Progression Time

[Nocturne]

How long did it take for your AS to progress to the point where it needed surgery?

I mean progression from an actual diagnosis of stenosis, not just bicuspid valve. It would help to know how bad your stenosis was when it was first diagnosed.

I'm curious who took the longest, and how long it took.

 

[Paleowoman]

Hi Nocturne - one of my docs has told me that when my murmur was heard that was the point at which there would have been a certain degree of stenosis. A doctor listening to my chest when I was 25 heard the murmur. Prior to that I remember a doctor listening to my chest/heart when I was about 20 but he did not remark on anything, so no murmur then. Obviously I was born with bicuspid aortic valve so that means that at some point between the age of 20, when there was no murmur, and the age of 25, when the murmur was heard, a degree of stenosis had developed. Presumably mild stenosis. I had surgery at age 60 so that means it took 35 years, or maybe a bit more, to get from mild stenosis to severe stenosis - in me. Everyone is different, there's no hard and fast rule for the progresion of stenosis.

 

[Nocturne]

Wow! It would be incredible if I were to progress that slowly! It looks to me like studies are showing an average of about ten years from mild to surgery, but that is highly variable.

I'm a bit of a unicorn (calcific AS with a normal tricuspid aortic valve at in my early 40s), so I think it's even harder to guess how long I'll be waiting. I suppose I'll know a bit more after a second echo -- not sure when that will be.

 

[epstns]

I think I noted this elsewhere, Nocturne, but my stenosis was mild to severe at diagnosis, and it still took almost 11 years to progress to the point where I called for surgery. We're all variable, but you will still feel the progression in that normal things will eventually begin to get harder to do. Just be sure you use an objective measure - not some "touchy-feelie" sort of thing. I kept a diary of my daily exercise performance (distance covered and time to distance). Once I saw my performance actually decline, I knew it was real and began to watch it more closely. It took a long time to get there, though.

I know this isn't easy, but try to just make a line in the sand, then go back to your life for a couple of years. Keep up your monitoring appointments, but try not to fret about it until something actually changes. There's nothing to worry about until there's something to worry about. You'll be fine for a long time. When things begin to change, you will have good notice. Who knows - by that time the whole world of heart valve replacement may have changed and today's worries may be non-issues.

 

[pellicle]

.... Just be sure you use an objective measure - not some "touchy-feelie" sort of thing. I kept a diary of my daily exercise performance (distance covered and time to distance). Once I saw my performance actually decline, I knew it was real and began to watch it more closely. It took a long time to get there, though.

similar here too ... I noted that my time and average (and max) HR on my ski tack sessions was degrading slightly (higher max, longer times around) despite obvious (less people laughing at me) advances in technique which should have led to a decrease.

Documentation is the key because you naturally have up and down days (or even weeks) and its important to not panic when yesterdays time was bad. These things take place on a longer time scale.

 

[Paleowoman]

Wow! It would be incredible if I were to progress that slowly! It looks to me like studies are showing an average of about ten years from mild to surgery, but that is highly variable.

I'm a bit of a unicorn (calcific AS with a normal tricuspid aortic valve at in my early 40s), so I think it's even harder to guess how long I'll be waiting. I suppose I'll know a bit more after a second echo -- not sure when that will be.

Nocturne - you have to remember that people with bicuspid are walking around not knowing they've got it. It's only when a doctor listens to a person's heart that it's heard. How often does that happen ? In the UK people don't get regular checks for anything. And it's only heard when it's beginning to be stenosed or everyone with bicuspid aortic valve would be diagnosed at birth - only those born with it already stenosed are diagnosed at birth . It was only when I had a chest infection that the murmur was heard. If I'd not had that chest infection (nothing to do with my heart) when I was 25 then I would have gone till age 53 before a doc heard the murmur from my BAV. Then I'd be saying to you that it was only 7 years from diagnosis to surgery ! Do you see what I mean ? Some people don't get diagnosed until a couple of weeks before surgery - it's not that they went from mild to severe stenosis in two weeks, it's just no doc ever listened to their chest till that point !

 

[Nocturne]

Oh, I get that, Paleowoman. That's why I asked where people were at when they were first diagnosed.

