how do I put this

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bird lady50

I really dont know how to put this. Well here goes.can anyone tell me on here rouglhy. how long it takes for a bav to start getting disesased or going wrong. Do they all get worse or do most people with bavs have some form of the valve getting stiff or leaking. Or other arotic issues.. All the info I have read it say that most poeple with bavs end up have an op in one form or other form . Is this correct.
 
Bird Lady,

I'm not sure I can answer this, but bileaflet aortic valve is a disorder. The valves of the heart are designed with 3 leaflets for the best anti leakage and the best flow of blood through the heart. When you have a bi-leaflet valve, there are only 2 overlapping valves. They are neither as efficient at opening or closing...it is a flawed design. As a result the pressures on the leaflets are greater when closed, causing leakage (insufficiency). Also, calcium tends to collect on the leaflets because they do not open as freely as the 3 leaflet versions causing stenosis.

We have a saying around here, once the valve starts getting worse, it gets worse faster.

I would say that eventually most bi-leaflet valves are replaced if they are diagnosed.

Hope this helps.
 
thank you Kristy. So it is a wait and see thing with bavs. You never know how long it will be before the valve gets worst.
 
Everyone is different I am sure. My husband had his BAV replaced at 51. He had very few symptoms. His blood pressure went up very high at age 50 and they did an EKG at our PCPs office, who sent him to a Cardio who did a echo,he was then sent to the surgeon and set up for Cardiac Catherization and then set up for his valve replacement.
 
I never really had any problems although I had been told many years earlier that I had a heart murmur.
Then in my late fifties the valve became heavily calcified and I was in bad shape. Supposedly the calcification was due to having rheumatic fever when I was very young.
Rich
 
I do not know how reliable this information is but our cardiologist told us that on AVERAGE a bicuspid valve will speed up the stenosis process by twenty years from a tricuspid valve. He said the AVERAGE MALE who will have degenerative aortic stenosis will be in his 70's, the AVERAGE BAV MALE will begin having problems in his 50's. I do not have significant studies or information to back that statement up and my husband is in his 20's and is having significant difficultes from his heart, which maybe he is just not average. I have been told over and over that BAV is different in every person, as some perople live with a BAV their entire life without any difficulties and without ever developing stenosis, while others follow the average group and are in their 50's when they begin to have problems, and then a few such as my husband, have difficulites much earlier. There is also the complication of aneurysmal disease that goes along with it for some, but not for others. I believe there are many different factors that contribute and it is just best to be followed up on a yearly or bi-yearly basis to stay on top of the disease.

Diana
 
I had a murmur at 13 ish...

I had a murmur at 13 ish...

... and was told that "SOME DAY" I would need to have it replaced. Since then I lived my life and was pretty much a-symptomatic. I had a few fluttery heart beats every now and then and it took me a while to get in to shape for the police academy in 2005. Other than that, no swelling, no nothing, just a "MURMUR" that I had had for years. Then a doctor wouldn't pass me for a police medical for another department. Went to get an echo and stress EKG and then a CARDIAC CATH. The Cardio that did the Cath handed me a card for a surgeon when I was done. I then started to think that the SOB I was feeling may not have been from being out of shape. Perhaps there was a reason I couldn't ride my bicycle on the streets of Atlanta like I had 6 months earlier. I guess once it starts to get BAD it goes fast! My wife had a GYN. that was a marathon runner and one day he couldn't walk across the room. He was out for 6 months +. This isn't anything but anecdotal evidence but it seems to support what I know.
 
Re: time from BAV detection to surgery

Re: time from BAV detection to surgery

I had a heart murmur diagnosed when I was in my 20s. I had my aortic valve replaced last year, when I was 58.

The time of the surgery in my case was determined by symptoms....shortness of breath on exertion, chronic fatigue and a tendency to want to faint when I stood up quickly after squatting.

Echocardiograms tell how much blood is being moved through the valve...a thing called the ejection fraction. My cardiologist increased the frequency of the tests to every six months before the surgery was done in Boston.

P.S. Just got back from my sixth trip to the U.K. You have a wonderful country. (London four times, Ireland twice.)
 
My murmur was first noticed at five years old, and I had my first catherization at age 15 which confirmed my BAV.

Made it until I was 47 before I started displaying symptoms and had my surgery with less than a year later. That was eight years ago - everything has been fine so far.

