Possible BAV? Opinions?

[Guest]

I'm a 28 year old female and I went to see a new doc just to get established and he said I had a murmur and that it sounded normal but wanted me to get a cardiologist opinion. I thought this was weird as 3 year ago I saw a cardiologist as I was having panic attacks, heart palpitations, and anxiety as I thought something was wrong with my heart. This cardiologist from 3 years ago listened to my heart and heard no murmur and he had me do a take home EKG for a day and found nothing significant and just said it was all anxiety related and after I heard that all my panic attacks, heart palpitations and anxiety subsided from how bad it used to be so it was all just anxiety related. I told the doctor I'm established with a cardiologist and that I'd just go see him again but he asked me to reconsider and see the one he was recommending and so I did. The new cardiologist listened to my heart and heard the murmur and said it sounded normal but wanted to do more tests, he did an EKG which showed 'sinus' (not sure what that means) and then he had me do a stress test which showed nothing of a concern, and then 3 weeks later I did an echo-cardiogram and I was super nervous as I know I wouldn't hear anything about the results for a week but the tech was nice enough to tell me I had nothing to worry about(she said she's not supposed to) and that she needs to read these just as good as the doctor can. That made me feel so much better and so when I had my follow up with my cardiologist I thought he was gonna just clear me but he was saying things I didn't understand and not what I was expecting to hear. He said a lot of jargon that I didn't understand and when I ask him to explain what any of that means he just tells me they need to do an additional test as he's 50% sure I have a BAV, even when trying to ask him little things about it he was pushy about just wanting to do this out-patient test to get better pictures of my heart. I told the cardiologist that the tech who did my echo said everything was fine and he just replied that he reads the echos better than the tech can. I just left it be after he said that as the tech said they need to read them as good as the doctors can. I left feeling unsure of myself and pretty scared as I felt like none of my questions were answered and I just felt like a number to this guy. When I received the online documents of my assessment I read my cardiologists notes and it read this 'Patient's heart murmur could be due to bicuspid aortic valve. There is no significant gradient across the valve and there is mild sclerosis. The leaflets could not be clearly visualized. In view of 4 heart murmur and the TTE I advised her to have a TEE for a more definite diagnosis before I embark upon ruling out other congenital anomalies found with a bicuspid aortic valve. Her exercise stress test was unremarkable. I have advised her to avoid any excessively strenuous activities till the workup is completed. She will be reevaluated after the TEE.'


So, from this I'm not sure what to think so I'm going back to the other facility I went to 3 years ago and seeing a different cardiologist there to get a 2nd opinion. Guess I wanted to post this here to get some feedback on what others think of this.

 

[pellicle]

Hi

well I'd say wait till you get more data. I'd say either write down those jargon words and learn what they mean or just accept that you have a team of people who are doing their best.

Measurements at this stage are often a bit "rubbery" so don't stress over it.

To paraphrase the words of our dear Ski Girl, If you aren't lying in a hospital bed with 10 specialists at the foot of your bed looking at you and discussing among themselves then you're ok.

Eventually you may need surgery, but it just so happens that its about the most successful medical intervention in the modern repertoire ..

Best Wishes

 

[honeybunny]

Like you, I needed to have a TEE after my echo in 2015 showed a BAV with stenosis. The TEE will confirm or rule out a BAV. I agree with pellicle that having this test will give you more information to take to another cardio if that's what you decide to do. Nothing wrong with going back to the first one to get a second opinion.

You're fortunate that the condition was identified long before you would need to do anything about it. I was told I had a murmur some years back by my general practitioner but she didn't say anything more about it. It was diagnosed only when I had some stress tests done due to shortness of breath and then it was severe and surgery time.

Re: the anxiety, I take a mild tranquilizer daily to help with mine. It's been a life-long condition. I don't advocate simply pill-popping but if you've not done so, and the heart thing is stressing you out to the point it's difficult to think of anything else, you might want to see a therapist to learn some coping strategies and get medication if necessary.

I wish you the best as you figure this all out. I don't see any reason for alarm. Please keep us posted. We care.

Hugs,
Michele

 

[Paleowoman]

When I was 25 a doctor heard a murmur when I was seeing him about a chest infection, he was pretty sure I should have known about the murmur but that was the first I was told about it. I saw a cardiologist, had echocardiogram as he thought it was BAV from the sound of the murmur. The echo was inconclusive - this was many years ago and echos weren't so good in those days and sometimes it's not easy to visualise BAV. I've no idea why, but nothing more was done at that point except everything noted. Fast forward a further 28 years to when I was 53 - a gastrodoc I was consulting heard the murmur and said I should see a cardiologist again. Cardiologist did echo and saw the BAV straight away, within a minute of starting the echo, and told me I'd need surgery one day as the stenosis was in the mild to moderate stage. I then had annual echos until I reached critical stenosis when I was 60, and had surgery. I never had a TEE. I carried on with exercise, including heavy weight lifting, right until the day before surgery. I never had any symptoms either. As honeybunny says, I wouldn't see any reason for alarm right now - even if you have BAV you may never need surgery, and if you do need surgery one day you know that you will be monitored once you are diagnosed. All the best !

