Conflicting Stories = Anxiety & Panic for a new "possible" BAV-er

[Roxx_yer_Soxx]

So....
I was having a few good days, pretty much forgetting about the "possible BAV" and my 3.4 size aortic root which depending on what i read could be called anything from normal to "call the surgeon."

If one does a google search, the first 3 reputable medical websites that you click on states:

Article 1- "patients with a bicuspid valve may develop a narrowing or leakage of the aortic valve. Narrowing or leakage of aortic valves do not necessarily develop in childhood, but may occur in adulthood. On rare occasions these problems require repair, either with a balloon (cardiac catheterization) or surgery."

Note: on "rare" occasions

Article 2- "In many cases, the condition will cause no problems. In fact, it's estimated that 50-60% of bicuspid valves are found incidentially during autopsies for another reason. However, especially in later life, a bicuspid aortic valve may become calcified, which may lead to varying degrees of severity of aortic stenosis which will manifest as murmurs. If the leaflets do not close correctly this can cause aortic regurgitation. If these become severe enough, they may require heart surgery."

Note: the first sentence.... this article leads one to believe this is something you want to keep in eye on if you know it... but if you don't... no big deal....

Article 3----- Also known as the anxiety inducer----
"Although bicuspid aortic valve disease is present at birth, it usually is not diagnosed until adulthood because the defective valve can function for years without causing symptoms. Rarely, the disease is so severe at birth that the baby develops congestive heart failure early in life. More commonly, patients will have a history of having a childhood murmur and symptoms develop in mid-life as the valve ages.

Calcium deposits on and around the leaflets eventually cause the valve to stiffen and narrow, a condition known as stenosis. As stenosis develops, the heart must pump increasingly harder to force the blood through the valve. By age 30, nearly all BAV patients symptoms include chest pain, shortness of breath and dizziness or fainting caused by inadequate blood flow to the brain.

If the bicuspid valve does not close completely, blood can flow backwards into the heart. This is regurgitation, also called aortic valve insufficiency. The heart then must pump that same blood out again, causing strain on the heart’s lower left chamber, the left ventricle. Over time, the ventricle will dilate, or over-expand. The main symptom of aortic valve regurgitation is shortness of breath during exertion, like walking up stairs. At least 80 percent of people with BAV will require surgical treatment to repair or replace the valve and part of the aorta, usually this happens before age 40."

What the hell??

Article 1 and 2 treat this like a hangnail and a booger..... Article 3 makes it sounds like you need to pick a surgeon.

This is what gets me soooo fired up about this B.S..... it's absolutely impossible to get a straight answer from anyone in the medical field.

If I got something this defective in my body.... lets fix the damn thing and get it over with. If this is nothing more than an "incidental" finding that people find out about at their autopsies.... then why am i messing with a yearly Echo??

 

[river-wear]

Article 3 sounds like crap, honestly.

By age 30, nearly all BAV patients symptoms include chest pain, shortness of breath and dizziness or fainting caused by inadequate blood flow to the brain.

Bull-cookies - just look at the folks on here. You could turn that around though, because you don't have symptoms at age 31 then you must not have a BAV.

Same for this (most of the people here are over 40):

At least 80 percent of people with BAV will require surgical treatment to repair or replace the valve and part of the aorta, usually this happens before age 40.

The reason you don't want to do something now (other than your heart is perfectly fine) is because surgery would make your worse off than you are today to some extent. Either you'd be on warfarin or you'd need another OHS every 10-15 years. Not something to sign up for without clear need.

It's like a co-worker of mine who just had a brain tumor removed. It was the size of a golf ball but benign. They wouldn't have taken it out if it wasn't causing her symptoms, because the surgery itself has risks. My company owner's wife has the same type of tumor - they aren't touching it because it isn't hurting anything.

With all due respect, why do you seem to WANT to have surgery?

Michele

 

[Philip B]

Fired-up...why?

Fired-up...why?

I've not a clue about the three reputable websites you got your information from, but getting fired-up because you see different information on the web seems like something of an over reaction. Different perspectives are not limited to medical issues.

Could it be that you go in for your annual echo because you want to insure that your defective valve gets replaced before it causes permanent heart damage at some point in the future? If you're like me, your defective valve may not present major, life limiting issues until you're older. Oops, one of those first two reputable websites mentioned something like that.

Of course, making a responsible decision about monitoring your defective valve may prevent a medical examiner from discovering your defective valve and asking, Now, why didn't this guy get this problem taken care of before it landed him on my table?"

Odds are pretty good that there's some truth in all three of the websites you found.

Good luck with your frustration!

-Philip

 

[Roxx_yer_Soxx]

Yeah gang....

guess I am just not a "wait and watch" kind of person.

Too much research is getting me in mental trouble... especially when no two stories jive up..... or in some cases aren't even close.

Maybe this is why they call them "practicing physicians?"

They are simply practicing because they aren't sure either.

My frustration is: One source will tell me that "only 30% of Bav's will require any intervention in an adult life."

Source two states: "around 80% will require surgery by age 40."

Ok... those two statistics aren't even close, and I think would leave anyone new to this left with some questions and anxiety.

 

[skeptic49]

Well, the thing is...this is not the kind of thing that you can have fixed pre-emptively...they just won't do it until it's time. I went to see a surgeon and he chased me out of his office, and I'm a lot closer to needing it done than you will be for many years. The facts are that they want you to hold on to what you have as long as you can. Also, OHS and VR are life-saving techniques to be sure, but there are those pesky complications that so many people experience. You will have to get used to living with your situation. The sooner you calm down and make a sensible health monitoring plan for the future, the better off you and everyone else around you will be.