I was diagnosed at "very mild", which isn't even a term that exists as far as I know. Some of my markers are below the threshold for AS, but clearly too high to be normal -- I remember something like velocity across the valve being 2.3 M/s when AS is considered "mild" starting at 2.5 M/s. So my aortic valve must be a "squeaky door"!

I know the same doc who heard the murmur listened to my chest only a few months before and heard nothing, but my wife (who is a doc -- ped/hem/onc) pointed out that I had lost a lot of weight in the interim (maybe 30-40 pounds by that point) and that sometimes murmurs like that are hard to hear through fat.

Although I DO think I may have been hearing a murmur on my own for over a year previous -- I had noticed my heart "pounding" for a few minutes when I first lay down to sleep at night, and it was one of the reasons I sought out a doc when I turned 40 in the first place. He had heard nothing then and hand waved it away because "at my age" heart disease was very unlikely. I wish!

Today I hear the pounding in my heart still when I am laying down, but I recognize it as less of a pounding than a pronounced second beat after a pause. Like my wife's heart (and my memories of my own heart not so many years ago) beats like this:

"Boom-Boom... Boom-Boom... Boom-Boom..."

And my heart sounds like this:

"Boom...BOOM!... Boom...BOOM!... Boom...BOOM!"

As if it pauses for a moment before kicking open the "stuck door".

 

[Agian]

Mine sounded like Led Zeppelin's Moby Dick.

 

[Paleowoman]

Hi Nocturne - I don't think a patient can hear their own murmur ! The word "murmur' means the variuus sounds of the heart sounding different than normal. I was, and still am, used as a patient in an examination for doctors wanting to become specialists - they have to listen to my heart and describe the murmur they hear to the examiners and then work out what the murmur means. Here's a website on the sound of aortic stenosis murmur: Sound of Aortic Stenosis Murmur Sound

Here's what it says on a website for doctors about aortic stenosis murmur:

The pulse in aortic stenosis is slow rising and of a low-volume.
Theapex beatis usually undisplaced and heaving.
There may be anapical thrill.
The murmur is ejection systolic and radiates to the carotids.
(The second heart sound may be soft or absent)

You'll note it says the second heart sound may be soft or absent, that's because the valve is not shutting tightly due to the stenosis/calcifcation.

PS - the murmur now that I've had aortic valve replacement is extremely loud, presumably because the leaflets are snapping tightly closed ? A doctor once described my murmur as a "stonking loud murmur" , "stonking being a British expression meaning remarkable or exciting.

 

[FredW]

Nocturne,

First, keep in mind: everyone is different, progression varies with individuals, echo test results vary depending on many variables, and you pay more attention to your heart sounds once you know you have AO.

I first heard I had a heart mummer in 2007 when I was 64 years old. I had surgery last July, 2016 at age 73. I had a regular tricuspid valve, but later I found out, in my advance stage of stenosis, that two leaflets fused, giving some echo readings to question if I had a bicuspid valve. My valve area readings were as shown below:

Mar 2007 - 1.4 - "very slight AO"
Jan 2011 - 1.3 - "very mild AO"
Apr 2014 - 1.3 - "Mild AO"
Dec 2014 - 1.0 "moderate to moderately severe "
Jun 2015 - 0.9 "Mild to moderate ... Possible underlying bicuspid aortic valve. - Told to stop hiking 14,000 foot mountains
Jul 2015 (TEE) - "1.0 and 1.1 ... Tricuspid valve"
Dec 14, 2015 - 0.8 either "severe AO" or "moderate server" from two places in echo report
Dec 30 2015 - cath test results said 1.4 "moderate AO" and no clogged arteries".
(After this, I switched cardiologists)
Mar 2016 - stress test and echo test - "0.9" New cardiologist said to loose weight and that I was not ready for surgery but don't hike 14,000 foot mountains
Jul 21, 2016 - stress test showed serious condition on EKG, one that most people need shocked to get hart started again
my cardiologist demanded I have surgery immediately. Cat test that night showed one clogged artery.
Jul 22, 2016 - Surgery - replaced aortic valve and one bypass artery.