 

[knotguilty]

A TEE gets a very good picture of your aortic valve. It should tell them if you have a BAV. You will be out so it is easy. I was also born with a BAV and didn't need surgery till I was 55. The one thing I would crecommend if I knew that far in advance was try to watch your cholesterol. Don't worry, it does not sound like you are even any where near needing surgury. It is just good to know and they will keep an eye on it for the rest of your life. And you may never need surgery, so don't fret. These things are always best caught early.

 

[epstns]

At this point, the important thing to do is relax and regain your composure. Your cardio is saying "patient MAY have a bicuspid valve." They cannot see the valve well enough via the standard echo, so they want to do the trans-esophageal echo, which better visualizes the valves. No big deal. The test may be unpleasant, but it is not invasive. There is no cutting or even, IIRC, IV's to be done. They just feed a small ultrasound transducer into your throat and look at your heart. They will use a numbing gel, so you won't feel much of anything.

One good thing noted in the echo report is that there is "no significant gradient across the valve." This means that so far, your valve is performing as a normal valve should, whether it has 3 leaflets or 2. An important thing to keep in mind is that although about 2% of the population have BAV (IIRC), only about 25% of these BAV patients ever need surgery. The rest just have valves with 2 leaflets instead of 3. In addition to this, for most BAV patients who eventually do need surgery, most will show no symptoms until around their 5th decade of life. These things usually progress very slowly in their early stages, then gain speed later in life. My BAV wasn't even a "possible BAV" until I was in my early 50's, and then surgery didn't become necessary until I was in my early 60's. Until then, I did whatever I felt like - running/jogging, weight lifting, home improvement projects, travel, raised a family, worked 50-60 hours a week. . . you get the picture. Having a BAV wasn't a problem until it finally became a problem.

The important thing right now is to complete the evaluations and learn their results. Then, just get back to your life. Apparently your present condition is not a threat to your life, so live life as you otherwise would. The challenge is to be able to compartmentalize your thoughts and not forget your scheduled follow-ups, but don't let your valve condition define your life. Don't let it BE your life. Live your life with this condition in the background until you need to do otherwise, not before.

 

[ZechariahLi]

My BAV wasn't even a "possible BAV" until I was in my early 50's, and then surgery didn't become necessary until I was in my early 60's. Until then, I did whatever I felt like - running/jogging, weight lifting, home improvement projects, travel, raised a family, worked 50-60 hours a week. . . you get the picture. Having a BAV wasn't a problem until it finally became a problem.

The important thing right now is to complete the evaluations and learn their results. Then, just get back to your life. Apparently your present condition is not a threat to your life, so live life as you otherwise would. The challenge is to be able to compartmentalize your thoughts and not forget your scheduled follow-ups, but don't let your valve condition define your life. Don't let it BE your life. Live your life with this condition in the background until you need to do otherwise, not before.

I'm 28 year old male, felt the same exact anxiety and fear on dec 18th 2016, where the cardiologist threw me the big word "severe aortic regurgitation, eccentric bicuspid aortic valve". Since then it was such a pain to face my wife and my 2 young children, had issues eating and sleeping. It was bad. But the diagnosis changed my perspective on many things, most importantly on how I should Iive my life and turned to God to seek for His forgiveness and peace.

Getting to this forum has been a great help. I'm really, really thankful for you guys, who has been there, done that and are encouraging us.

Knotguilty and epstns, did you guys have regurgitation when you were young?

 

[AZ Don]

I have read in these forums a number of stories of people that were first told they did, then that they did not have a BAV; and vice versa. Apparently the echo's can be difficult to read but as I understand it the TEE test will give your Dr's a better view to try to make a more definitive diagnosis. What's important is that there was nothing worse than mild symptoms noted in the test. BAV's can work well for a lifetime, but they are more prone to aortic stenosis and regurgitation (which are treatable). Also, aortic aneurysm occurs in roughly 25% of those with BAV, but again, not all aortic aneurysm's progress and if it does it is treatable. I know the jargon can be overwhelming but generally issues related to the valve are classified as trivial, mild, moderate, and severe. If you have nothing beyond moderate, then all a BAV means is that you will be seeing your cardiologist every year to monitor your valve and aorta.

 

[epstns]

Knotguilty and epstns, did you guys have regurgitation when you were young?

I was never told that I had any aortic regurgitation, but I did have "trace mitral regurgitation." I was told that this often occurs due to the unusually high exit pressure of the blood stream from the restricted aortic valve. That (mitral) regurg pretty much resolved itself once my aortic valve was replaced.

One other thing to keep in mind is that time has a way of making things seem "less bad." For the first several months after I received my diagnosis, I was shattered. I was an emotional wreck until three things happened. First, I found this site. Second, I read many of the posts on the site, and even got to meet a number of local members (anyone else remember the reunions and mini-reunions?). Third, I gave myself time to absorb the situation without forcing myself to make any decisions. I knew that I had the luxury of time on my side - that my stenosis was very noticeable but not yet even near the point at which I would need surgery. I took a long time to get used to the idea that "Sooner or later I will have to have this fixed, but not yet. So, I must learn to live life until that time."

I guess I became pretty good at "compartmentalizing" my heart condition. I knew it was being monitored by a very good cardio, so between doctor visits, I pushed it back in my mind and didn't try to figure it all out until I had to. By then (almost 10 years later) I knew enough to be able to comfortably make my treatment choices, develop my plan, and just "work the plan."

I've used the same approach on other major medical issues, and it always works for me.