What do I need to ask about my bicuspid valve?

[67walkon]

This looks like a great resource!

I'm a 57 year old guy with a bicuspid aortic valve. It has never bothered me; I am very active, riding a road bike about 100 miles a week. My resting HR is in the mid 40's and I can cruise all day long on a bike at 17 or 18 mph at a HR between 120 and 130. I've never had any symptoms.

Last week, I had an echo and the tech told me something was now down to about 1 cm, when it should be about 3. I think it was the valve opening and I think he said it was about 1/3 of what it should be. I see the cardiologist tomorrow and I know the techs aren't supposed to tell you what the tests show, so I won't get him in trouble.

To complicate it just a bit, I have a past history of paroxysmal aftrial fibriallation. With a med called Rythmol SR and staying off caffine, I haven't had any issues with afib for about 1 1/2 years.

I gather from reading here that a tissue valve or a Ross procedure would keep me off coumadin. At several times when my afib was more active, different docs put me on it and it is really difficult to keep it at the right levels. Plus, I am too active to want to risk it.

So what do I need to ask the cardiologist? And what should I really pay attention to? Assuming the tech read the computer right, it seems odd to me that the opening could be dimished by 1/3 without me having any symptoms.

Thanks for your help.

 

[Mary]

I'm glad you joined us, walkon. Most members with a bicuspid valve experience no symptoms until the valve starts deteriorating due to calcification. I wasn't aware that I had a bicuspid valve (no murmur) and few symptoms, until a routine check-up in 2001. By the time 2005 rolled around, I was having significant problems as a result of the stenosis.
As several have noted, once a valve starts "going bad", it seems to go bad at a much faster rate.
If you've had occasions of a-fib, where you've been prescribed coumadin, you should keep in mind that you might have your valve replaced with a tissue valve, and still end up needing coumadin for your a-fib.
Many people on the site have reported great success with coumadin management--particularly when they have their own home testing units.
However, you may deal with medical professionals, with little anticoagulation experience, that will continue to retain control over your course of therapy.
You didn't say how often you have echos, so you might ask your cardiologist if he/she considers your rather sizeable drop in valve size opening to be significant. It might indicate a sooner, rather than later, replacement in your future.
Once again, welcome to our world!

 

[Susan BAV]

Welcome to the site! I'm wondering if Ross, the Administrator, will move this thread to another forum though, where it may get more views and comments. Please don't assume your cardio will be completely familiar with your medical history by just a look at your chart. You may have to remind him you are bicuspid and you have had trouble with A-fib and then let him tell you how bad the valve has gotten. As Mary indicated, frequently when valves start to go bad, they can fail rapidly. There is quite a bit of research you can do here about bicuspids; you might also want to research the bicuspidfoundation.com website. Take care and post again.

 

[StretchL]

Hi, Walk. Welcome to the forums.

Tissue valves or a Ross Procedure will keep a patient off Coumadin IF the patient doesn't go into afib due to the surgery itself. My surgeon told me that this happens in 20% or so of open heart patients.

So there's no guarantee you won't be on Coumadin no matter which valve procedure you choose.

FWIW, I think that given your age you're pushing the envelope a bit for suitability for a Ross.

 

[tprice54]

Welcome

Welcome

Welcome walk....let me reiterate, valves can go fast, once damage has started. I was fine until last April, ran a half marathon in September, couldn't run a mile in December and had a new valve installed in January, just to give you an idea. But, do keep in shape, keep biking. The better shape you are in whenever surgery arrives, the easier the whole thing is.

 

[Cooker]

Welcome!

You will get all the information here that you could want, good information. And a bunch of opinions

Valve choice will not guarantee that you will not have to take warfarin in the future. I have a mechanical valve and have had no problems with being on the drug.

Best of luck,

Cooker

 

[Mike C]

Ask for your dimensions of aortic root, ascednign aorta and arch and for cardiologist opinions.

aneurysms in ascending aorta are related to bicuspid aortic valves.

 

[Marguerite53]

Hello and welcome to our world!

Cardiologists can be evasive because they don't want you to worry. They can avoid giving you a list of symptoms because they don't want you to suddenly realize that you are having them. Often the symptoms are attributed (by us, the patients) as old-age approaching (tiredness, weakness, shortness of breath at the top of the stairs, chest pain so dull and mute that we attribute it to indigestion). What you may find out, in the long run, is that when you are advised to get surgery, and when you fully recover from it, you will realize that you had a LOT of symptoms and just did not attribute them to your failing valve.

Cardiologists tend to want to wait until the valve is absolutely strangling the pumping blood to get through. (okay, that's a bit of an exagerration, but many of us have stubborn cardiologists). They may tell you that it is best to hang on to that native valve as long as you can because up to a point, it is not endangering your life. When the numbers change......when the heart begins to enlarge past a comfortable range (the heart will "remodel" itself back to normal after surgery....ususally) or when the ejection fraction changes (the thrust with which your heart is pumping out the blood....think of a garden hose with no nozzle.....water flows out freely....with the closing of the valve..probably aortic stenosis due to calcification......the pumping blood is getting messed with as if you had your thumb over the nozzle....there is back up pressure, and the water (blood) is forced out at an unnatural rate). So there is this golden period when it is perfect timing to replace the valve (since you are a lucky one who is under care....you are being closely watched.....some, here had emergency situations because their entire event was a complete surprise). That time is before the heart has to compensate for its problem by enlarging. Certainly other factors may indicate sooner surgery. Many of us are of the belief that you should intervene before you give your heart the chance to go downhill.

