Bicuspid or not Bicuspid

[Marcuse807]

I'm interested to hear how you all got diagnosed with a bicuspid valve.

Over the last 18 months I have had three echocardiograms. The first set of results led my cardiologist to say with some certainty that I did NOT have a bicuspid value or aortic dilation, but I did have regurgitation. He set me on a battery of tests to get objective indicators. My stress test for cardiac lung function was decent. I did 15 mins on the Bruce scale. Then I did a stress echo and did 13 mins. Following the tests my cardiologist stated that I probably had a bicuspid valve and I had mild AR. He said it was nothing significant. As you can imagine I did not feel the same. I asked my GP for my results and found that my Aortic root was mildly dilated at 38mm. Anyway, I was booked in for annual echos to follow me.

Last week I had my first annual review. I asked them for a definitive diagnosis of the valve. Numerous people were called in to give their views of my echo. They were still not certain!! What I gathered was the following:

- From one angle the valve looks like it may be bicuspid, as the cusps (right/left) are partially fused. There is no evidence at all of stenosis.
- There is regurgitation, but the jet is eccentric! They showed the echo to me and basically the jet skirts down the inside wall of the chamber (against the internal septum). It seems quite narrow. They reckon this is mild, but because it is eccentric there is a danger of under-measuring it.
- the aortic root measured 35mm. I asked them to check as it was 38mm last time and three people said it was now 35mm. I believe this would be normal range. The STJ is 30mm and the Ascending Aorta 35mm.

Is this level of uncertainty common? Is it common to not really know if it is bicuspid or not? Is partial fusion likely to result in the eccentric jet and what does this mean exactly?

The ejection fraction and the left ventricle are deemed normal, though the LV was 54mm on my last test, don't know the current measurement.

I still feel pretty rubbish most days, lack energy and every day about 4pm I get really tired and my head gets very foggy - been on propranaol and ramipril.

I'd be very interested in any experiences or advice. Many thanks.

 

[epstns]

It is quite common for patients to be given diagnoses much like mine was. My echo reports used to say "Probably Bicuspid Aortic Valve." Unfortunately, echo's are not precise tests. There are so many variables involved that echo's are normally used only for general diagnostic and monitoring purposes. For example, when an echo shows aortic stenosis, they will not replace a valve without the more exact measurements of an angiogram. In many cases, they are unable to see into the valve clearly enough to know for sure how many leaflets are present - especially if two are possibly fused. The echo is really just a computer-aided model derived from bouncing sound waves off moving soft tissue. Somewhat inexact, I'd say.

The real question is "At this point, does it really matter whether your valve is bicuspid or tricuspid?" Would this knowledge change anything in your treatment plan? I would guess not. You may be concerned because of the possible connection between bicuspid valves and other complications like aneurysms, but careful monitoring of your heart and aorta will keep your doctors aware of any issues in these areas.

Your late afternoon energy crisis could be related to your heart, or it could be your meds, or it could be any of a host of other issues. If your are deemed to be some years away from valve surgery, it might be worth having a complete physical evaluation to rule out any other possible causes.

 

[tom in MO]

For me, I got no details other than you have a heart murmur and then when echos were invented. BAV with stenosis. They scheduled surgery based upon the echo after the stenosis got past a certain point.

If you have low energy and fall asleep in the middle of the day there are two things for a 47 yo man other than a BAV. First is sleep apnea (do you snore?) and second is low testosterone (having any ED?). Both of these conditions can be initially assessed with a simple scored questionnaire.

 

[pellicle]

Hi

I'm interested to hear how you all got diagnosed with a bicuspid valve.

it was a long time ago and it took some years to go from knowing more than it was a murmur ... I doubt that the details of diagnosis would be related to todays medical technology.

Still, it took a few goes to find my aneurysm and that was recently.

So all that I can say, is just try to be patient and know that medical diagnosis is not as good as Star Trek tricorders and there is a lot of interpretation of noisy data to be done.

Best Wishes

 

[DebbyA]

I think all above gave good advice. You seem to have the misfortune of having a distinctive heart formation, and it's frustrating not to get precise accurate answers. (I went around for years with a diagnosis of mitral valve prolapse.)

 

[Paleowoman]

I was told I had a mumur when I was 25 and that it was almost certainly bicuspid aortic valve murmur, but echos in those days weren't so good as nowadays so everything was kind of brushed aside except when a doctor happened to listen to my chest. I had no follow ups until I was 53 when a gastroenterologist heard the murmur (I suspect when listening to my abdomen the sound of it was in my aorta which travels down the abdominal area) - and said I should see a cardiologist again soon. Cardiologist confirmed with echo that it was bicuspid and from then on I had yearly follow ups. I never had surgery till I was 60 and I never had any symptoms even though the murmur was there all those years.