In my case, progression appeared to be slow from 2007 to 2014, then it approached the serious category when it came to valve area. However the other variables: gradient and ejection factor did not reach the serious category. In December 2015, I got so frustrated with the inconsistent results and doctors not giving me consistent answers, I switched cardiologist.

During 2015 and 2016, I was very concerned that I was serious but the numbers and docs did not agree. I stopped hiking 14,000 foot mountains, but I continued to be active around my home. In the back of my mind I kept hearing the statistics of "50% of serious AO patients die within two years, 75% in three years". I live in rural western PA, so getting fast care for an event is not possible. I monitored my heart closely and every evening I could feel and hear my heart struggling. Was it my imagination? Maybe, but maybe not.

The bottom line is, keep your own stats, ask questions, do research, and listen to your own body. However, don't fret unnecessarily or worry yourself to much. That is a fine line to walk.

My surgon told me that progession is about 0.3 cm per year, but that varies.

I know how much a PIA being in the waiting room is. I wish you the best.
​Fred

 

[Alchemist]

Hi Nocturne

You've asked THE question that has been perplexing me since my diagnosis of a BAV in July 2015. I'm finding FredW's 'statistics' a bit like a cold shower!
As recommended by Paleowoman, I've started to plot my readings after my echos and have included CT and MRI results. My cardiologist/radiographer has been puzzled and initially in denial, of my discordant readings.

At last month's echo consultation, he did admit to 'sharing' the data from my echos with interested colleagues.

I'm 57, fit and asymptomatic (bar a funny fainting turn whilst on holiday 2 months ago). My AVA is currently .95cm2 and 0.58cm2/m2 BSA the only other reading I have is 0.8cm2 GOA as my Cardiologist didn't 'believe' the initial echo reading he took originally in July 15. Again recommended by Paleowoman (Girl as she was then!), I recorded my Peak Velocity in July 15 as 2.68m/s and it is currently 3.7m/s. Whilst my Mean Gradient was 19mmHG in 2015 and is now 32mmHG.

I haven't enough data to see a pattern for the AVA progression. FredW's figure of 0.3cm per year I have come across previously, but only in relation to Tricuspid Stenosis.

I am sure Nocturne shares the sense that we all have 'In the Waiting Room' of limbo. I expressed this to my consultant and he has agreed that I'm in limbo, he doesn't want to put me forward for surgery, I must continue with my 6 monthly echos, a stress test, he says will not inform him any further, he just wants me to contact him immediately should I experience any symptoms.

My question is: Is my life on hold or do I make the best of this asymptomatic time and get out there and do the traveling and stuff I've been planning (
pre diagnosis)?

Wishing you well and a very comfy chair in the Waiting Room.

 

[Paleowoman]

My question is: Is my life on hold or do I make the best of this asymptomatic time and get out there and do the traveling and stuff I've been planning (pre diagnosis)?

I'd say deffo make the best of your asymptomatic time - keep as fit as you can, get in a good state of health.......and happiness.

 

[Jamieann]

I was born with a bicuspid aortic valve and moderate aortic stenosis in 1988. I went for check ups every year until I was 15 during which time it stayed about the same and when I was 15 was told I only needed a check up around every 3-5 years. Went for a check up when I was 21, and was told I was fine and holding steady, come back in 3 years. Well being young and stupid I didn't get another echo with a cardiologist until last year at age 27, so 6 years since the last echo. During those 6 years my stenosis became severe and I was told I needed surgery sooner rather than later, although I was asymptomatic. Looking back, I wish I had more frequent appointments so it wouldn't have been such a surprise but grateful I went in when I did.

 

[ashadds]

I went when I was 21 . There cardiologist was not concerned , I had the following echo results:
EF = 62% , FS = 34%
The most disturbing part of the echo was left ventricle LVIDd = 6.42 cm , LVIDs = 4.21 cm ....I was classified with mild - moderate borderline stenosis....Trivial regurgitation
I dont know when I am going for surgery , but the left ventricle size was not a concern to my cardiologist , and he classified me as normal with Mild AS. I am following up this december , I pray the LV size is normal in my current echo and stenosis is not progressed. I am currently 26

 

[epstns]

Today I hear the pounding in my heart still when I am laying down, but I recognize it as less of a pounding than a pronounced second beat after a pause. Like my wife's heart (and my memories of my own heart not so many years ago) beats like this:

"Boom-Boom... Boom-Boom... Boom-Boom..."

