Bicuspid aortic valve

[Coopercody]

My doctor detected a very small heart murmur and when I went to the cardiologist, he determined I had an unrestricted, bicuspid aortic valve and the mitral value is thickened with mild myxomatous degeration and redundancy without mitral valve prolapse.   The tricuspid and pulmonic valves were normal.  I feel fine with no issues and the doctor did not seem to be overly concerned.  The doctor suggested that I get an EKG every two years to keep an eye on it but that was all.  

Is this something I need to worry about?   Now in applying for life insurance, some companies have denied me completely feeling that this could be something very serious and the only company that did accept me is classifying me as a high risk patient.   Can my PCP or cardiologist write something to calm down the insurance companies are is this indeed a high risk heart issue?   Your feedback would be greatly appreciated.

[Coopercody]

I don't recall the specific comments from my CT Scan regarding my aorta, but they did not seem to be concerned about anything at the time so I didn't worry about it.However, you bring up a great point so I will be contacting my doctor to get a copy of the results and clarify things as you indicate above so I understand them.  Thanks for your input.

I do agree about your suggestion for a 2nd opinion. While I am not aware of any missed items, given the potential seriousness of BAV, I feel it behooves me to check things out further to be sure.   Since there are a variety of recognized experts on BAV out there, are you able to recommend a doctor or group of doctors whom you have found to be very good?   If you would prefer, I can get this information from you offline.

Thank you again so much for your comments and suggestions!

[skydnsr]

So you are saying that you have already had a CT scan of your entire aorta, from the valve down to the bifurcaton where it splits into the two iliac arteries?  Because if you have had that, and it truly was normal, and if all of your valves truly are functioning normally, then I think you are good to go for another two years, and just try not to think about it between now and then.  If you are lucky, you will be one of those people who will go through life with this as a benign condition and will never have to have surgery.  But you do need to be monitored, because of the risks that either a valve or the aorta could deteriorate in the future.  

Some doctors do recommend screening of bicispid patients for brain aneurysms, as there is a higher rate of both brain aneurysms and aortic aneurysms for BAV individuals, compared to the general population.  Whether you need to go through a CT or MRI on your head is a decision between you and your doctor.  Some doctors poo-poo it, but the statistics are there to support screening for brain aneurysms in association with BAV.  Some people want to push this issue with their doctors, some don't.  I chose not to, but that was my choice.  You may feel differently.    

BAV is an emerging area of medicine, and you can find a lot of conflicting information about it.  In my opinion, the wisest thing someone with BAV can do is to educate himself, so he will know what he thinks he should be concerned about and what he can blow off.  Everybody with BAV has his own unique version of the condition, hence, as kenkeith stated, BAV is something that "doesn't lend to a definitive prognosis."

If, after all is said and done, you still feel uneasy about the idea of waiting two years to be re-evaluated, you can send your CT images and your echo to one of the recognized experts on BAV and get a second opinion.  There are a number of such experts around the country.  They are used to giving long-distance opinions.  Some of them charge for it, and some of them don't.

Good luck.

[Coopercody]

Thank you both very much for your responses.  

Skydnsr - You are correct - the Dr. recommended an echocardiogram, not an EKG, every two years.  However, both my PCP doctor and cardiologist still want to do an EKG, but they said only as a precautionary follow up to see if anything has changed - not because they were worried.  My PCP said the report indicates the myxomatous degeration is very mild, the aortic and mitral valves are functioning normally, and they did not seem to be very concerned about this at this time.

To clarify, I am a healthy 46 year old male.  I feel fine, exercise regularly, have no other health issues, don't smoke nor drink alcohol other than rarely.  I do understand that BAV could lead to serious issues, but at this time all my other blood work, CT scan, EKG, nuclear stress test and echocardiogram are all normal other than pointing to the fact that I have this BAV abnormality.   I was planning on requesting these tests again after the two year mark (assuming no other issues come up) just to be sure.  Other than that, do you recommend I take other tests?   One article I read said that while BAV could result in very serious issues, it also suggested that the average lifespan could be similar to that of those without the anomaly.   Seems like I should just keep an eye out for other related issues?    

[kenkeith]

BAV as a syndrome has characteristics that don't lend to a definitive prognosis, and unforunately that may be the concern of any organization that has a financial interest in your health.
Bicuspid aortic valve (BAV) is a tissue disease that often doesn't show any medical problems until the 3rd and 4th decade and  has long been associated with a spectrum of vascular complications such as ascending aortic dilatation, aortic aneurysms, and catastrophic aortic root dissection.

Some patients with BAV have rapidly progressive valve and aortic dysfunction while some remain without complications for a lifetime. The biggest problem I have seen with BAC is an aneursym of aorta (4.0 cm) and a progression to 5.0 cm and the risk of a ruture unless there is an operation.  

If you are past the 4th decade the probability of a medical problem may have been reduced to an acceptable actuarial risk. I don't have the statistics for individuals older than the 4th decade and the associated risk for rupture, but because insurance organization rely on statistics that may be an avenue of thought your doctor may introduce.

Isn't the medical bill that justpassed make illegal to refuse to insure?  

[skydnsr]

Are you sure the cardiologist didn't say you need an echocardiogram every two years, instead of an EKG?  Because the echo test is the one that is normally used to check on valve function.  If he said you need an echo every two years, then I wouldn't necessarily be worried, because if the doctor thought the situation was really bad, he would have you coming in more often than that.  

I would want more detail on how well or badly the aortic and mitral valves are functioning, though.  Sometimes valves can be anatomically abnormal and yet still do their jobs reasonably well.  If that is the case, and if you are asymptomatic, then I would just stay in good standing with a cardiologist and get an echo at the recommended intervals.  

If, on the other hand, the aortic and/or mitral valves are very leaky, then maybe you want to have a cardiologist who specialises in valve disease to look at your echo and give you a second opinion.  You would have to get a CD or DVD of the echo and take or send it to the second-opinion doctor.

The only other thing I can recommend you have checked is your aorta, to rule out aneurysms.  People with a bicispid aortic valve are more at risk for aneurysms all along the length of the aorta than are people with normal aortic valves.  The test for that is a CT scan or MRI.  Assuming you are free of aneurysms on the first scan, you probably won't have to have that redone very often.

As for the life insurance, insurance companies have their own underwriting standards, and a letter from your doctor might or might not have any impact on your eligibility or your rates.  Insurance companies would prefer to issue policies only to people who are going to live forever, so that they never had to pay out any claims at all.  You can try the letter from your doctor, and see what happens.  

Probably your best bet for life insurance is to get in a group that has open enrollment.  Most of those group plans are only available through an employer, either your own or your spouse's.  There might be some other type of group that you can get into, maybe through something like a trade association; I don't know.

For more information about bicuspid aortic valves and aortic aneurysms, you might want to contact the Bicuspid Aortic Foundation.  They have a website.