Bicuspid Aortic Valves

[think]

Recently, i was diognased mitral valve prolapse with mild insufficiency and biscuspid aortic heart valves with mild insufficiency. I have no symptoms. Will I have to have AVR operation or is there any chance that my condition stabilizes at this stahe or to the level that i will not need any operation? or Do biscuspid aortic valves ALWAYS need to be replaced?

 

[aussigal]

Hi Think...
and a BIG WELCOME to VR.com...

As an owner of a Bicuspid Aortic Valve I highly recommend you take the time to have a good read of this website
http://bicuspidfoundation.com

many of us here have the same "special" valve as you ...

you have found the best web-site in the WWW for valve-replacement now friend...

and the BAVD one is full of all the best info on Bicuspid Valves I have ever seen.

cheers
ton

 

[JimL]

I went forty-six years with a bicuspid aortic valve, and lived a mostly normal life. However, when it came time to replace it, it was definitely time NOW. My symptoms advanced rapidly. Why did my valve deteriorate so rapidly? I don't know; I don't think anyone knows. You definitely want to keep an eye on the valve, and discuss with your surgeon when is the best time to have the surgery. I recommend while you're still healthy.

 

[epstns]

Hi, Think,

While I agree with the others, I would also remind us all that there is a substantial percentage of bicuspid valve patients whose conditions never progress far enough to present symptoms or require surgery. I don't recall the percentages, but it is significant.

The best advice I can give is to keep up with your cardio visits and exams. Watch all the test results carefully for changes. If anything begins to change, press your cardio for a full and complete discussion of the meaning of the changes. But above all, live your life in spite of the condition, as well as you possibly can. These things progress at greatly different rates among patients, and it would be a tragic waste for you to spend some of your "good" years worrying about what might be in the future.

Like all of us who have valve conditions but are not yet ready for surgery, careful watchful waiting, especially in the early stages of the conditions, is a good plan.

By the way, welcome to The Waiting Room -- the virtual room where many of us await our own turns at valve surgery. Make yourself comfortable, you may be waiting a while (or maybe not).

 

[Mary]

My cardiologist told me on my second visit that I would eventually need replacement surgery. However, I was suffering from aortic stenosis, and you don't mention stenosis with your valve.
In addition, a bicuspid valve is hard to definitely diagnosis from an echocardiogram. One member was told he had a bicuspid valve, but when he underwent replacement surgery, it was discovered to be a heavily calcified tricuspid.
I think Epstns offers good advice when he says to keep up with your cardio visits and exams. Ask about any changes, and if a change is apt to influence any replacement decisions.
My bicuspid went undetected for 49 years before a murmur was heard. If you aren't suffering any symptoms, and both valves are categorized with mild insufficiency, I wouldn't let my quality of life be impacted by this news.

 

[francie12]

One of our cardiologists told us that 2 per cent of the population are born with bicuspid aortic valves, but of that only a certain percentage go on to needing surgery. Many times these valves are found unexpectedly during a routine autopsy held for different reasons. The valves functioned well over a lifetime even though they had only two leaflets instead of the usual three. Significant regurgition or stenosis though are an indication that the valve may eventually have to be repaired or replaced. These and all bicuspid valves, stenotic or regurgitating or not, must be followed on a schedule and any changes carefully watched. The younger you are when your valve begins to leak or narrow the more likely surgery will be in your future. But it's definately possible to have a BAV and not have it give you any trouble. You're lucky to know about it if you have one so you can premedicate before dental procedures against endocarditis and be on a regular checkup schedule. Good luck from one BAV to another!

 

[tobagotwo]

Here's a link to an older post about bicuspid valves that may answer that specific question and links that might help with others: http://www.valvereplacement.com/forums/showthread.php?p=129768&highlight=bicuspid+links#post129768

You might also want to do an advanced search for the word bicuspid and the user name rachel_howell and also from the word bicuspid and the user name pjmomrunner.

...and don't forget we have a references forum, too.

