Doc reversed the diagnosis

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rich01

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however he has the evidence presented by the surgery ... so while that's an interesting conjecture or thought experiment, its not the case.
What would a surgeon do if when he got to your aortic valve, he determined maybe it didn't need to be replaced?
 

pellicle

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What would a surgeon do if when he got to your aortic valve, he determined maybe it didn't need to be replaced?
Well I think its unlikely there would not be more and serious medical imaging done BEFORE surgery (such as a CT with contrast) as preparation for surgery. This would likely clarify things to a more accurate level than the mere ultrasound done by the first Cardiologist. If surgery proceeded and the valve was found to be perfectly healthy (I'd doubt that) then the surgeon would have his arse handed to him by the system. This may surprise you, but they can't just toss it in the bin and have the cleaner empty it. Well, maybe in India. They have to go to pathology.
 

Keithl

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I had cardio want me to get surgery for 2 year then surgeon said no. This year cardio said yes and surgeon agreed (as did I) once my aneurysm grew to 5.1 where the cardio wanted it done 2 years ago when it was around 4.7-4.9.
 

gregjohnsondsm

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I had almost the exact same experience. Cardiologist who had been monitoring me for 20+ years (with Echo tests) said I was 5 - 10 years, possibly never, away from surgery. 2 weeks later I was in NW in Chicago scheduling surgery. 1 month later removed very calcified valve and ascending aorta. I heard later from some theraputic nurses that some of the cardiologists have the mentality of waiting until someone is in the ER before taking action as opposed to more preventive / aggressive treatment.
 

Freebird

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I had exact similar situation! I lived in hell because of the different contradicting opinion.

After about 5 years, the very first doctor that my family hated for his diagnosis proved to be most brilliant. He was the first one who detected the my undetectable heart issue!
Note: you may just need another good echo with color contrast to put your mind at ease.
Also, though my valve was severe in my thirties. I had my surgery 20+ years later.

Good luck, enjoy your life, don’t let worry overtake your good energy!
I just discovered I have severe stenosis out of the blue about a year ago. I have zero symptoms. Are you saying you went 20 years in the state of severe stenosis, just watching it periodically on echos? What was the thing that made you determine to have surgery? I'd love it if I could just stay stable (without doing damage to my heart) for a few more years since I'm 58 and would need at least two more replacements.
 

Keithl

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I gather by thinking you will need 2 replacements you are leaning tissue valve? I am 58 and elected mechanical On-X becasue I don't want to do it again, even through the groin is not perfect.
 

Freebird

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I gather by thinking you will need 2 replacements you are leaning tissue valve? I am 58 and elected mechanical On-X becasue I don't want to do it again, even through the groin is not perfect.
Yes, I'm going with a tissue valve unless they discover some reason that I can't.
 

newarrior

Have mild AS live in Thailand
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I had almost the exact same experience. Cardiologist who had been monitoring me for 20+ years (with Echo tests) said I was 5 - 10 years, possibly never, away from surgery. 2 weeks later I was in NW in Chicago scheduling surgery. 1 month later removed very calcified valve and ascending aorta. I heard later from some theraputic nurses that some of the cardiologists have the mentality of waiting until someone is in the ER before taking action as opposed to more preventive / aggressive treatment.
I just got diagnoses with minor AS--though believe it was also diagnosed in 2010-yes both my American and Thai drs here in Bangkok are given me huge windows of up to 20 years or more before I need AVR
 

newarrior

Have mild AS live in Thailand
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I got diagnosed with mild (one reading just below moderate) the other mild; was told to get echos every 3-5 years. I will probably go with every years---AS is serious/life threatening and you do not mess with this disease
 

rich01

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I got diagnosed with mild (one reading just below moderate) the other mild; was told to get echos every 3-5 years. I will probably go with every years---AS is serious/life threatening and you do not mess with this disease
I went from mild to moderate in 1 year and then to severe in 1 more year.
 

newarrior

Have mild AS live in Thailand
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I went from mild to moderate in 1 year and then to severe in 1 more year.
OMG I have heard of such stories..How often were you given echos ? I wonder about that..one can go from mild to severe/needing AVR surgery in as little as 2-3 years..I am only 56 and this may have started in my 40's...
 

rich01

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OMG I have heard of such stories..How often were you given echos ? I wonder about that..one can go from mild to severe/needing AVR surgery in as little as 2-3 years..I am only 56 and this may have started in my 40's...
Yearly.
 

