How serious is this diagnosis?

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sheryl wally

I was recently surprised to learn that I had a heart murmur. I had been told for years that I had mitral valve prolapse but this appeared to be different.
I was told I needed an echocardiogram which I had done a week and a half ago. My doctor called to tell me that I have probable bicuspid stenosis and will need another echo in April. I am 52 years old and don't know what to make of all this. Why wouldn't the echocardiogram give me a more definative diagnosis? How concerned should I be? I've done some research on the web and now know what these terms mean but still don't know what my prognosis might be. Anyone out there who has had an initial experience like this? Thanks for your reply.

Sheryl
 
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Hi Sheryl-

You will need a lot more information about just what your echo showed. If you don't already have it, request a copy of the actual echo report. You are absolutely entitled to a copy of it, and should have it for your files.

If you have a copy, post just what the echo measurements showed. We have many members here who can help you sort out all of the terminology.

You should also have a cardiologist on board who should spend some time with you telling you all about what the echo showed.

There are all degrees of stenosis and regurgitation, some need immediate help and some can wait until they get worse, and some stay the way they are for a while.

But get some more info. and we can help you. There are many members with bicuspid valves.

One thing to keep in mind is that there is wonderful help for all aspects of valve disease. It is a condition that there are many good fixes for, thankfully.

Best wishes.
 
Thank you Nancy

Thank you Nancy

Nancy,

Thanks for the advice. This gives me a place to start and I feel so much better to have found this site. I appreciate your reply. I don't feel so alone now.

Sheryl
 
Sheryl you are FAR from ALONE! We'll help you get things sorted out.

Welcome to our humble home! :D
 
Welcome. Stick around and you will eventually not only understand what is going on with you so well that you will converse very intelligently with your medical providers but will also be posting and helping others who will be at the place you are now.

Don't forget to visit our links to resources and also our REFERENCE forum. There is a wealth of information here. If you don't find something or you have a question come to mind then just post and someone will be back to you very soon.

Do call and make arrangements to get a copy of your echo report on Monday morning. It is a necessary step in today's world when your care will involve multiple people. It will help assure that you will get the most benefit out of each interaction with your doctors when you take an active roll in your own case.
 
Stenosis at 50

Stenosis at 50

It's a lot to adjust to all at once, but you're among a lot of people who've had to come to the same understanding with themselves, and truly understand what you're going through.

The difference between an electrocardiogram (EKG) and an echocardiogram (ECG) is the same as the difference between a house's electricity and its plumbing. The electrocardiogram measures the electrical impulses from your beating heart. The echocardiogram uses sonar to measure the fluid dynamics going on in your heart as it beats. It provides data to interpret the speed and amount of blood passing through the valves, the sizes of the heart's chambers, and thickness of their walls. It also generates a sonic motion picture of the heart and valves at work, including displaying any leakage or gross anatomical anomalies.

What's likely happening to you (but very slowly), from a nonmedical viewpoint:

When the upper part of your heart squeezes, your mitral valve allows blood to pass from the left atrium into the left ventricle, and keeps it from flowing back. When the lower part your heart squeezes, the aortic valve allows the blood into the aorta (which leads to the brain,the heart muscle, and the rest of the body), and keeps it from flowing back.

The mitral valve has two leaflets that open and close to the passage of blood. Mitral valve prolapse is when the leaflets of the mitral valve are not equally sized, or don't line up perfectly, so the mitral valve doesn't close tightly, and some of the blood going into the ventricle leaks back into the atrium (a.k.a. mitral regurgitation). Mitral valve prolapse is not often serious, and usually doesn't require any surgical action to be taken.

The aortic valve normally has three leaflets. In about 2% of the population, it has only two leaflets, or two of the three are smaller and fused into one. These are termed bicuspid valves. Of those with bicuspid valves, about 1/3 will present with significant problems over their lifetimes.

What usually happens is that a heart that's seemed fine all of one's life will suddenly start generating a murmur. One of the primary times for this to show up is in the early fifties. One theory is that, due to the extra wear they receive, the surfaces of the bicuspid valve leaflets begin to display a chemical signal that the body interprets as damage. The body then attempts to protect the damaged leaflet by coating it with a calcium compound called apatite. As this thickens, it makes the leaflets less flexible, and builds up on the bases of the leaflets, and at their edges to the point where they no longer seal properly.

So several problems are developing. One is that the calcium-coated valve leaflets are no longer flexible, and take more force to open, meaning the ventricle must push the blood harder to get it through. Another is that the buildup of calcium is narrowing the size of the opening that the leaflets allow when they do open. These things in tandem create the symptoms of aortic stenosis, which is usually simply defined as a narrowing of the aortic valve. In response to the body's request for blood, the ventricle now pumps harder and forces the blood through the inflexible, narrow valve opening at a higher pressure and velocity.

