New diagnosed with BAV and "minor" regurgitation.

[James H]

Hello everybody, I just turned 30 years old a couple of months ago and after a stress test + echo it was discovered that I have congenital bicuspid aortic valve syndrome (and considering i've had surgery as a kid and heart work ups in my 20's...no clue how this got by!) with what the doctor describes as "minor" regurgitation. His scale was from 0-4, and he rated mine at a 1 , told me that I had little to worry about right now and to schedule an appointment one year from the exam time and we'll follow it. He said the stress test showed nothing else of concern. Not exactly the kind of "bedside manner" i was hoping for considering the potential severity and complications I've read about since my appointment.

My concerns lie in my symptoms; I've been somewhat consistently getting bouts of shortness of breath out of nowhere, heart palpitations, chest pain, etc. I used to just assume it was all anxiety related...but now I'm having second thoughts. If that's the case though and I'm suffering the symptoms...everything I've read about is suggesting that it's a little more serious than what I've been lead to believe.I do plan on getting a second opinion about the severity of the issue in the coming months, but I wanted to hear from folks here and just get some general advice.

 

[AmyBL]

Hi James, welcome to vr! I think it is smart to get a second opinion. I was being followed by a cardiologist for about 3.5 years, and my numbers were slowly changing as in my aneurysm was getting larger. My cardiologist thought I should go to once per year testing (rather than once every six months). I thought about it, and asked my primary care doc. He thought it seemed reasonable but it didn't feel right. I told the cardiologist I wanted to get second opinion from a surgeon and when I did, he suggested I get surgery within 2 months! I went with the surgeon's opinion and had my open heart surgery last month.

Ultimately, I will never know how long I could have gone without having the aneurysm repair, but for me, it was important to be at peace with the treatment plan. I just could not settle with the cardio' plan and I am glad I sought out multiple opinions. For me it came down to trust -- trust that the doc's were listening, that they believed me, and trust that they would process information carefully.

Good luck with your decision,

Amy

 

[James H]

Hi James, welcome to vr! I think it is smart to get a second opinion. I was being followed by a cardiologist for about 3.5 years, and my numbers were slowly changing as in my aneurysm was getting larger. My cardiologist thought I should go to once per year testing (rather than once every six months). I thought about it, and asked my primary care doc. He thought it seemed reasonable but it didn't feel right. I told the cardiologist I wanted to get second opinion from a surgeon and when I did, he suggested I get surgery within 2 months! I went with the surgeon's opinion and had my open heart surgery last month.

Ultimately, I will never know how long I could have gone without having the aneurysm repair, but for me, it was important to be at peace with the treatment plan. I just could not settle with the cardio' plan and I am glad I sought out multiple opinions. For me it came down to trust -- trust that the doc's were listening, that they believed me, and trust that they would process information carefully.

Good luck with your decision,

Amy

Thank you very much for sharing your story with me, I greatly appreciate this. I'm sure it's normal to feel so overwhelmed with the scope of it all...so i'm just having trouble with it personally right now. Thankfully, i currently live in an area where I have access to a very highly touted cardiology center so I think I'm going to try and get in there to speak to somebody.

 

[AZ Don]

2nd opinions can be very helpful. After having my well functioning BAV spared during surgery for my aneurysm a couple years ago, my valve started leaking. The numbers on the echo changed pretty dramatically by the 2nd year and I was starting to think a 2nd surgery was around the corner. My Cardiologist said that my heart was functioning better than the numbers imply. I thought perhaps he was just being optimistic or sugar coating it, so I got a 2nd opinion with a well respected surgeon. He said the exact same thing. This gives me some peace of mind as well as more confidence in my Cardiologist. Hope your story turns out similarly but with symptoms I would definitely get that 2nd opinion.

 

[Paleowoman]

Hi James - the heart murmur from my bicuspid aortic valve was not heard until I was 25 despite having had doctors listen to my chest many times before. And the bicuspid valve was not verified until a few years later. And even then I was not followed up regularly by a cardiologist until my early 50's. I had aortic valve replacement when I was 60 and never any symptoms. You might want to ask for a print out of the test results of future echoes showing pressure gradients, ejection fraction, valve area size, size of aorta if there's a problem there too, etc, so that you can follow what's happening.

 

[dani's nana]

James, I also have a bav with mild regurgitation. I have had chest pain and shortness of breath before my stenosis was diagnosed as severe. New doctor and new findings. I also have another congenital heart defect known as a coarctation aorta. Which explains both of my symptoms. 6 years with my old cardiologist and 6 echos with them the coartation was not discovered or looked at. I now know the causes of so many unexplained episodes throughout my lifetime. Good luck to you!