Best wishes,

 

[think]

thank you all

thank you all

Thank you very much for your care and replies. I understand why aussigal wrote i had found the best web side in the WWW for valve replacement. It is good to know that you are not alone.

When i learned i had BAVs, i was very depressed in the first week. Then the following couple of weeks, i completely ignored my condition. But it was so obvious that it was not the solution. I started to search what kind of advancements are available in this field but emotionally that did not comfort me. Finally, i decided to join this group which, i feel, will be very special for me for the rest of the my life.

I am 38 now and i had no problems except the mild insuffiencies in my aortic(biscuspid) and mitral valves(mitral valve prolapsus).

I do not know when my condition will detoriate neither does my cardiologist. He told me that i might have an AVR operation in the coming 10-20 years or in less that 5 year time. As far as i understand the progress varies a lot from person to person. Currently, i do not have any aortic stenosis. Only a very insignificant calcification in on of my biscuspid aortic valves(the left one).

He advised me to keep on my living without any restriction but to have a yearly regular check up.

I hope that most of us will be lucky enough that we will be among the BAV patients whoese conditions never progress far enough to require surgery and we keep waiting. But i think that this is a quite small chance after a heart murmur have been detected as francie12 sugessted. But still thank you Steve and Francie12 for your encouraging lines. Good luck for Matt too.

Mary, you can be sure that i would not let my quality of life be impacted. I started to appreciate my life better now. Thank you for your advise.

Your post was very helpful, tabagotwo. İ added your links to my archieve.

Once again, thank you all for letting me feel i am not alone in this journey. I hope that this will be a long and comfortable journey for all of us.

 

[think]

My echo results are as follows.

İ had 2 echos within 2 week time and the results were different

Aortic root diameter   3,5      3,5
Aortic leaflet width    1,8     1,7
Interventricular septum   -       0,9
Left ventricle  diastolic diameter  5,6     4,9
Left ventricle  systolic diameter    3,8     3,0
Left atrium   3,9     3,6
Right atrium   -       3,5
Right Ventricle -        2,5 
Postero-lateral wall thickness  -        0,8
Ejection Fraction    60-65    65
Fibre fractional shortening  -          39

Can anyone tell me what those parameters are saying? And why some of them differs to such a large extent. Thanks in advance for your comments

 

[Marguerite53]

Hi Think. Welcome. Isn't this place just amazing??!!

Those numbers look fine (as far as I can tell, which isn't saying alot). I believe a normal aortic valve opening is 1.5 to 3.0 cm squared. I'm 52 and hovered at normal (1.5) for more than 20 years. I had 3 healthy babies, 3 uneventful pregnancies and a normal, wonderful life. I ALWAYS premedicated before dental visits and other invasive procedures to ward off Endocarditis. I had regular echoes (every 5 years, then every year when things started to tighten up). I listened carefully to the list of symptoms and the minute I started feeling symptomatic on a regular basis (why, when I run up the stairs am I out of breath?? Why does moving my furniture around to clean make my heart pound out of my chest? What is this lump in my throat feeling that always occurs at scary movies? Why is my heart all flippy floppy for no reason?) I hightailed it to the cardio and sure enough, the stenosis (which was never actually mentioned to me in those 20 years) had started to worsen. And for no apparent reason. We tried to manage things with medications (blood pressure lowering) but now that the worsening had begun (aortic valve measure went from 1.2 to .53 in 2.5 years) I will be scheduling my surgery for April.

Others will be along to evaluate your numbers. There is a link in the resources section of the forum under Best resources to help decipher echoes but I find that remarks from others are more helpful. Your ejection fraction is an important measure and yours is normal.

So, 3 things here. ALWAYS premedicate before dental and other invasive procedures. KEEP A WATCH on your blood pressure. There is thinking that keeping it below normal will add longevity to the narrowing of the valve...you might want to ask your cardio about that. and 3... ENJOY your life and do not worry!! You have good information and are getting more all the time so you can relax and know that the knowledge you are gathering will probably extend your days of wellness for a long time!!

Marguerite