And my heart sounds like this:

"Boom...BOOM!... Boom...BOOM!... Boom...BOOM!"

As if it pauses for a moment before kicking open the "stuck door".

Nocturne - You may be hearing one of the attributes of your murmur. When you hear a stenotic valve, it makes a "whoosh" sound. The question or issue is where during the beating cycle the sound is loudest. If the peak sound is early in the cycle, it is termed "early-peaking" and is less severe. When the sound peaks late in the cycle, it is termed "late-peaking" and is more severe. That is because it takes the heart longer to force open the stiffened valve when the stenosis is worse. When the peak happens right at the end of the cycle, your heart may be at its limits of ability to pump out blood, and symptoms may follow shortly thereafter. You do have to listen very carefully, with a stethoscope, to really hear when the peak occurs.

 

[Paleowoman]

Hi Steve - have a listen to this: Sound of Aortic Stenosis Murmur Sound

 

[cldlhd]

I'm not sure a murmur always means stenosis. I was told I had a murmur way back when I was around 20. I had surgery due to my aneurysm 1.5 years ago a couple of weeks before I turned 46. Maybe the Doc who said he heard a murmur was just using the term generically in reference to my different sounding BAV. I forgot to add that at the time of my surgery I still had no stenosis.

 

[Paleowoman]

I'm not sure a murmur always means stenosis. I was told I had a murmur way back when I was around 20. I had surgery due to my aneurysm 1.5 years ago a couple of weeks before I turned 46. Maybe the Doc who said he heard a murmur was just using the term generically in reference to my different sounding BAV.

Mumurs are just different abonromal sounds, some innocent, some not. Here's a good article on wikipedia: https://en.wikipedia.org/wiki/Heart_murmur

My murmur of BAV was heard when I was 25 - a doc has told me that the fact it was heard then, and not before as in the case of some here who knew they had BAV when they were children, was because the abnormal noise doesn't happen until there is a degree of stenosis/calcification in th BAV. But I was 60 when I had surgery - took that long to get to severe stenosis.

And now I've had surgery the heart murmur I have is very loud - but it's not the murmur of stenosis, it's a mumur that some doctors (in their examination) think is to do with my mitral valve as it's a murmur which "radiates all over the pericardium" which mitral valve murmurs do - but there's nothing wrong with my mitral valve, it's simply that my prosthetic aortic valve is quite narrow so there's some turbulence and the leaflets are shutting tightly - like they're supposed to do - and that makes it all loud !

 

[jasond1979]

Thanks for writting this question because it is whats on my mind:
Went to doctor because I wasn't feeling well, heard murmur referred to cardioligist My current age 55

Did Echo 8-24-2015
AVA 1.2 cm2 AOV Max Vel 2.7 M/S No symptoms

Echo 8-29-106
AVA .9 cm2 AOV Max Vel 3.1 M/s Still no symptoms

When I ask my cardioligist Dr. Diggs here in San Diego he said that treatment for Aoritic Stenosis is symptom driven and can't give me a timeline when I will need a replacement but the longer I wait the better because of new technology. I go in yearly for an Echo and every six months for an electrocardiogram. I'm focusing on losing weight and trying to be as healthy as possible, just wish I knew when I needed to have it done. Reading something on line and when your Max Vel gets to be 4.0 m/s and above generally its getting time, and from what I can understand if your area is around .7 cm2 its getting time.

Again thanks for asking the question. Interesting note he said that my valve was born with a defect although doesn't know what kind.
I'm thinking its calicified pretty good.

Jason

 

[Superman]

How long did it take for your AS to progress to the point where it needed surgery?

I mean progression from an actual diagnosis of stenosis, not just bicuspid valve. It would help to know how bad your stenosis was when it was first diagnosed.

I'm curious who took the longest, and how long it took.

I was born with a strong murmur. Formally diagnosed with BAV and stenosis before I was a year old. Surgery to replace the valve 2 days before I turned 18. So I guess almost 18 years or around 17 years if you want to count formal diagnosis. I recall hearing of my condition as "aortic stenosis" long before I learned what BAV was.