Diagnosed with Bicuspid Valve. Strange symptoms

[carl1978]

Hello Everybody,

I am 36 years old, male, physically fit. I have just been diagnosed with Bicuspid Valve. EKG and Bloodwork all normal. I have some questions I hope that someone can answer.

I was diagnosed with High Blood Pressure 3 years ago which I was prescribed 20mg Lisionpril (ACE Inhibitor) which has been keeping it under control but I have never felt quite right post this diagnosis. I have been bothering my doctor every 3-6 months because of episodes of palpation's, breathlessness and dizziness. These symptoms come on after eating a meal of if I haven't drank enough water. Recently she sent me for a Echo and i was diagnosed with Bicuspid Valve.

I was expecting my doctor to tell me this is the cause of your problems but quite the opposite. My doctor has explained that my valve is functioning fine and this has nothing to do with the symptoms I'm having. I cant believe this and am now convinced my doctor is missing something. My doctor thinks my symptoms are due to Anxiety/GERD. I am anxious and am having therapy for this which is working.

1. Can someone tell me If the symptoms of Bicuspid Valve are constant? Some days I feel fine, other days the symptoms are severe.
2. Has anyone else noticed the breathlessness fatigue come on after meals?
3. When laying in the bath my stomach moves with pulse. Anyone else had this?

Thanks everyone for your input in advance. This forum is a godsend. It nice to be able to talk to people with the same problem.

Carl

 

[epstns]

Well, Carl, the first thing you should do is take a good, deep breath. Try to relax, just for the moment. It makes it easier to "hear" what we will be telling you. Really, I'm not kidding. It helps to relax a bit about all this "heart stuff" and learn, then you can decide how and when to react.

I will try to shed some light onto your questions, but remember that we're all different and may present symptoms differently.

A bicuspid valve may or may not ever present symptoms. Most bicuspid valve patients never need valve surgery. I've forgotten the percentage, but IIRC only about 25% of bicuspid valve patients ever need surgery. Just having a bicuspid valve may be just a factoid about your physical makeup. It may or may not mean anything more than observing its existence. If your cardiologist or doctor hears a heart murmur, they may then order an echocardiogram (ultrasound exam of the heart) to visualize the structure of the heart and measure the volume and velocity of blood flow through your heart. From the echocardiogram, the doctors can assess whether you have any valve conditions that may be causing problems.

IF your bicuspid valve is going to give you trouble, it can present in one of three modes. The valve can become stenotic (aortic stenosis), in which case the valve becomes calcified and the degree to which the valve can open to allow blood flow becomes progressively less. Or, the valve can become regurgitant (sometimes called insufficient), in which case the valve opens fully but does not close properly, allowing blood to flow backward into the heart instead of out to the body. And, the third permutation is that the valve can become both stenotic and regurgitant. Combine the descriptions to see how this one plays out.

For aortic stenosis, the "cardinal" symptoms are shortness of breath, chest pain or fainting. If a patient experiences any of these, he is instructed to contact his doctor asap, as they have found that once any of these symptoms present, the patient's life expectancy without surgery becomes greatly shortened (IIRC, statistically 2-3 years, at about 50% survival rate). Now, don't panic - the caution to contact the doc right away is for patients with confirmed aortic stenosis - not all bicuspid valve patients.

The short story is that bicuspid valves, of themselves, have no symptoms. There are only symptoms if the bicuspid valve has one of the conditions I mentioned, and that condition is bad enough to disrupt things. You may or may not have "classic" symptoms, or you may have "pre-symptoms." Especially in the early stages of valve disease, these things may seem to come and go. When things get worse, they seem to be more consistent.

Breathlessness and/or fatigue after meals may not have much to do with your heart. It is possible that if you have advanced aortic stenosis (as I had), your heart's ability to supply blood to your body may be so compromised that it is supplying just barely enough blood most of the time, then you go and eat a big, heavy meal. Your body automatically shifts more blood flow to your digestive system, starving the rest of your body. This can result in fatigue. The breathlessness could be related to insufficient blood supply (but personally I would bet not), or it could just be the impact of your full stomach pressing on your diaphragm and lungs, making you feel like you can't breathe properly.

As for the pulsating you see in the bath - how high up in your abdomen is the pulsing? I used to be able to see pulsing up way up under my sternum, about in the solar plexus. I think this is close to where your heart is located (cartoons have it all wrong), so it may be just normal movement. If, however, you are seeing pulsing lower down in your abdomen, I don't know. I would ask doc about that.

All said, I think you should try to formulate a list of your questions. Ask them here, but also make an appointment with a cardiologist to discuss them in detail. Bicuspid valves may not ever give you trouble, but if they do, you need to watch them. Mine was monitored for almost 10 years from initial diagnosis (of moderate-to-severe aortic stenosis) until surgery. During those years, I did it all - career, home, family, hobbies, travel. I just lived life until it was time to get it fixed. Then I hit almost every speed bump on the road to recovery, BUT I got over them and came back to life even better than before. Don't be afraid. Be aware, learn all you can, and manage your own situation.

And. . . Welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I spend almost 10 years as manager/host of The Waiting Room, and we work hard to keep it comfortable for others who need a quiet, calm place to come and learn of what is to come. Visit often, ask all the questions you want. People here have a wealth of knowledge and personal experience, and they are very kind about sharing it.

 

[carl1978]

Thank you so much for your advice and opinion. Its good the hear.

The pulsating I can see from the waist line to my nipple line. My whole abdomen moves not localised. Its not a lot but maybe 1-2mm in movement.