 

[cldlhd]

Do you have any other tests scheduled besides the echo? I'm not an expert and I believe an echo would show it depending on who's reading the echo but I think a CT angio would be better in determining if you also have a dilated aorta or aneurysm.

 

[Odie]

Welcome James. This site has been, and continues to be, an excellent resource for helping me understand my heart's health.
When I learned I had a bicuspid aortic valve, and started seeking information about potential risks, one thing that wasn't immediately obvious to me is that BAV comes in many different flavors. Before I understood much about my own specific BAV, I mistakenly saw almost every BAV experience as applicable to me. I caused myself a lot stress and anxiety seeing everything in the aggregate. Take a deep a breath. Understand that some BAV owners have calcified valves and some have no calcification. Some BAV owners have lots of symptoms, some have none. Some BAV owners have enlarged aortas, some don't. Some have aortic regurgitation, some have aortic stenosis, and some have neither. You get the idea...

Having an aortic valve with two leaflets instead of three, and some minor regurgitation, does not by itself say anything about your future. Many people live their entire lives with heart murmurs caused by regurgitation. Many people also go through life never even knowing they had a bicuspid aortic valve.

I'm not at all suggesting you ignore your diagnosis or anything you suspect might be a symptom. Please do discuss everything that concerns you with your doctors. But also don't discount stress as the cause of suspected symptoms.

At 50 I learned I had BAV with severe regurgitation. Looking back I don't think I ever had a single symptom due to my very leaky valve. I was, and still am, very active. But there were plenty of times, mostly when I was under great stress, when I associated something "abnormal" to my BAV diagnosis.

My advice is this:

• Focus on controlling how you respond to stress and anxiety, because that will make it much easier for you to identify any symptoms caused by changes in your heart's health.
• Inform your doctors of any changes in your health
• As time goes on if your doctors become more concerned about your BAV then always have them explain specifically WHY they are concerned.

 

[James H]

Welcome James. This site has been, and continues to be, an excellent resource for helping me understand my heart's health.
When I learned I had a bicuspid aortic valve, and started seeking information about potential risks, one thing that wasn't immediately obvious to me is that BAV comes in many different flavors. Before I understood much about my own specific BAV, I mistakenly saw almost every BAV experience as applicable to me. I caused myself a lot stress and anxiety seeing everything in the aggregate. Take a deep a breath. Understand that some BAV owners have calcified valves and some have no calcification. Some BAV owners have lots of symptoms, some have none. Some BAV owners have enlarged aortas, some don't. Some have aortic regurgitation, some have aortic stenosis, and some have neither. You get the idea...

Having an aortic valve with two leaflets instead of three, and some minor regurgitation, does not by itself say anything about your future. Many people live their entire lives with heart murmurs caused by regurgitation. Many people also go through life never even knowing they had a bicuspid aortic valve.

I'm not at all suggesting you ignore your diagnosis or anything you suspect might be a symptom. Please do discuss everything that concerns you with your doctors. But also don't discount stress as the cause of suspected symptoms.

At 50 I learned I had BAV with severe regurgitation. Looking back I don't think I ever had a single symptom due to my very leaky valve. I was, and still am, very active. But there were plenty of times, mostly when I was under great stress, when I associated something "abnormal" to my BAV diagnosis.

My advice is this:

• Focus on controlling how you respond to stress and anxiety, because that will make it much easier for you to identify any symptoms caused by changes in your heart's health.
• Inform your doctors of any changes in your health
• As time goes on if your doctors become more concerned about your BAV then always have them explain specifically WHY they are concerned.

Words can't do justice just how much I appreciate this post. From the bottom of my leaky little heart, Thank you. You're right in every capacity...just because someone else had something happen, doesn't mean it'll happen for me like that.

 

[SuzanneSLO]

James: As another data point, my story.

I was diagnosed with a murmur at 18, but never really knew what it meant.

At 32, I woke up with chest pain that didn't resolve after several hours. I had my first echo that day. The doctor called the next day to tell me I had a BAV with mild regurgitation. I asked if that was the cause of the chest pain and he said, probably not (the chest pain was probably a mitral valve prolapse which was resolved without intervention). I saw a cardiologist who told me not to worry about the BAV, that I would probably need a new valve in another 30 years or so, but in the meantime, he could tell me from personal experience that it would be tough for me to get cheap life insurance. I left with no follow up plan.