Mark
 
thanks

thanks

Thank you for your repiles. So I just have to play the waiting game.. It could go bad in the next few months or in the next few years then. They found the heart mumur when I was 26. I am 49 in october. All I know at the mo is I have a bav and it will need replacing at some time.
 
bird lady50 said:
Thank you for your repiles. So I just have to play the waiting game.. It could go bad in the next few months or in the next few years then. They found the heart mumur when I was 26. I am 49 in october. All I know at the mo is I have a bav and it will need replacing at some time.
Click to expand...


I think you can get a much better time frame from the cardiologist. Have you had an echocardiogram? Can you get ahhold of the details of your echo?

If you have stenosis; the hardening/calcifying of the valve, then your valve is crusting up and closing little by little. They measure the Aortic Valve opening. I think a normal valve opening is somewhere around 2mm squared. Don't know why they use the squared...that's just how it is done. My cardiologist said that once the measurement gets to 1.0 mm squared it is generally around 1 to 3 years until valve replacement.

Then there's the potential damage that may be occuring to your heart as it works to compensate for weakening valve...whether it is stenosis, or the opposite -- regurgitation (loose, flappy opening and closing). This is very slow damage and as far as I can tell VERY individual. The cardiologist watches this piece of the picture very closely. Your heart is a muscle. The harder it has to work, the thicker it becomes. Unlike all our other muscles (which we may wish were more taught and firm) the heart likes to stay the way it was built. So if your system begins to have to work extra hard, and the wall of the heart become thickened or enlarged to a certain extent ( a numbers game) then surgery will be advised.

For me, my murmur was discovered in my late 20's. Stenosis began 20 years later. Aortic valve opening found to be 1.0 and 3 years later had closed to .53 and I went in for surgery. .53 was deemed critical. My cardiologist said she likes to call in the surgeon at .7. I suddenly had to push my date 4 months away for other medical reasons and the change (the closer it gets, the faster it goes) was rather dramatic in that time frame. But it had already dropped below that magic 1.0.

So please get some more information from your cardio. You have a right to understand the probable progress of your condition in much better detail. Depending on the severity of your current state, and what they are finding, you can learn to rest easy about the waiting (well, sort of!!! the waiting is the hardest part!!)

Please ask us anything. We can help you to understand. Best to start new threads with each new type of question, then more people here on the forum will see it.

Best wishes.

Marguerite
 
Try to get copies of all your echoes so you can compare them to see if there's any changes occurring over time. If the computed valve opening seems to be getting smaller, then you're getting closer to needing surgery. Don't put any confidence in any doctor's estimate of how long you have till you need surgery. You need it when you need it. BTW If your cardiologist doesn't think you need it and you think maybe you do, go see a surgeon, if you can (I don't know what the rules are under the NHS) Plus, be on the lookout for symptoms. They can sneak up on you. You might think you're just getting out of shape, when it's shortness of breath caused by your valve. Chest pain can also feel very different to different people. Tell your doctor about any chest discomfort you feel. I was having chest pain and didn't realize it for awhile.

Other than that, have regular echoes and enjoy life! <grin>
 
Pain isn't necessarily a symptom of your valve, but if you have it you're obviously in a higher risk category when it comes to anything heart related. I've had some kind of pain since my mid teens, I'm still kickin and I haven't had surgery yet.
 
I was diagnosed with aortic stenosis when I was 2, back in 1956. At the time they wanted to wait to operate till I was 10 or so because of my size. In 59 they operated as they didn't think they could wait any longer, my condition was worsening. Now mind you they didn't have replacement valves at that time. I was told that I would need a replacement by the time I was 30.
Well, I finally had the replacement in 06 at age 52. thing is my cardiologist said if the valve had been my only thing to deal with it would not have needed to be replaced yet. But there was this 5.8 cm aneurysm of my aorta that they sort of wanted to take care of. And because the root was also enlarged they did the valve as well.
So according to my cardiologist my valve was actually doing just fine at age 52.
Now there are different types of BAV. One is where you have a tricupid valve with 2 leaflets fused together creating a bicuspid valve, the other is where the person has truely 2 leaflets. In my case I had totally symetrical 2 leaflets.
 
they have not told me what sort of bav it is. Only that I have one.
 
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