The other problem that's developing is that the calcium deposits, building up unevenly at the cusps and the leaflet edges, now cause the valve leaflets to close imperfectly. As well, the increasingly inflexible valve leaflets may not flex enough to fully close any more. These problems allow blood to leak back from the aorta into the ventricle (a.k.a aortic regurgitation). So, as things progress, the ventricle must work even harder to push enough blood into the aorta to fulfill the body's needs, as some of what it pumps out is leaking back in.

All these things work together to cause the left ventricle to enlarge, as any muscle does when it works harder. For a while, that allows it to overcome the problems, but eventually its size interferes with its efficiency. The growth also distorts the valve roots, which in turn increases the amount of regurgitation in both valves.

Where are you in all this? Well, there isn't enough information to hazard a guess from what you've posted. You could very well be years away from any action needing to be taken. However, this is a progressive situation, and you should understand that it will not return to normal without something eventually being done to the valve. There are currently no drugs, nonsurgical therapies, or exercises that can cure or reverse aortic stenosis.

At this point, it would be wise for you to collect your medical records and especially copies of your echocardiogram reports, both for your better understanding later, and for use in determining when you might want to exert pressure on your cardiologist to take action on your behalf. In the Resources Forum, there are also links to places where you can find information about interpreting your own echocardiogram report, to a certain degree.

Fortunately, there are good surgical fixes for the valve. If corrected soon enough, the ventricle will return to its normal size and the heart will return to normal efficiency. There are numerous replacement valves available for this purpose, including several brands of mechanical valves, porcine valves, bovine pericardium valves, and even valves from human cadavers. One of the recurrent themes on this site is discussion of the selection of a valve appropriate to the physical and psychological needs of those who are AVRs-in-waiting.

Take some time to get to know the site and read through some of the information available here. Ask questions as they come up. There are always people here who want to help you.

Be well,
 
You will probably get repeated echo exams for a while (usually every 3 to 6 months, depending on what your doctors say) which will help your docs assess how well your heart is doing and if there's any degradation in its performance.


Most of us get an echo every 6 months or a year. I'm doing it on on the bi-annual plan. Actually, I think I'm due for one, haven't called the cardiologist aobut it though, keep forgetting to... =)


Try not to sweat things too much. Answers will come. Take some time to do a little research on-line and ask whatever questions might come to mind, no matter how trivial or "stupid" they might sound.

We're all going through this stuff, some haven't had surgery yet, some have, some are getting more down the road... There's a LOT of experience here and a wealth of good information too.

Welcome aboard, you are by no means alone here. =)
 
Hey Sheryl

Hey Sheryl

Well to the club. I was born with a congential heart defect of the aortic valve, thus a leak called murmur. I had the valve replaced and no longer have the murmur, but no real guarantee that it won't come back. I was active for many years with the murmur. It depends on the severity of the leak in conjucntion with the condition of the heart, the other valves and arterties, the seriousness of your condition. The only one who can answer of how serious the setonsis is, is the doctor him/her self. Talk with the doctor and go over the test results. Ask questions to find out what is going on. Thanks for coming and come back anytime with any question. Good luck and keep us updated. :)
 
Re. Bicuspid Aortic Valve Disease

Re. Bicuspid Aortic Valve Disease

Hi Sheryl,

It is not unusual for someone to learn that they have this condition at your age and, as others have mentioned, you are not alone. Those at the leading edge of understanding this condition now view it as a connective tissue disorder of the body, its most serious affects found in the aortic valve, aorta, and often the mitral valve.

I am going to list some links here for you to review. Most centers are familiar with evaluating your heart valves and heart function. However, many are not aware of the aorta. It is important that you have your aorta measured accurately. You may either have an aneurysm or at least some enlargement to the aorta, and you need to know this. The links below discuss the diagnostic tests used for the aorta.

http://www.bicuspidfoundation.com
http://www.cedars-sinai.edu/aorta

Best Wishes,
Arlyss
 
Hi, and welcome to The Waiting Room -- that virtual room where many of us are waiting until the time comes for our own surgeries.

Like you, I lived a "normal" life until mid-50's when a doctor asked that fateful question, "How long have you had the heart murmur?" One thing led to another, and I got it evaluated. I will shorten the story (excluding the parts about the bum doc I first had, his treatment and firing) and get to the point. Bob H, I think, summarized the medical end of things very well (Thanks, Bob!). As for the echo comment of "probable bicuspid valve" -- mine says that, too. This is because they often cannot get a clear enough image of the valve cusps (leaflets) to be sure how many you have. They can see shadows, but unclear. The cardiologist who interprets the echo may add his opinion, as mine did, because the usual causes of aortic stenosis are rheumatic heart disease, old age, or bicuspid valve. If you don't have the first two, the usual culprit is the third -- probably. . .

There will be many other measurements taken and discussed in your echo report. The relative status of these will dictate how your cardio proceeds. In my case, my stenosis has been graded as "moderate" and we just do echo's annually to monitor it. I have no restrictions so far and have only one med for hypertension. Hope you get to start out easy, too.

Again, welcome, and read a lot. It will, I'm sure, help you as it did me.
 
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