Keithl

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The interesting thing is mild/moderate/severe are hard to pinpoint with imaging. I was told moderate for years and when they did my valve in May the surgeon said the valve was very severe vs. what was diagnosed all these years.
 

nobog

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Actually Mild, Moderate, and Severe do have numbers assigned to them, as far as regurgitation goes:

Mild: < 30 ml/beat
Moderate: 30 - 59 ml/beat
Severe: > 60 ml/beat

So... if you have any of those numbers you would feel it, think of a 30 cc syringe - that's the volume of fluid that goes the "wrong way". This is also called backflow. They would typically not interfere until the moderate range.

For stenosis, they would get a pressure drop number (measured in mmHg) or calculate EOA (effective orifice area). Low pressure drop numbers = good. High EOA numbers = good. There are no "specs" here because we could be dealing with a 80 pound (sorry for you metric guys and gals you will have to convert :)) woman or it could be a 250 pound man.
 

Protimenow

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Freebird - I'm not going to tell you mechanical versus tissue -- but at 58, the likelihood that you'll need a procedure to replace a failed/failing tissue valve in your lifetime is fairly high -- depending on how much longer you live, and other factors. The likelihood that you'll have to replace a mechanical valve are negligible -- I won't say that mechanical valves aren't sometimes replaced, but the track record for mechanicals is exceptional.

If you're going mechanical to avoid the clicking (which you get used to) or having to manage warfarin - realize that warfarin isn't that big a deal. I've been taking it for 28 years, and many on this forum have been using it much longer. It isn't really a big deal.

If you're gambling that by the time your tissue valve needs to be replaced, a new technology will have been developed that can be done through a catheter - realize that this is still a gamble. Perhaps they'll have an improved TAVI procedure and valves, perhaps they won't.

By that time, maybe they'll have developed an anticoagulant that doesn't require dosage adjustment and weekly testing. Maybe they won't.

Maybe, by the time your tissue valve fails (all of this assumes that you'll be around long enough for it to fail), they'll have a better mechanical that doesn't require anticoagulation.

This is all a bunch of 'perhaps' and 'maybes.' What should be fairly obvious is that, at 58, a tissue valve may not make it without having to be repaired or replaced at some time in your life. Second (or later) surgeries are always more complicated than the first - scar tissue to deal with, adhesions, and other stuff make it more difficult for the surgeons.

I'm sure that you've thought very carefully about this -- but, if you're avoiding mechanical because you want to avoid warfarin, please think again. (One more thing -- there are other reasons that people take warfarin - if you develop one of the other reasons, you may wind up taking it anyway).
 

tom in MO

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I just discovered I have severe stenosis out of the blue about a year ago. I have zero symptoms. Are you saying you went 20 years in the state of severe stenosis, just watching it periodically on echos? What was the thing that made you determine to have surgery? I'd love it if I could just stay stable (without doing damage to my heart) for a few more years since I'm 58 and would need at least two more replacements.
Are you saying you went 20 years in the state of severe stenosis, just watching it periodically on echos? Watchful waiting is what those of us with stenosis of the birth valve do. Not sure what you mean by "severe," but that usually means it's time for replacement. They do not wait for symptoms. As Pellicle indicated, the change due to stenosis is not linear when it gets bad. It can change quickly. That's why it's echos every 5 years, every 3 years, every year and then 6 months. My stenosis was due to a bicuspid valve. I never made it past the every year and only had my first "symptom" after being told "get thee to a surgeon" based upon the echo.

What was the thing that made you determine to have surgery? My cardiologist told me it was time to schedule surgery. I asked him when should I have it, next week or in a few months? He said "best get it done within less than three months, you don't want to suffer the syndrome known as sudden death." That kind of focuses you. I saw the surgeon a few weeks later and he said "soon". I got it done in a little more than a month from seeing the surgeon. After removal, my surgeon said my AV was severely clogged and ready to quit.

I had mine done at 55yo. I chose mechanical because I'd had surgery 3 times before, now 5 times total. No surgery is a pleasant process and they all have risks. I've never had an operation that has been 100% successful, there's always something. The good thing is it's usually not too big of a deal, but I've had pain from my first surgery 25 years ago every day. I just don't touch that part of my body :) By the way, the metric for success for OHS is life, not quality of life. Take the statistics with a grain of salt.
 
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