“Bicuspid Aortic Stenosis… Do I Have A Disease?” Asks Ellen
Ellen has a question about stenosis and bicuspid aortic heart valves.
She writes, “Adam - I am 39 years old. I was just told that I have bicuspid aortic stenosis. The doctor said it’s not serious yet. Still, I’m freaking out that I have some form of disease that is going to kill me. Obviously, I’m not a big fan of my cardiologist right now. He didn’t explain it at all. Can you help? Thanks, Ellen”
There’s no easy way to respond to Ellen’s question…
Yes, bicuspid aortic stenosis is considered one form of heart valve disease.
However, on the bright side of things, bicuspid aortic stenosis is completely treatable. As I personally learned, heart valve replacement and heart valve repair procedures can surgically correct most forms of valvular disease including aortic stenosis, or narrowed heart valves. That is very good news. 
Now, as for Ellen’s bicuspid aortic stenosis diagnosis…
- First, it sounds like her valvular disorder is relatively mild or, perhaps, slightly moderate. I think if Ellen had severe aortic stenosis, her physician would have been much more proactive.
- Second, it sounds like her doctor isn’t the best at communicating. If I was Ellen, I might consider finding another doctor and a second opinion. My first cardiologist was the worst. Even to this day, I refer to him as Doctor Bad Bedside Manner.
I hope that helps Ellen - and perhaps you - learn more about bicuspid aortic heart valves with stenosis. So you know, my bicuspid aortic valve was replaced due to severe stenosis in 2005. Three years later, I am doing great!!!
Keep on tickin!
P.S. To leave a comment, please click here.
About The Author: Adam Pick is a double, heart valve surgery patient and author of The Patient’s Guide To Heart Valve Surgery. This unique book integrates the clinical facts of heart valve surgery with the personal experiences of 78 former valve surgery patients to help patients and caregivers better understand the opportunities and challenges of heart valve surgery. To learn more about Adam and his heart valve surgery book, click here.
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June 1st, 2009 at 9:34 am
Ellen,
Yes, you have a heart disease, but rest assured that it is treatable! I had the same thiing: a biscupid aortic heart valve that began to calcify (stenosis). When a heart valve calcifies it cannot open sufficiently to allow proper blood flow. Find a good heart doctor that you like now! Have your heart checked regularly because the calcification can happen quickly in some patients. I put off seeing my heart doctor at the beginning of my stenosis and be the time I saw him again it was time to find a heart surgeon and schedule heart surgery because the calcification had advanced so quickly. I am not trying to scare you, but you need to find a heart doctor that communicates well and one that you like, so you can get the information you need.
I had aortic heart valve replacement surgery Sept. 2nd, and it went very smoothly and I was back up and going quicker than I thought. Adam’s book is a great resource, and so is this web site.
Keep asking questions throughout this whole process - you will feel better having communicated with folks that have already gone through this. There are a lot of us out here!
Sarah
June 1st, 2009 at 11:12 am
Sarah,
When I was your age I was diagnosed with a heart murmur. It was very faint so nothing was done. I am now 61 and am 4 months into my recovery following aortic valve replacement as a result of severe aortic stenosis involving a bicuspid valve. The ensuing years I lived a very active life. I am well on the way to recovering and feel better every day. Be thankful that you know have the diagnosis so you and your Dr. can monitor it. If and when you do need it replaced the technology is evolving where it may be possible to replace it using the femoral artery.
June 4th, 2009 at 8:09 pm
Don’t freak out, Ellen!! A bicuspid aortic valve has 2 leaflets that open and close instead of the normal 3, so the opening is a bit smaller than it should be and the blood has a bit smaller opening to get through. I had exactly the same condition as you–my pediatrician noticed something strange with my heartbeat when I was 2–I started seeing a cardiologist yearly by the time I was 5. At age 49, 3 years ago, I had my bicuspid aortic valve replaced with a mechanical St. Jude valve and am doing fine.
It is important to have a yearly check up with a cadiologist–find a different one if you don’t like the one you have now. Sure, the thought of surgery is scary, but there are so many, many people who have had it and have gotten along great, like me!
June 13th, 2009 at 8:41 pm
Ellen,
I am an echocardiography tech, and I just came upon this site today, WOW I am going to get Adams book.
Please try and not worry, easier said then done. A person is born with “two leaflets, bicusipid valve” or the three leaflets. You have the two leaflet. When the aortic valve opens and closes it closes by a two leaflet or a three leaflets, I use the anology that the leaflets look like a “Piece of thread”. A person like yourself and many others being born with the two leaflet will have heart surgery in thier 40’s, 50’s and 60’s. Those born with the “three leaflet” can have their surgery when they are 60’s 70’s 80’s. What happens is the leaflet gets “tired” and forms a white calcification on the leaflet, being that you have a two leaflet, that happens sooner in life. This calcification is called schlorosis then as the schlorosis gets thicker the opening to the valve gets smaller and then you over time will have Aortic Stenosis. You will be watched more closely by your Cardiologist and have more frequent echocardiograms. When the doctor starts having you have more then one echocardiogram a year, he is watching to see the size of the aortic stenosis, when it gets to a certain “criteria” they then will replace or repair the valve. There are many great cardiologist and cardiovascular surgeons who will help you along the way. If you are not happy with the way your doctor treated you, move onto another as that one is not for you. Find the one that can explain or have one of his staff members explain to you. Request that you speak to a surgeon and see what your options are, as he will tell you from reading your echocardiogram and other things when surgery might be. Be proactive in your journey, there are so many success ahead of you and you will be as well. Remember this YOU ARE IN CHARGE, they are all working for you
to make you better. Good luck 