I know few will agree with me, but I would not submit to something as invasive as OHS for a valve replacement if I were not having symptoms. I say this for several reasons. A few months ago after my annual Echo my interventional cardiologist told me that my aortic valve regurgitation had progressed from moderate to severe. I was quick to protest that assessment given the fact that I felt great, ran 4-5 miles every other day, and lifted weights heavily twice a week. I also provided him with documentation showing that over the 13 years since my MV replacement the aortic valve regurgitation had jumped around, back and forth, between mild and moderate, and now severe. Consequently, as I told him, I did not put much stock in this new diagnosis. My supposed fluctuating ejection fraction percentage is another story, although he admitted that determining the EF from an Echo is a rough estimate depending on the quality of the sonogram. He similarly acknowledged that the expertise, or lack thereof, of the cardiac sonographers could account for his inability to make a perfect diagnosis of valve regurgitation severity. S, we agreed that I would have a TEE to get a better look at my AV regurgitation. As you might guess by now, it showed my AV regurgitation as being moderate and not severe. It scares me to think that OHS is often performed on asymptomatic patients based on the results of a dubious Echo. Incidentally, my feelings about this have also been impacted by my experience with my electrophysiology "experts". I have had second degree heart block, Mobitz type 2, since my MV replacement and since then my HR drops to 30 bpm during the night, every night, consistently, with no ill effects or symptoms. Depending on which cardiologists, PA, or NP I speak to, I either need a pace maker immediately, or, I don't need one at all. I am going with the latter as long as my HR responds during exercise. I have never fainted and I don't have dizzy spells. I've decided that there are two kind of patients. Those who blindly do everything a doctor tells them to do, and those who take responsibility for their own health and quality of life.
50M, severe regurgitation, confused about symptoms?
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Fair viewpoint. In my view, the reason for getting surgery even when you don't have obvious symptoms is because by the time symptoms do occur, there may already be irreversible damage. With chronic aortic regurgitation in particular, even when severe, you can have full exercise capability because regurgitation becomes less severe as heart rate increases.
Also, sometimes it can be hard to tell what is a symptom and what isn't. My only notable symptom pre-surgery was fatigue and very frequent daytime napping. Was it due to the AR, or just due to insomnia and anxiety? Unclear, but it's safer to assume it was because of the AR. My surgery ended up being driven by my 5cm aortic root, but they replaced the valve too since the AR was very severe. My surgeon was surprised I was able to exercise at all.
According to the most current AHA guidelines, asymptomatic severe AR with an EF <55% is a Class I indication for surgery.
Trust but verify should be the motto, of good doctors and patients. It sounds like that's what you and your doctor did, so that's great. In situations where symptoms are absent, I think it's important to use multiple diagnostic methods to verify the accuracy of the data before making clinical decisions. Hence why they gave me a CT scan when something on my echo looked odd
pellicle
Professional Dingbat, Guru and Merkintologist
A very interesting post. It is rather an act of faith isn't it.
Happily (
) I have not been asymptomatic (except perhaps I just believed the imaging of my aneurysm) .Best Wishes
Teapotimus
Well-known member
I agree with your view and have followed much the same path. The first professional I spoke to was a surgeon and he tried to convince me to schedule surgery as soon as possible. A second opinion advocated watch and wait, though I later learned that Cardiologist also believed I was heading to surgery within the year. Truly the oddest medical appointment I've ever had.
Had I gone for the surgery immediately I likely wouldn't have accomplished everything I have for myself over the past few years, having used the diagnosis to completely reinvent my lifestyle. Still to this day I have no symptoms, in fact I feel better than I did before being diagnosed with severe AS and AR (now moderate and moderate/severe!!).
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IMO the thing with the heart is it doesn't respond with pain when overloaded, and it doesn't recover a lot after it is damaged, if any, so basically after surgery people live with what has left of their heart by the moment of the surgery.
Again, it may just stop with no ill effects... Not trying to scare you, just my unqualified thoughts.
