What is Danger of BaV

[mbeard]

Hey all,

I have a few questions about BAV, that I am now confident to ask. I was diagnosed 8-12-2013 with this, and an enlarged aorta. 4.2-4.5.

A. Can you live with a BAV and not replace it?

B. What makes it where you have to graft and/or replace it?

C. If you do not have stenosis, or an aneurysm , do you fix a BAV anyway?

I know the aneurysm is something to be cautiously watching, but IF I just had a BAV, would I have to fix that?

I have no symptoms at this time.

Thanks to all,

Melissa

 

[river-wear]

A. Yes, absolutely. They (cardiothoracic surgeons) say that the majority (60-70%, IIRC) of people with BAV may never even know they have it because it functions just fine. Also, when they repair regurgitant BAVs, the repaired valve is still bicuspid. It just shouldn't leak anymore.

B. The grafts are to correct aneurysms so they won't dissect. Sometimes they can do a valve-sparing operation and just do the graft. The valve needs to be replaced if it becomes stenotic (narrowed). That seems to be a fairly common situation with aortic aneurysms.

C. No. A BAV that is behaving itself and functioning well should not be fixed. Even if it isn't functioning all that great, there are guidelines that determine when action should be taken. It can take years to get to those thresholds. It depends on how the heart is compensating for the valve malfunction. The heart can be amazingly resilient when the deterioration is gradual.

You can download a PDF of the guidelines here if you're curious.
http://content.onlinejacc.org/article.aspx?articleid=1838843

 

[Heart Of The Sunrise]

A. Can you live with a BAV and not replace it? All depends on the very specifics of your total cardio-vascular situation.

B. What makes it where you have to graft and/or replace it? I was told that if your aortic aneurysm gets near 5.0 it is time to repair or replace it. As my surgeon says in the video that is linked in my signature...your first warning side with an aortic aneurysm is usually the last.

C. If you do not have stenosis, or an aneurysm , do you fix a BAV anyway? All depends on your very specific situation.

I know the aneurysm is something to be cautiously watching, but IF I just had a BAV, would I have to fix that? My feeling was once I knew about my situation....fix it as soon as possible. Yes, I was scared and it was difficult. But that was leading up to it. The waiting is truly the hardest part for most of us. Mine was 4.5 when I found out about it...in five months it grew to 4.9.


Most of these situations are a routine day for our surgeons. The success rates are extremely high. It may be a big deal to the patient, but if you do your homework and trust your medical advice...chances are extremely high that everything will go just fine.

 

[epstns]

Melissa - I have no experience (thankfully) with respect to aneurysms, but I did have a bicuspid valve. As the others have noted, only about 25% of the BAV patients ever need surgery to repair or replace the valve, so if you have "only" a BAV that is working normally, there is statistically no reason to go through the highly invasive surgery to replace the valve.

The docs base all of their recommendations on statistics. They know the survival rates for plain aortic valve replacement surgery (somewhere between 98% and 99%) and they know that if your valve is working normally your survival rate (from valve-related issues) is 100%, so they don't recommend replacement of normally functioning aortic valves. Who wants to go through the surgery and recovery only to have an over-all lower chance of survival than if they did not do it?

P.S. Not even all patients with defective BAV's need surgery. Some patients present with aortic stenosis so late in life that they die of other causes before their valve gets bad enough to need replacement. There are so many variables here that we should hire a statistician to work the probabilities for us. . .

 

[workmonkey]

Hi Melissa - As others have stated, many people with BAV live long, healthy lives without ever needing surgery. Many people live their whole lives without even knowing they have BAV. A bicuspid valve can function perfectly fine for a lifetime. Same for mild aneurysms. The newly released AHA guidelines have raised the recommendation for aneurysm surgery (absent any symptoms) to 5.5 cm for most people with BAV. I think they mentioned that in their studies, something like 2 people had dissection out of 460 they were tracking. The odds are extremely low. So it really isn't something to lose sleep over with your current numbers.

My personal experience: I also have a bicuspid valve with no stenosis, no symptoms and mild regurgitation. However, I had an aortic aneurysm (5.1 cm) that required surgery. At the time, I assumed they would just replace the valve since they were in there. But as my surgeon said before my surgery, why should he replace the valve (even bicuspid) if it was functioning fine? He said there was nothing he could put in (mechanical or tissue) that would be as good as my natural valve (unless that valve starts to fail, which may or may not happen one day). During the aneurysm surgery, they touched up the valve since they were in there anyway .. But if it weren't for the aneurysm, I may have not needed surgery for decades ... All valves, bicuspid or not, tend to calcify and weaken over time, which is why valve-replacements are common for people in their 60s and 70s (have you ever been to Florida? valve surgeries are like cavity fillings) .. But as per your question, with no symptoms there is no reason whatsoever to replace a BAV that may do the job your whole life.

 

[mbeard]

To all friends who responded,

Work monkey, Steve E., Heart, and river,

All of your advice is immensely helpful and confidence building. Ok, it really isn't advice but information about your personal experience.

This is what I have ascertained about my question...

A. A BAV can be lived with , if the regurgitation stays mild and there is no stenosis.

B. Aorta aneurysms , their size and the rapidity of the growth, factors into the decision to plan OHS. You want to have this surgery before you have a aorta dissection. Long before.

Thanks to all my new heart valve friends,

MbeardReply(Melissa)

 

[epstns]

I'd even slightly modify item A as follows:

A BAV can be lived with, as long as the regurgitation or stenosis is not bad enough to require surgery by itself. This is why they have all of those levels of severity identified. As long as the regurgitation or stenosis is less than severe, it can probably be lived with. Case in point - if you got to be 88 years old and finally your valve was finally bad enough to be rated 'severe', would it need surgery? Depending upon the patient's age, lifestyle and general health, the human body can compensate for many shortcomings. The cardio's know how to evaluate this compensation and are quite satisfied to watch and wait as long as the body does not harm itself unduly along the way.

Kind of a long-winded way to say that although you may be diagnosed as having a BAV, you can live your life as if it wasn't that way, except for the one or two days a year when you go to cardio check-ups, until your valve "tells" you otherwise.

 

[chaconne]

Melissa,

Three people in my immediate family have BAV. I had it (before mechanical valve replacement), my brother and my mother. I'm 44, my brother is 36 and my mom is 69. Ironically my mother has never had a problem. She's got a slight murmur but nothing that needs fixing. My younger brother has it a little worse, with moderate regurge and a slight aneurism. He still may be many years away from needing surgery however. I had it the worst with what you see in my signature. I chose to have surgery before symptoms showed up because my bulge was 47mm which was getting close to the critical size. I have a wife & 3 kids and don't intend to suddenly die on them.

-Steve