About 10 years later, my new primary care physician suggested I should be getting an annual echo. I did and my regurgitation was now "moderate." No referral to a cardiologist and I continued with annual echos. A couple years later, I was able to get 10 year term life insurance at an okay price, but had been rejected by at least one insurer who would have covered me with "mild" regurgitation, but not "moderate."

At age 55, my annual echo showed severe regurgitation. As I really had no symptoms, my PCP wanted to continue watchful waiting and do echos every 6 months. My husband freaked out from the diagnosis and wanted me to see a cardiologist. When I saw the cardiologist 2 months later, his first reaction was that the echo might have been misread. He read it again and said it sure looked like I should be thinking about surgery. As part of the pre-surgery tests, it also became apparent that I had an aortic aneurysm that also needed attention. I was also starting to have some symptoms, such as tiredness and shortness of breath, but not enough to make me cancel a trip to Disney World. About 5 months after the echo that showed the severe regurgitation, I had surgery to replace the BAV and to repair the aorta.

Two and a half years later, my life goes on much as it did before surgery. With a tissue valve, I take one more pill each day than I did before (low dose aspirin).

My story may not be typical, but I don't think it is unusual either.

This is a great board with lots of information. Stop by when you have questions. Live your life and enjoy it. -- Suzanne

 

[James H]

Suzanne, thank you very much for sharing your story. I actually just setup an appointment for a second opinion with a very well respected local cardiologist group, so I'm excited at the idea that I'm going to get some firm information and not just a number system that my original cardiologist came up with , and no hard data. I get so many bizarre feelings in my body now, especially my chest...it's scary that I can't figure out whats gerd, or anxiety, and what might be signs of something else. The thought of surgery scares the heck out of me...not even just because of the process, but the fact that I'm moving into a new chapter of my life and the timing would just be horrible. Signed the lease on a new apartment, became the leader of my team at work, and previous to the BAV diagnosis i thought i was getting a handle on my anxiety. Life has a weird way to it sometimes. Now begins the battle of maintaining my mental health.

 

[James H]

Hey again, I received a copy of my echo test today, and I was wondering if maybe some folks here could provide me with some help. Is there anything *alarming* in these descriptions?
Conclusions:
1. Left Ventricle size, wall thickness, and systolic function are normal with an EF greater than 55%
2. There is "mild aortic regurgitation"
3. Aortic valve is bicuspid and is mildly thickened.
4. The "ascending aorta" is mildly dilated at 3.8cm (that's the one that makes me nervous)

Findings:
Left Ventricle: (See above)
Right Ventricle: RV appears normal in size and function
Left atrium: Size is normal
Right atrium: Size is normal
Aortic Valve: "Mild aortic calcification without stenosis". Mild aortic regurgiation.
Mitral Valve: Trace mitral regurgitation. Buckling of anterior mitral valve leaflet.
Tricuspid Valve: trace tricuspid regurgitation present. Right ventricular systolic pressure is normal <35mmHg.
Pulmonic Valve: Normal
Aorta: Root size is normal, see above about ascending aorta
Pericardium: Normal, no effusion.
ASD/VSD; Interatrial and interventricular: intact.

There's a ton of numbers too (2d, m-mode and Doppler), but I won't post those unless requested.

 

[rakesh1167]

Your result appears OK to me.

How is your blood pressure? Do you indulge in heavy physical exercise?
These things can contribute to aorta size increase. At least they were responsible in my case.
Only thing i would suggest is to take care of BP and your weight in order to prevent(slow) the growth of aorta.

 

[James H]

Your result appears OK to me.

How is your blood pressure? Do you indulge in heavy physical exercise?
These things can contribute to aorta size increase. At least they were responsible in my case.
Only thing i would suggest is to take care of BP and your weight in order to prevent(slow) the growth of aorta.

My "normal" bp is usually around 120/80, with a resting pulse rate of around 67-70ish.

Not physically active; I wasn't doing anything for a while, but I usually walk for about 20 minutes a day, and do very light stationary bicycling for 10-15 minutes as well.

 

[JulienDu]

An active lifestyle will delay the time of a possible surgery. I had a valve repair ( from a severe stenosis ) as a kid, that could have lasted more than 30 years easy if I did not have an aneurysm. My cardio told me the shape of my valve was exceptional considering its history and how bad it was originally. I asked him why. He told me because I have had a very active life style, a good diet and no weight issue. And he is a Cardio involved in lots of research with a great reputation. So my advice is dont ruin a not too bad situation by a shitty lifestyle and carry on trying to be more active. BP pressure at rest is different as not a rest, this will expand your aneurysm faster if you have weight issue, also don't do any heavy lifting, this is catastrophic for aneurysm ( my job involves lots of continuous heavy lifting ). Your aorta wall could be weaker than a "normal" person unfortunately, as it usually relates to aortic valve deficiency.