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afraidofsurgery
Well-known member
Hi! I knew I had a 'murmur' since I was a kid, then had moderate to severe aortic regurgitation diagnosed in my mid 30's. I was very active, bike riding, some jogging, coaching gymnastics, etc, asymptomatic and had NO interest in surgery. So we watched and waited for about 10 years, I had a baby in there midway (monitored by my cardiologist). I was watched with echoes 1x or 2x/year, my cardiologist was watching for an increase in teh ventricle size OR symptoms. I made him graph my data and it showed a very slight gradual increase but again nothing dramatic. Of course the docs explained if one waits too long the left ventricle undergoes remodeling, dilation, and irreversible heart failure ensues. My left ventricle was dilated to 7.2-ish but ejection fraction was still good. I finally had symptoms being out of breath walking up stairs that triggered the surgery. I bounced back super easy and honestly I had adapted to the fatigue and perhaps other symptoms as I had the regurgitation so long I didn't notice a dramatic difference, I had adapted. But after the surgery I had more energy, my sleep was totally fixed (I used to have terrible problems waking up in the morning - I think perhaps I was a bit oxygen deprived!), could sprint and not get winded. I have a mechanical valve it's been absolutely perfect for me, no problems at all. In retrospect I might have gone for the surgery earlier but I was SO terrified of the open heart surgery. In reality, surgical heart teams are SO practiced and choosing a major medical center where they do these all the time made the surgery actually 'routine'. I agree with the opinions that sooner surgery is lower risk but I also recognize that it's valuable to be emotionally convinced and 'ready' as it's a commitment to get through strong and participate in the recovery. One also needs help around the house for a few weeks .
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But he's having symptoms; chest pain and dizziness.
JoeWanderer
Member
Exactly! And the chest pain has gotten worse in the last few weeks. One point to note is that (maybe due to anxiety) my blood pressure is all over the place. I know that can also cause chest pain, but I guess the final answer will come from the echo that I'll take on Monday. However, I'm nowhere near as fatigued as the reports I've been reading on the forum. It's just that chest pain is a scary thing for obvious reasons, and I wonder if I should refrain from exercising (or maybe take it easier) while I don't get all exam results.
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You don't want to wait until your symptoms become severe. Better to go into your surgery while you are still strong with a better chance of your heart remodeling back to normal.
pellicle
Professional Dingbat, Guru and Merkintologist
comparisons with a (non-)specific person on this forum that you
- don't personally know
- can't easily compare base lines with
- aren't making comparisons using quantitative measures
JoeWanderer
Member
I totally understand you guys! It's just that, way back then, I was told that the main marker for surgery would be that I'd start to get tired doing daily chores. This hasn't happened (yet), but I know my situation may be different because I'm somewhat fitter than average. But I'm getting used to the idea of the surgery - today, while riding my bike, I was already thinking on the kind of security measures I'll take to continue riding post op. I can only hope my fitness doesn't deteriorate too much with the new valve ...
Jack Julles Jackson
Well-known member
Hi there.
My sinthoms toke more than one year to be diagnosed. When it was, I made two echoes before scheduling my surgeon apointment.
In my experience, yes, you can get more opinions, but dont lose time!
And, notice: even that I had a SEVERE aortic stenosys with a very low area of opening and TWO FAINTS with hospitalization, one of the doctors who I saw told me to back to my home running, because he "desagree" of the diagnostic.
Resuming, yes, get more opinions, but DONT LOSE TIME. Inform yourself, but hear another people, read stuff. Because if you look too much you will find a crasy doctor who will agree with your desires even if that kills you. Nobody wants to go on a OHS, its scary. We do because we need.
Hope you find the right decision and it works.
My sinthoms toke more than one year to be diagnosed. When it was, I made two echoes before scheduling my surgeon apointment.
In my experience, yes, you can get more opinions, but dont lose time!
