you. Make peace with not knowing and live each day

and I'm a real world example of what Chuck C mentioned.

Had I been diagnosed early, there might have been restrictions that my parents and doctors would have placed on me.

I was diagnosed at 10 with BAV and no stenosis...However the cardiologist gave a graphic description of aortic dissection to my mother and there was no turning back and no way a second opinion was going to unring that bell. She convinced my mom that just about any competitive sport would be life threatening...
Once I was an adult, and moved on to other cardiologists, they all said the same thing: no restrictions and the worst thing anyone could have done was try to restrict me from competitive sport and any activities at all..oops.

My stenosis crossed over from mild to moderate in my 30's (with no restriction on my activities).

In my late 40s it went into the moderate/severe zone and I stopped doing anything that wildly increases blood pressure (dead lifts for max weight, weighted pull-ups etc.).

And the last few years it has been severe but I haven't had any symptoms or restrictions until a couple months ago...As a percentage, my valve narrowed more in 5 months between April and September than it had in the last 15 years...

Now ill be heading into surgery sometime in the next few weeks...the only 'symptom' i ever noticed was 'exercise intolerance' that wasn't really intolerance, it was really just a lack of certain sorts of improvement in fitness given the amount of exercise I was doing....That said, I imagine it is entirely possible that after surgery I might say, "Oh wow, I didn't realize how much more tired I was or how terrible I was sleeping etc".

The moral of the story: There is literally no reliable way to tell how it will progress. And it certainly isn't linear. You may make it to 75 or it may get worse quickly. Find a cardiologist you trust...Get a regular echo...live your life...and maybe give up on dreams of breaking the world record in the deadlift.

Hope that self-indulgent ramble was of some use .

 

[pellicle]

I think that sometimes it is better not to know, at least in the early stages, before there is stenosis, or when the stenosis is just mild.

I agree ... I mean if there is no impingement on what you are doing then there is nothing wrong.

Its like "thinking there is something wrong with your car" and rebuilding the engine at a huge cost only to find there was nothing wrong.

I mean there is almost always "something" that isn't perfect; but if it isn't causing any damage then don't worry about it.

This of course implies "if there is a problem" get it looked at.

People are often really bad with working out how to live their life if there is something slightly wrong. Some creatures just can't leave things alone when they know something (minor) is wrong

so yes, not knowing can be better if there really isn't anything causing problems.

 

[Eva]

I have been trying to research the best case scenario of how long with asymptomatic moderate aortic valve stenosis anyone has gone before needing valve replacement?

I don't find alot of research data on this...just avg time to death if no surgery and symptomatic and severe.

Would appreciate anyone's input from research and data they have seen and personal experience as well.

Thanks, everyone!

To my best recollection in brief: started in 1970, surgery was in 2008.

Early 1970: age 19. Heart murmur was detected.
Late 1970: Aortic insufficiency — no symptoms
1986: age 35. Mild aortic insufficiency — No symptoms
1992: Moderate aortic insufficiency and severe mitral insufficiency and stenosis. Still no symptoms. Was still active with sports.
2002: age 49 Both valves became calcificied. Still I managed very well.
2006: Started slowing down a bit. Severe calcification in both.
End 2006: Increased fatigue with decreased quality of life until surgery In September 2008 at age 57.

Note added after post: I stopped all extreme strenuous exercises…continued going to gym, swimming, walking but nothing that *tired* my heart to the max. Every year, cardiologist encouraged me “to continue doing what I was doing” since there was no major deterioration until 1997!

 

[CAG12345]

Just one more vote in support of pellicle's advice...


and I'm a real world example of what Chuck C mentioned.


I was diagnosed at 10 with BAV and no stenosis...However the cardiologist gave a graphic description of aortic dissection to my mother and there was no turning back and no way a second opinion was going to unring that bell. She convinced my mom that just about any competitive sport would be life threatening...
Once I was an adult, and moved on to other cardiologists, they all said the same thing: no restrictions and the worst thing anyone could have done was try to restrict me from competitive sport and any activities at all..oops.

My stenosis crossed over from mild to moderate in my 30's (with no restriction on my activities).

In my late 40s it went into the moderate/severe zone and I stopped doing anything that wildly increases blood pressure (dead lifts for max weight, weighted pull-ups etc.).

And the last few years it has been severe but I haven't had any symptoms or restrictions until a couple months ago...As a percentage, my valve narrowed more in 5 months between April and September than it had in the last 15 years...

Now ill be heading into surgery sometime in the next few weeks...the only 'symptom' i ever noticed was 'exercise intolerance' that wasn't really intolerance, it was really just a lack of certain sorts of improvement in fitness given the amount of exercise I was doing....That said, I imagine it is entirely possible that after surgery I might say, "Oh wow, I didn't realize how much more tired I was or how terrible I was sleeping etc".

The moral of the story: There is literally no reliable way to tell how it will progress. And it certainly isn't linear. You may make it to 75 or it may get worse quickly. Find a cardiologist you trust...Get a regular echo...live your life...and maybe give up on dreams of breaking the world record in the deadlift.

Hope that self-indulgent ramble was of some use .

Thank you. It was useful to hear your history and experience.

 

[JoeWanderer]

I was first diagnosed in 1999 totally by chance as far as I remember (there was no murmur to be heard but since it was the first time I was doing a check-up, the doctor ordered an echo anyway). I was 25 by then.

Since I haven't had stenosis (at least so far), I was never told to refrain from any activities. However, as I'm already at the "severe" level of regurgitation, I have to check back for new exams every six months. In retrospect I guess it might have been better if I didn't know, specially because the messaging from the doctors is all over the place - once, when my regurgitation was still mild, one doctor performing the echo told me I was close to the threshold for surgery and this was like 10 years ago. On the other hand, the first doctor who detected the problem also mentioned that I would only need to worry about the issue in my sixties (and reading this forum makes it clear that the progression varies so much among people) while other said I shouldn't worry because valve technology would improve (I don't think it has, at least for my scenario). So this lack of consistency is very frustrating ...

 

[CAG12345]

I was first diagnosed in 1999 totally by chance as far as I remember (there was no murmur to be heard but since it was the first time I was doing a check-up, the doctor ordered an echo anyway). I was 25 by then.

Since I haven't had stenosis (at least so far), I was never told to refrain from any activities. However, as I'm already at the "severe" level of regurgitation, I have to check back for new exams every six months. In retrospect I guess it might have been better if I didn't know, specially because the messaging from the doctors is all over the place - once, when my regurgitation was still mild, one doctor performing the echo told me I was close to the threshold for surgery and this was like 10 years ago. On the other hand, the first doctor who detected the problem also mentioned that I would only need to worry about the issue in my sixties (and reading this forum makes it clear that the progression varies so much among people) while other said I shouldn't worry because valve technology would improve (I don't think it has, at least for my scenario). So this lack of consistency is very frustrating ...

Thank you for sharing your history and experience.

 

[danielwoz]

Doctors heard it (in a time of unrelated medical stress) when I was 18... Had my BAV replaced when I was 42 after reasonably significant events (crazy rapid heart rates and AFib) weeks before. In some ways I was lucky though, there was no significant aortic aneurysm from the non-optimal valve.