My first cardiologist said that once my valve hit the 1.0 mark it generally means surgery within 3 years. He was right in my case. I changed cardios because there is a woman of high reknown in our town who was attatched to a much larger, more state of the art hospital) and this first gentleman was foreign and I honestly could not understand him well enough. Getting a second opinion was very helpful, too.

You need to ask your cardiologist EXACTLY what his practice is. When does he call in the surgeon. Mine said, when my aortic valve measure hit .7. You need to ask him about how your heart is changing, how is it compensating, what do those changes mean, what does he look for in the changing and why. You need to get a full appreciation of how he handles this disease...does he wait until you can barely function before he calls in the surgeon, or is he of the more modern mind set that sooner is better (for surgery) Definitely, the warning flags are now flying for you since you have hit 1.0. That is usually the standard. If I were you, I would see if he is willing to do an echo on you every 6 months from now until surgery. Things can go downhill rapidly (well, you know, in a matter of months, not days, usually) and with not apparent symptoms to guide you, you will want some pictures. Be sure that they looked for any aneurisms. Did they tilt your head back and take some echoes in your throat region? You want to be sure that you got a really thorough echo. Ask for a copy of your report (and perhaps a copy of some of your past reports) and bring them to us...we can help you read them and decipher the numbers. Ultimately, your doctor needs to explain your numbers to you.

Put together a list of questions on a piece of paper and take them with you. Don't leave until you have a satisfactory answer (that you actually understand! ) from the doctor. Ask if there is a nurse in particular whom you may call from time to time with questions. Establish a good rapport with the office staff so that you can have all your questions dealt with easily in the upcoming visits.

When researching/deciding the type of valve it does sound like you need to keep your afib in mind. I would definitely ask both the surgeon and cardio for advice on that. Many of us with tissue chose it to avoid the coumadin. It's not that coumadin is a bad thing, quite the contrary, but some of us are not programmed to manage things, or add management like that into our lives. If I knew I had afib tendencies, I'm sure I'd have really looked into the mechanical option much closer. Our advice on all that is pretty useless...you are the patient. Just get more than one opinion and your intuition will tell you what choice to make.

Okay...I'm out of breath....someone else's turn!!

You'll do great. Read a lot here, use the search button to guide you to some particulars. Start as many new threads as you'd like, asking new questions. We're all SO VERY GLAD we found each other...I'm sure you will come to feel that support here, too.

Marguerite

 

[67walkon]

Thanks much. The appointment is this afternoon. The questions are good ones and I'll get a copy of the report.

I had already done a little research on the valve replacement/afib issue before finding this site. My bicuspid valve was discovered 4 or 5 years ago, so this isn't totally new to me. Although, I never heard of the Ross Procedure before and never have checked into what is actually involved with valve replacement; it was something that I knew had to deal with someday, but it wasn't urgent.

The historic "gold standard" for fixing afib has been what you guys guy OHS--it is referred to as the "maze" procedure, and there are some more recent minimally invasive versions. My afib was never persistent, never brought on by exercise, but was vagally mediated or, in my case, came on at night when relaxed. Stress management has helped.

When they replace the valve, I've always hoped I could get them to do the maze or some version of it at the same time. If they can't do it at the same time, I still don't want to take Coumadin long term because I don't do well with it and I have to worry about closed head injuries and the like.

I'll try to get the report and see what you guys think. Probably if the root and all that is is ok, I might be able to get another year or two, but then again, it might be weeks or months.

Thanks for all your help and concern.

 

[MrP]

As a BAV patient, insist on a CT scan or MRA to accurately measure the ascending aorta, arch, and descending aorta. An echo will only provide limited visibility of the ascending aorta and not as precise as CT scan or MRA. At a minimum, this measurement will serve as a baseline and also give you peace of mind.
All my best,
MrP

 

[67walkon]

I didn't see MrP's suggestions before my appointment.

Here's the good news. No restrictions on my activities. Re-check in 6 months. Aortic stenosis has progressed from mild to "moderate".

Here are the numbers from the echo:
left ventricular systolic function normal with estimated LVEF: 60-65%.

The peak gradiant across the AV is 50mmHg with a mean gradient of 30mmHg.

THe calculated aortic valve area by continuity equation is 1.0 cm square

"Aortic stenosis, moderate"

There is a note of mild pulmonary systolic hypertiension with estimtated PSBP approx 37 mmHg, assuming RASBP of 10 mmHg. This hasn't changed since 2002, she said.

I don't know what the numbers mean. The cardiologist says re-check in 6 months, do whatever I want to do, but call immediately if I have any symptoms of shortness of breath, chest pains or fainting.

I guess that's good news. She wouldn't predict any time periods. "Lets hope it stays the same for a long time, but sometimes they start changing faster when they get to this point."

So what do my numbers mean?

 

[Bionic Man]

I had one too

I had one too

I had a bicuspid valve with significant calcification (fusing the valves together). I had no symptoms up until my doc told me I needed the surgery. Ironically from that moment on I felt like I was in a bad way. Truth was that I was in a bad way. My surgeon said the valves was significantly less functional than the echo showed.

The ross is pretty good from what I understand. I've got an artificial since I had to have an aorta repair too. It's good and works well but it's hard to get used to the clicking and the warfarin is a pain.

You'll feel like a new after the surgery.

good luck!
David