I had my echo at the heart centre at our local hospital by a senior technician. In his words "there is no need to be referred to a cardiologist as the valve and heart are fine". This I cant believe is true.

I'm trying to stay positive due to my anxiety but its tough. I have joined a gym which is helping reduce the symptoms alot. But I am going to keep hounding my doctor until I'm confident everything has been checked.

BTW I have never had an heart mummur and nothing has every showed up on a EKG (and I've had loads).

 

[cldlhd]

My ekg's have always been fine and I was diagnosed with BAV last March. I wonder what percentage never cause a problem. Probably hard to say because who knows how many people have them their whole life and never know if they don't give any symptoms.

 

[Paleowoman]

Hi Carl - I NEVER had any symptoms from my bicuspid aortic valve EVEN when it was time for me to have surgery ! I had surgery when the pressure gradient and valve area size indicated to my cardiologist and caridac surgeon that the time was right.

The murmur I had from my bicuspid valve was never heard until I was 25 years old, but since then it was always heard but I didn't need the valve replacing until I was 60 ! I had no restrictions on what I did all those years until the last few months when I was told to stop doing heavy weight training…I still did good weights though.

And I have NEVER had any abnormal EKG results, even the day before surgery ! Bicuspid aortic valve itself doesn't show on EKG, it's echocardiograms that show it and measure its effect on the heart.

I can often see my heart beat pulsating in my abdomen, I'm quite skinny so that's most likely why. I was also getting breathless, and often after meals AFTER aortic valve replacement ! I couldn't figure it out, neither could my cardioligst as I hadn't been breathless before surgery and now I was, but the echo looked fine. Turns out my breathlessness was due to a respiratory complaint.

Can you get a copy of your echocardiogram results ? Then ask your doctor to explain the numbers to you so that you understand it when she says your heart and valves are fine - despite having bicuspid aortic valve. I'm sure that would help you with your anxieties. But it's perfectly normal to feel anxious when first diagnosed, but once you find out more that may help you feel better about it.

 

[skeptic49]

. Most bicuspid valve patients never need valve surgery.[/I

I've seen this assertion before, but recent studies seem to be contradictory. From the Journal of the American College Of Cardiology, February 2013. Bicuspid Aortic Valve and Aortopathy: See the First, Then Look at the Second
Rosario V. Freeman, MD, MS; Catherine M. Otto, MD

A majority of patients with BAV disease will have disease progression requiring surgery over the course of their lifetime, most often for valve stenosis or regurgitation, with established clinical guidelines providing recommendations on optimal timing of intervention (10).

One of the points of the article is that the bicuspid valve itself is just part of the problem. BAV disease also has the potential to affect the aorta and root, as in my case, and surgical intervention may be necessary to correct an aneurysm, for example, even if the valve itself is still functioning.

 

[epstns]

That's interesting. . .

When I was diagnosed, all the way through the time of my surgery, several cardiologists and surgeons told me that the majority of bicuspid valve patients did not need surgery. Now the recent/current articles say otherwise. Anybody have access to any of the professional publications to see how the reconcile the change? Pellicle?

This strikes me as something we need to understand, in order to properly advise new members. I just don't have the access to resources (or the time) to research it and present.

Thanks for the update, skeptic.

 

[cldlhd]

Im not sure how they could know for sure. If some old bugger dies at 90 from some other cause they might not even know he had a bicuspid valve. Its like when the cable guy comes to your house, people only call to complain they get bad service if the guy does a good job people almost never call. So you only hear about the ones that cause issues unless they happen to catch one when you get an echo for some other reason.

 

[tom in MO]

The only scientific journal I read on BAVs not being treated was a study on death from BAV done in Italy. The ages ranged from ~17 to ~85 with the median age of death at ~55. The age I needed mine replaced and my surgeon said it was "shot". I did not really have any symptoms, only one dizzy spell.

Per "I had my echo at the heart centre at our local hospital by a senior technician. In his words "there is no need to be referred to a cardiologist as the valve and heart are fine". This I cant believe is true." Not sure why you do not believe the technician. I went 10 years with just one echo as a "baseline". Then my GP said lets do one to see, since it had been about 10 years. They saw stenosis and I went every year, then every 6 months and then surgery. Since your echo shows no stenosis or regurgitation, your problems are not related to the BAV. Based on your echo, someone (your GP?) should tell you when you need the next one, 1 year, 5 years, etc. I do not know about your country, but in the US, medical imaging technicians are not supposed to tell patient the results, this is left up to your doctor. Maybe you should consult with the doctor that ordered the echo.

Per your questions,
1. As epstns said, there are no symptoms of BAV. Your echo says you do not have stenosis or regurgitation, thus your symptoms are probably not due to you congenital heart problem.
2. In my case, I had stenosis and had no breathless fatigue. As epstns said, fatigue after meals can be a symptom of being human. That's why everyone sleeps in the parlor or TV room after Christmas dinner. Being breathless could be due to anxiety. Do you share your meals with someone who pisses you off? When my daughter was a teenager, meals could be a battle ground between mother and daughter, and I got nervous not even participating in their go around. Some people eat really fast and get heart burn or a bloated stomach, this could make you feel breathless.
3. Your pulsating stomach is probably because you are in shape or thin. I wish I could see things moving around, but I have always been too fat. Plus I shower, maybe you should stop the baths and shower instead...just a joke : )

I have a friend who is anxious and he can work himself up so bad that both he and the ER thinks he's having a heart problem when it is really anxiety. He spent a lot of money for tests that showed nothing. Now that he's off Ambien, he can still get a major panic attack, but it doesn't send him to the ER any more. Your doctor may be right that it is anxiety, but make sure it is not be exacerbated by something else.