Diagnosed last year with BAV

[bicuspidguy]

Hello All,

I'm new here and this is my first post.

I was diagnosed with a BAV with mild/moderate aortic regurgitation with no stenosis a little over a year ago. I recently had my yearly echocardiogram and there has been no change in my BAV condition in the last year.

A little history before I ask some questions:

60 year old male
6'1" 205 lbs
My BAV is of the two flap variety
No calcium buildup noticed on BAV
Very active athlete up until about age 40 then activity tapered off. Fairly sedentary now.
PVC discovered at age 54. Caffeine & chocolate seem to make PVC's more noticeable
Ski once a year in Colorado with no problems (just got back today from Copper Mountain)
Walk 18 holes of golf every month or so with no problems
Can use elliptical for 20+ minutes and get heart rate up to 160 with no problems (no chest pains)
Dull chest pain on the right side of sternum. Pulmonologist and Cardiologist say that it is not my heart or lungs causing problem.
No shortness of breath

My private cardiologist says that my BAV and everything else looks good and that he would be surprised if I ever need a replacement. He says that my aorta looks fine too. Still, I'm going to get a second opinion from a Cardiologist with the Veterans Administration in a few weeks since I figure a second opinion can't hurt.

Questions:

Does anyone else with BAV have chest pains on the right side of their sternum?
My cardiologist says that people with serious heart problems don't go skiing without having issues. Sound right?
What are the chances that the diagnosis is wrong?
Does anyone have experience with VA Cardiologists?
Does anyone else have a similar situation?
Are there specific heart measurements that I should ask my Cardiologist for?

I'm certain that I'm leaving out a few questions that I should have asked, so please jump in and answer those that I should have asked also.

Thanks in advance,
BicuspidGuy

 

[epstns]

Well, bicuspidguy, I can't speak to all of the points you raise, but I don't want to leave you here all alone. . .

I, too, had a bicuspid aortic valve. Mine became stenotic. I was diagnosed at about age 52, and the valve was replaced at age 63. I am now 67, and still do whatever I did before (well, maybe a bit slower, though).

At the moment, it seems that you are in the "watch and wait" category. You could stay in that status for a long time, or you could start to progress more quickly toward surgery. There is no way to predict the progression of valve disease, so just hang in there and live your life the way you want to live it.

Chest pains on the right side of your sternum? What sort of pain? Is it pain, or tightness? These are things a cardio should be asking. It could be heart-related, or could be not. Only a doc with appropriate tests can confirm.

As to whether people with serious heart problems can exercise, I disagree with your cardio. I had severe aortic stenosis and was still running and lifting weights pre-surgery. It is amazing how much the human body can compensate for its own shortcomings. If you were/are in good shape, you can probably do more with a bad heart valve than most guys your age can with a healthy heart. Again, only the cardio, armed with appropriate test results can tell what's up.

It certainly sounds like you're doing fine at the present. It would be worthwhile to get copies of your last several echo reports and build a chart of all the readings, looking for changes or trends. If all readings are truly stable and you can exercise with no chest pain or shortness of breath, you're probably OK to watch and wait a while longer. Who knows, things may just stay the way they are. IIRC, only about 25% of all patients having bicuspid aortic valves end up needing surgery. You may be one of the lucky ones.

So, welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I spent nearly 10 years waiting there myself. Make yourself comfortable, visit often and ask all the questions you want. The folks here are probably one of the best resources for first-hand experience with heart valve issues, and they are very open and gracious in sharing.

 

[bicuspidguy]

Chest pains on the right side of your sternum? What sort of pain? Is it pain, or tightness? These are things a cardio should be asking. It could be heart-related, or could be not. Only a doc with appropriate tests can confirm.

.

Thanks for the reply Steve,

The pain is always a dull pain and it comes and goes. I can't tie it to anything. It mostly feels like it's on the top of my ribcage on the right side of the sternum. On a scale of 1 to 10, I'd give the pain a 2. Just enough to notice.

My cardio doc says that my chest pain is absolutely not a heart problem. He's performed every test except an angiogram and he says that I have no blockage whatsoever. BTW, I do not have heart disease in my family. No parents, siblings, uncles, or cousins have ever had heart disease.

My pulmonologist says that it is probably Costochondritis ( https://en.wikipedia.org/wiki/Costochondritis ) and that the reason that it isn't healing is that unlike a broken arm that is put in a cast to facilitate healing, one's chest wall is always moving and it takes forever to heal.

BicuspidGuy

 

[epstns]

From my limited knowledge and experience, I'd tend to agree with your pulmonologist. We do know that during heart surgery they put our upper bodies through all sorts of contortions, and this may be a lingering after-effect of something they did.

I know that since my heart surgery I've had much more shoulder pain than I ever had before. Others here have opined that with the weird positions our arms are forced into during surgery, I may have sustained some sort of injury that results in periods of pain for me. So far, I just adjust my exercise routine and carry on. Some days I can do my usual morning push-up routine, others I can hardly open a car door. This "getting old" isn't for sissies!

 

[07sti]

Just wanted to note that I’ve had a dull chest pain (2 or 3 out of 10) at times as well. It usually lasts for a few days to a week. My cardiologist and PCP have both said that as long as the pain is constant, that is, it doesn’t change based on activity or breathing, I don’t need to worry.