 

[knotguilty]

A TEE is usually pretty definitive for a BAV. That is ultimately how they determined mine. It is hard for them to tell from the normal echo. You should also have a carodid doplar (sp?) done. Other than that a cardiac cath tells all.

 

[river-wear]

I was diagnosed with a murmur when I was four and didn't find out for sure it was bicuspid until I was 46 and got a TEE after my doctor said it was time to get it fixed. It was only in the last 5-10 years that I even saw "probable BAV" on one of my reports. No doctor mentioned that part, weirdly enough. The TEE gave a good view and showed just how bad the insufficiency was.

The measurements and EF are all somewhat dependent on the technician's skill, so echo results will show some variation as well. I was originally told I needed surgery five years early because a tech did a crappy job with her measurements. A second opinion showed my heart was not significantly different in size from my prior tests.

Good luck to you. I think Steve is on the right track saying it doesn't matter too much if your valve is bicuspid or not. You'll deal with whatever you have in there. However, if you have children you might want to have them checked for murmurs as BAV does have a genetic component.

 

[R1Phrankey]

I have had a TEE last year Feb. This TEE showed the aortic valve to be tricuspid. I have had surgery in May and the surgeon told me that 2 cusps were fused and slightly calcified. These fused cusps were not clearly visible on the TEE.

 

[techietoast]

I was diagnosed with a murmur when I was 12 years old. I did not find out that my valve was bicuspid until I was 34 years old, 5 days before I had full aortic heart valve replacement. I had a 1/2 centimeter of flow passing through the valve, and the cardiologist could not even get thee catheter through the valve. There was so much stenosis, I was told that I could have walked down the street and dropped dead. I spent 9 weeks out of work recovering from the ordeal. I even developed an infection of the sack around the heart and had to have 2.5 liters of fluid pumped out of chest. I developed migraines from the increased blood flow. My AVR output shot from 10 to 67% overnight. I had to sleep upright with pillows for 5 weeks straight because of the headaches. For the past 9 years I have been in and out of hospitals from Las Vegas NV to Topeka KS. My last hospitalization was to have a stent inserted in my inferior vena cava, the lower great vein.

 

[Paul Schur]

I was a happy and seemingly healthy 51 yo male, traveled the world a couple of times a year, just returned from trekking across Greece. Never had any big symptoms of any heart related issues. At the time I didn't know the sluggishness I started feeling in the afternoons was related to anything but getting older as I had recently turned 50. One night I felt a small and slight flutter in my heartbeat at a movie theater and my gut told me it wasn't right. Went to the ER within an hour, they looked at me like I was nuts, ER doc asked how long I'd had the murmur, I told him I didn't have a murmur and he kept his game face on. He checked me in overnight "just to be safe".

After a 7am echocardiogram I was diagnosed. And mine was bad, lots of regurgitation, I was actually in active heart failure at the time and had no real clue. I had valve replacement surgery 24 days later at Johns Hopkins and also had part of my aortic root removed - I had the full 10 cm chest cut/break.

That was nine months ago. I went back to work after 8 weeks and at my 6 month check up I was told I had a perfect recovery as my heart actually went back to its normal size after it had been enlarged during the lead up to surgery. I've been on several 5 hour plane ride trips since, and just returned from a big one, 13 hours to and from Buenos Aires. I feel like I'm 85% there. t was not a painful recovery per se, but slow and all about progress. Because of others in this wonderful forum I had a good idea of what to expect and being aware of small steps is what kept me knowing I was on the right path.

 

[bolligal]

I was told that I was bicuspid at 6 years old and played the waiting game for 24 years before AVR surgery at age 30 (6 years ago). When the valve was removed it was actually "monocuspid", one flap that was fused in a weird way that it functional, but with moderate stenosis that finally progressed to the point of needing surgery. I was confused on why the Dr's didn't know it was "monocuspid", but didn't dwell on it much.

In 2012 while my wife was pregnant, and my son was in the womb (26 weeks along), we had an appt and the Dr used an ultrasound to look at my son's aortic valve, you could see it plain as day with 3 perfectly functioning tri-cuspid valves. I cried. What I don't understand is why this is something they can do for unborn fetuses, but they can't use the same technology on adults? If I were you, I would ask if an ultrasound could be used to get a better picture of what is going on in there.