Misdiagnosed BAV

[rareed]

Hi all,

I was told back in 2008 by my cardiologist in Charlotte, NC that I had a bicuspid aortic valve. Made sense since I had an ascending aortic aneurysm to go along with it. They removed the aneurysm and put a graft in when I was 19 and all has been well since. I moved out to Kansas City last June and decided I need to get my heart checked this winter. I went to Mid-America Cardiology at KU (the place is huge!). My new cardiologist did and echo, ekg and what not to get some baseline results. After reviewing the echo a few times she stated that I do not in fact have a bicuspid aortic valve! Being a physician she was frustrated that my old cardiologist diagnosed me with BAV. She actually called me again from her cell later that night and told me she once again reviewed the echo since she was confused as to how they diagnosed me with BAV. She said that her and a colleague looked at the echo and saw a very tiny partial fusion (about 1 mm) near the very beginning of two of my cusps. She said if in previous echos they did not take enough images they would believe it to be a BAV. I'm glad I actually do not have a BAV, but she said that I do have slight leakage and that the two cusps that are partially fused are thickened up with some calcification present. Who knows if I will have to get it replaced years down the road (I'm only 23 now). Anyways, I just wanted to kind of ask you all if any of you have had a misdiagnosis like this?

 

[DebbyA]

I had a bicuspid valve, but early on got a diagnosis of mitral valve prolapse and lived with that assumption for about 10 years. I'm interested in your "misdiagnosis" label. Like you, I relocated about a year ago, and got noticeably different results from an echo by my new cardiologist, but it left me wondering if it is just a difference in imaging styles. She and her tech say no way. (I have no symptoms.)

I've been reading Jerome Groopman's How Doctors Think, which you might find interesting in part because he writes about the ways doctors might come up with divergent diagnoses.

(I grew up in Charlotte, but left at about your age.)

 

[valdab]

That's interesting - I, too, was diagnosed with 'possible mitral valve prolapse' about 30 years ago when I was in my early 20's. Subsequent check-ups both in the U.S. and U.K. confirmed this, but I was told it was borderline. I was subsequently signed off about 15 years ago. The BAV was eventually diagnosed three years ago (age 51). I have often wondered if it is really that easy to confuse the two or maybe I have MVP as well. Thanks for the book suggestion - I shall chase it up.

 

[caligirl]

Hi,

If I were you I would seek another opinion from a center that specializes in BAV and Aortic Aneurysm's. I was diagnosed with BAV in May of this year, and just like you have a small fusion of my R and L coronary cusps, which is considered a Sievers Type 1 BAV. Just because the fusion is small, does not mean its not a Bicuspid Valve. My diagnosis was confirmed with 2 echoes and a CT scan. I would bet that your first cardiologist was right, especially considering you had an aneurysm (which I am told by my Stanford cardiologist happens in 50-70 % of people with BAV), and now regurgitation and stenosis of the valve.

 

[scott.eitman]

Hi,

If I were you I would seek another opinion from a center that specializes in BAV and Aortic Aneurysm's. I was diagnosed with BAV in May of this year, and just like you have a small fusion of my R and L coronary cusps, which is considered a Sievers Type 1 BAV. Just because the fusion is small, does not mean its not a Bicuspid Valve. My diagnosis was confirmed with 2 echoes and a CT scan. I would bet that your first cardiologist was right, especially considering you had an aneurysm (which I am told by my Stanford cardiologist happens in 50-70 % of people with BAV), and now regurgitation and stenosis of the valve.

I agree with Caligirl.

 

[Jayhawk]

I am also a patient at Mid-America Cardiology. I see Dr. Mulhern. He is a specialist in Adult Congenital Defects. I wonder if your Dr consulted with him? He is fantastic! I don't necessarily disagree with the seeking another opinion but I don't know where in KC you will find better heart care. Maybe St Lukes? Good Luck. I know its disheartening to get a diagnosis and then get your mind wrapped around it and then the rug is taken out from under you. Leaves you feeling out of sorts, I am sure.

 

[rareed]

I am also a patient at Mid-America Cardiology. I see Dr. Mulhern. He is a specialist in Adult Congenital Defects. I wonder if your Dr consulted with him? He is fantastic! I don't necessarily disagree with the seeking another opinion but I don't know where in KC you will find better heart care. Maybe St Lukes? Good Luck. I know its disheartening to get a diagnosis and then get your mind wrapped around it and then the rug is taken out from under you. Leaves you feeling out of sorts, I am sure.

Hmm maybe she did consult with your doctor, I see Dr. Hannen. Anyways, I don't think I will be going to get a second opinion because like you said, Mid-America Cardiology is pretty much the best of the best out here. I'm pretty sure it's ranked #24 out of the top 100 cardiology programs! Regardless of whether I have BAV or not I still have aortic stenosis and regurgitation so I will be going in once a year and alternating echos and CTs every year. My cardiologist is going to double check my previous medical records from Sanger Heart and Vascular institute in Charlotte and is requesting my surgical records from when I had my aneurysm removed.

Thanks to everyone for their thoughtful replies! I appreciate it!

 

[tom in MO]

I agree with caligirl. If one doctor says you have it and another says you don't, I'd go to a third, not associated with either hospital or doctor. Have the third doctor look at your tests for a final opinion. KU has a good cardiac program, but St. Lukes right next door is just as good (or better ), so it should be easy for you to get another opinion.