BAV and Aneurysm

[JohnAdams]

I am an active 38 year old male, I found out I had a BAV in the early 90’s. I started experiencing chest pain and SOB about 2 months ago, cardio dismissed it as not being heart related. He performed a TEE anyway and found that my BAV now has severe regurgitation and I have an ascending aorta dilation measuring 4.4cm (revised down from initial of 4.7cm), aortic arch at 4.5cm, mildly dilated descending aorta (no measurement provided) and left ventricular hypertrophy. I was also told my aortic root will need to be replaced during the AVR. My last echo was 3 months prior and the regurgitation was moderate and no mention of any other issues. I mountain bike on a regular basis (3 to 4 times a week) and routinely drive my heart rate into the 180’s. My resting heart rate is 45. I also take prinivil, my BP is not high but Dr wanted it lower. I am concerned about the chances of dissection or rupture (I understand it is still small and chances of anything happening are extremely remote) and wonder if it is time to seek a surgical consult or as my Dr has suggested just continue to monitor every 6 months. I feel I should at least be meeting surgeons at this point to find one I am comfortable with. Also, can you provide any additional links to papers or related research dealing with the aorta and the work that I would need done? I have found some but they only deal with pieces not the entire thing. Your opinion and assistance is appreciated. Thanks.

[CCF-M.D.-MJM]

Hi John,

I think your assessment is right on the money -- although I would seek the second opinion of a cardiologist, not a surgeon.  Surgeons are very good at a surgery but leave it to the cardiologist to help you decide when you need to have a surgical repair/ replacement of your bicuspid aortic valve (BAV).  You are correct, you will likely need an aortic root replacement at the time of surgery.  People with bicuspid aortic valves are at increased risk for aneurysms and dissections.

When you seek a second opinion, it is VERY important that they have the old echo film/tape and not just a report so they can assess for themself the degree of progression.

You are also correct that your risk of dissection is currently remote, but will increase as the size of your aortic root increases over time.  The most important thing for now is that you have symptoms from your leaking valve and this is why I think a second opinion with a cardiologist will help.

From what you describe about your self this is a relatively low risk procedure in the hands of an experienced operator (this is my politically correct way of saying that if you need surgery, make sure your surgeon is exerienced).  

I hope this helps and good luck.

[mbimom]

I was wondering if you had an echo before he did the Tee. I also have BAV and have been having chest pains. I had to have a Tee to be diagnosed, they couldn't tell by the echo. When I went for my yearly check up he just did an echo and said that there was some change but not enough to do anything about it yet. I wonder why he could tell this on a plain echo and not sending me for the Tee like he did when he first suspected BAV. My doc doesn't give me the exact measurements like you have, did you request that or did he just offer it to you. I would appreciate your thoughts.  Terri

[Jjc2005]

Hi John
I think you need to find a surgeon who is experienced with aortic dissection, and does aortic root replacement and talk to him/her for another pov.  I am a 59 year old female who recently (May 11th) underwent open heart surgery to have my aortic root replaced.   I was measured at 4.5cm at the time. The cardiologist took a "let's watch it"  approach while  the surgeon felt I should have the surgery asap, at a time when I was in good health.  But I also had a family history to share.   I had a paternal Aunt who dissected in 1985.   She nearly died but did survive the surgery and lived to be 80 dying from cancer, not heart disease.  But back then no one informed our family that there could be a genetic connection.  
In 2001, a paternal male cousin, age 51, dissected and died, and three years later my sister dissected and died.   We did not know that my male cousin had an aortic root aneurysm until autopsy.   My sister had an aortic root aneurysm of 4.5 and dissected.  She died in the ER.  My surgeon considers it still to be a gray area when it comes to this aortic problem.   I had to make the decision whether to watch or do something.   My recovery was smooth.   I was walking two miles just two weeks after surgery and by four weeks I felt back to normal.   It was worth it for me to have peace of mind.
Good luck to you in whatever you choose.

[JohnAdams]

Thank you for the responses. I am comfortable with the guidance of my current cardioligist, we have had a good relationship so far and he is highly regarded. I had some concern that he was not being aggressive enough but feel more comfortable following his continued guidance from your response.

mbimom - I have been having annual echoes for many years now. I always go for my echo first, get the results mailed to me, write any questions I have and bring it all with me to my appointment and review it with my doctor. That is why I am able to get the numbers.
My TEE was not a normally scheduled appointment, it came just 3 months after my last one because of a sudden onset of symptoms when I had never had any before. There was a stark difference between the 2 tests (echo and TEE) but my Dr told me it may have been like that for some time but just not picked up by the echo.

Jjc2005 - thanks for the response. We have no family history of heart related issues on either side of my family. Not sure where I got my wonderful genetics from.

[francie12]

You might want to check out this excellent site: valvereplacement.com.  It is extremely informative and supportive.

[Tessie0707]

I too have a bi-cuspid aorta valve. In my annual checkup with my primary doctor, an echo showed I had a 4.5 cm aneurysm and a CT was scheduled. I had the CT scan where a dye was used and the actual measurement of the aortic aneurysm is 4.8 cm and I was forwarded to a cardiologist.
He went over the results with me, and although he did a good job explaining things to me, I now have tons of additional questions that he was not too concerned with. He said eventually, I will need to have surgery to replace the valve and he placed me on Metoprolol Tartrate...a beta blocker, two times a day, of 50mg each for the first 30 days.

He told me I had two goals, one to keep my blood pressure down and 2nd, keep my heart rate down.  I told him I work out vigoursly at the gym 5 days a week for a solid 90 minutes each. He said that was ok. How does one work out while keeping your BPM lows?

Anyway, is open heart surgery the only alternative.
Is there an immediate need to do this now?
Am I really in great danger?

He told me he'd see me in 6 months and take another ct scan then.  My family is freaking out thinking there is a time bomb in there, and that I should schedule open heart surgery ASAP.
I'm 53 years old and in perfect health, other than hypothroidism that I've had for 30 years.
Your thougths please?????????????????

[long]

Doctor told me that mri/mra is "gold standard" for aortic root and ascending aorta (aneurysm & dissection) assesment. Why was CT scan done instead of MRI? Where is your 4.5 or 4.8 aneurysm located and what is your acceptable heart pulse rate as well blood pressure during 90 minutes of exercise according to your doctor and cardiologist?My cardiologist does not allow vigourus exerise for persons with aortic root and/or ascending aorta measuring over 4 cm.