And, notice: even that I had a SEVERE aortic stenosys with a very low area of opening and TWO FAINTS with hospitalization, one of the doctors who I saw told me to back to my home running, because he "desagree" of the diagnostic.
Resuming, yes, get more opinions, but DONT LOSE TIME. Inform yourself, but hear another people, read stuff. Because if you look too much you will find a crasy doctor who will agree with your desires even if that kills you. Nobody wants to go on a OHS, its scary. We do because we need.
Hope you find the right decision and it works.
In my experience aortic stenosis symptoms are insidious. That, along with our mental capacity to accept what will be bound to happen sooner or later. Try not to let the mind cloud your safest decision. Focus on the results.
You got this!
You got this!
pellicle
Professional Dingbat, Guru and Merkintologist
depending on how "way back" then was diagnostics and the science around cardiology has moved on
JoeWanderer
Member
Guys, just a quick follow-up. I've just been to the cardio again after all my exams. The main measures of my echo were actually stable, ejection fraction is good at 67% but my left ventricle is at 66 mm, however it has been hovering above 60 since 2015. I did notice a change in the so-called "mitral fluxes" (E and A), which are considerably worse in this exam compared to 2023, but the doc didn't seem to make a fuss about it. All other exams (stress test, heart rate, blood pressure) are very good, apart from the BNP results, which had already caught my attention.
The doc hasn't given me a final word, but he said he'll talk to the doctor who performed the echo exam to get his opinion, as well as to the actual surgeon who might operate me when it so comes to pass. I'm now at peace (somewhat), in the sense that I know that I'll have to get operated in the near future, but different people are analyzing the data to reach for the exact timing.
As a side note, the doctor thinks that, after the surgery, I should run but no longer bike. I could have told him about the "Everest-climbing-with-mechanical-valve" case but maybe it's better to leave some things unsaid ;-)
The doc hasn't given me a final word, but he said he'll talk to the doctor who performed the echo exam to get his opinion, as well as to the actual surgeon who might operate me when it so comes to pass. I'm now at peace (somewhat), in the sense that I know that I'll have to get operated in the near future, but different people are analyzing the data to reach for the exact timing.
As a side note, the doctor thinks that, after the surgery, I should run but no longer bike. I could have told him about the "Everest-climbing-with-mechanical-valve" case but maybe it's better to leave some things unsaid ;-)
pellicle
Professional Dingbat, Guru and Merkintologist
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Thanks for the update Joe.
You have to expect them to err on the side of caution and there is always the CYA factor. Life involves risk. We individually need to decide what risks we are willing to take on and mitigate those risks the best we can with sensibility.
You have to expect them to err on the side of caution and there is always the CYA factor. Life involves risk. We individually need to decide what risks we are willing to take on and mitigate those risks the best we can with sensibility.
pellicle
Professional Dingbat, Guru and Merkintologist
I had no symptoms until after I was told I needed surgery and I got dizzy standing up once. I believed my doctors when they said it was time. After surgery, I asked the surgeon how bad my valve was. He said it looked bad and it would have failed in a month or two.
After surgery and 6 weeks of cardiac rehab, I was feeling better than before surgery. That's because over the years I had gotten used to the slow deterioration of my valve and didn't realize it was malfunctioning and how it was affecting me.
Before surgery, my literature search brought forward several people who had no symptoms but died from BAV stenosis. One young man was an enthusiastic runner with no symptoms, not even a murmer, who died during a run. They hold a memorial run for him now.
Those who wait too long to get their valve fixed don't post on the forums, because they are dead...
After surgery and 6 weeks of cardiac rehab, I was feeling better than before surgery. That's because over the years I had gotten used to the slow deterioration of my valve and didn't realize it was malfunctioning and how it was affecting me.
Before surgery, my literature search brought forward several people who had no symptoms but died from BAV stenosis. One young man was an enthusiastic runner with no symptoms, not even a murmer, who died during a run. They hold a memorial run for him now.
Those who wait too long to get their valve fixed don't post on the forums, because they are dead...