 

[MethodAir]

Hey again, I received a copy of my echo test today, and I was wondering if maybe some folks here could provide me with some help. Is there anything *alarming* in these descriptions?
Conclusions:
1. Left Ventricle size, wall thickness, and systolic function are normal with an EF greater than 55%
2. There is "mild aortic regurgitation"
3. Aortic valve is bicuspid and is mildly thickened.
4. The "ascending aorta" is mildly dilated at 3.8cm (that's the one that makes me nervous)

Findings:
Left Ventricle: (See above)
Right Ventricle: RV appears normal in size and function
Left atrium: Size is normal
Right atrium: Size is normal
Aortic Valve: "Mild aortic calcification without stenosis". Mild aortic regurgiation.
Mitral Valve: Trace mitral regurgitation. Buckling of anterior mitral valve leaflet.
Tricuspid Valve: trace tricuspid regurgitation present. Right ventricular systolic pressure is normal <35mmHg.
Pulmonic Valve: Normal
Aorta: Root size is normal, see above about ascending aorta
Pericardium: Normal, no effusion.
ASD/VSD; Interatrial and interventricular: intact.

There's a ton of numbers too (2d, m-mode and Doppler), but I won't post those unless requested.

I don't see anything alarming there. And your BP is normal. If there was such a strong correlation between heavy lifting and ascending aortic aneurysm, strongmen, powerlifters and bodybuilders would be dropping like flies. But they aren't. Live your life, and get periodic check ups.

 

[JulienDu]

If there was such a strong correlation between heavy lifting and ascending aortic aneurysm, strongmen, powerlifters and bodybuilders

As a general rule yes, but according to my cardio there is when associated with connective tissue disorder and BAV. I can give my case 29years 5cm aneurysm, or you can look at this other fellow with the 3 surgeries working in construction and with a 6.3 aneurysm at 30.

 

[MethodAir]

With up to 2% of the population with BAV...that's a ton of strength athletes lifting extreme poundages with this condition. And as far as I am aware, there is no higher incidence of aortic dissection here than in the general population. All of these strength athletes are performing the Valsalva Maneuver as well. Another case in point ...Arnold Schwarzenegger...BAV, no dissection or aneurysm repair...John Ritter on the other hand...There is obviously a lot more to the story.

 

[JulienDu]

With up to 2% of the population with BAV...that's a ton of strength athletes lifting extreme poundages with this condition. And as far as I am aware, there is no higher incidence of aortic dissection here than in the general population. All of these strength athletes are performing the Valsalva Maneuver as well. Another case in point ...Arnold Schwarzenegger...BAV, no dissection or aneurysm repair...John Ritter on the other hand...There is obviously a lot more to the story.

Strong correlation has been proven between BAV and Ascending aortic aneurysm. ( of course not systematic )
Strong correlation has been proven between aortic dissection and temporary raise in blood pressure.
Any heavy weight you lift ( wether it is a log or fridge) increase your blood pressure.
Therefore there is a correlation between aortic dissection and heavy weight lifting.
There is a reason why any decent cardio ask a patient to stop any heavy lifting when his aneurysm reach a certain size.
That does not mean that heavy lifter population are the only population slightly more at risk but the facts are here.

 

[MethodAir]

Therefore there is a correlation between aortic dissection and heavy weight lifting.

Well this is the school of thought promoted by most members of cardiology. But like a lot of theories (eg saturated fats cause heart disease), science and data show otherwise.

If one was to follow this logic, then it would be reasonable to assume that a massive, acute rise in blood pressure from a powerlifter with BAV performing a 1000lb squat (systolic pressure in the hundreds), would have a very very high probability of having an aortic dissection...

But statistically, it doesn't work out that way. Part of the reason, is that in a well performed heavy lift, the pressure of the cardiac blood vessels counter and balance the rise in blood pressure.

I suspect the reason we see so many dissections from sedentary people at rest is because the blood pressure greatly exceeds this opposing force (bigger gradient).

Cardiologists are very often quick to condemn heavy weight training, but ironically, unlike long sessions of steady state cardio which they commonly espouse, it can actually substantially raise your ejection fraction. Do the math.