Jim

 

[Lily]

So....
I was having a few good days, pretty much forgetting about the "possible BAV" and my 3.4 size aortic root which depending on what i read could be called anything from normal to "call the surgeon."

If one does a google search, the first 3 reputable medical websites that you click on states:

Article 1- "patients with a bicuspid valve may develop a narrowing or leakage of the aortic valve. Narrowing or leakage of aortic valves do not necessarily develop in childhood, but may occur in adulthood. On rare occasions these problems require repair, either with a balloon (cardiac catheterization) or surgery."

Note: on "rare" occasions

Article 2- "In many cases, the condition will cause no problems. In fact, it's estimated that 50-60% of bicuspid valves are found incidentially during autopsies for another reason. However, especially in later life, a bicuspid aortic valve may become calcified, which may lead to varying degrees of severity of aortic stenosis which will manifest as murmurs. If the leaflets do not close correctly this can cause aortic regurgitation. If these become severe enough, they may require heart surgery."

Note: the first sentence.... this article leads one to believe this is something you want to keep in eye on if you know it... but if you don't... no big deal....

Article 3----- Also known as the anxiety inducer----
"Although bicuspid aortic valve disease is present at birth, it usually is not diagnosed until adulthood because the defective valve can function for years without causing symptoms. Rarely, the disease is so severe at birth that the baby develops congestive heart failure early in life. More commonly, patients will have a history of having a childhood murmur and symptoms develop in mid-life as the valve ages.

Calcium deposits on and around the leaflets eventually cause the valve to stiffen and narrow, a condition known as stenosis. As stenosis develops, the heart must pump increasingly harder to force the blood through the valve. By age 30, nearly all BAV patients symptoms include chest pain, shortness of breath and dizziness or fainting caused by inadequate blood flow to the brain.

If the bicuspid valve does not close completely, blood can flow backwards into the heart. This is regurgitation, also called aortic valve insufficiency. The heart then must pump that same blood out again, causing strain on the heart’s lower left chamber, the left ventricle. Over time, the ventricle will dilate, or over-expand. The main symptom of aortic valve regurgitation is shortness of breath during exertion, like walking up stairs. At least 80 percent of people with BAV will require surgical treatment to repair or replace the valve and part of the aorta, usually this happens before age 40."

What the hell??

Article 1 and 2 treat this like a hangnail and a booger..... Article 3 makes it sounds like you need to pick a surgeon.

This is what gets me soooo fired up about this B.S..... it's absolutely impossible to get a straight answer from anyone in the medical field.

If I got something this defective in my body.... lets fix the damn thing and get it over with. If this is nothing more than an "incidental" finding that people find out about at their autopsies.... then why am i messing with a yearly Echo??

The thing is, the possibility of the necessity of a future open heart surgery (OHS) for valve replacement, is not as simple as, "You either have a bicuspid or you don't."

There evidently are degrees of how bad the bicuspid disorder may be. (Apparently, not everyone with a bicuspid needs surgery.)

Sometimes a person is born with only two cusps, or sometimes a person is born with three cusps but two have grown or become attached together to some variation [at some unknown time, possibly by birth, I believe I've read].

Or a person could be, as I understand, misdiagnosed with a bicuspid because their cusps grow together later in life, possibly due to calcification. But their valve certainly may need replaced in that situation also.

Sometimes a person is born with other bicuspid issues, such as a coarctation; and/or they may have Marfan's or some other genetic issues, or connective tissue issues.

Sometimes a person may also develop rheumatic fever or some other infection, even a heart infection (like endocarditis), which can attack the already malfunctioning valve, etc.

Apparently, many people who never need surgery may only have a mild bicuspid malformation or situation which gives them little or no problem their entire life.

There are just so many other variables and such that can contribute to such varying outcomes.

Upon bicuspid diagnosis, however, it is considered wise to be monitored by echo to watch for digression.

Hope this is helpful .

 

[netmiff]

From what I know from what I have read and heard (mostly from my cardio and surgeon):

Bicuspid valves : you are born with them; you can live with them and die from something else at a good old age. However, if it is going to go "bad" on you, 45+ is a good time for it to go. Mine got calcified, and the valve opening narrowed. I have NO problems with coronary arteries, this is something completely different.

My murmur was frirst detected in 1985 at age 30; it was "very slight"; I had bronchitis that landed me in emergency around age 45; doc there said he heard my murmur as soon as he walked in the door! Was referred to a cardio, annual echos until age 52, when surgery was called for.

The best thing you can do is settle down, troop off for the annual echos (they aren't that bad!) and make up your mind to wait and watch. Your day may never come, but it is best to get it repaired before heart damage occurs.

 

[dick0236]

that[/I] bad!) and make up your mind to wait and watch. Your day may never come, but it is best to get it repaired before heart damage occurs.

Very good advice. Work with your cardiologist and if you can't accept his/her advice, find one that you can work with and there is an old saying..."believe only half of what you read".

I'm glad all this "information overload" wasn't available when I had my surgery. I certainly can appreciate how some can get "frozen" due to the vast amount of information AND misinformation being thrown about.

 

[ALCapshaw2]

I don't remember the details of your earlier posts and echocardiogram reports, BUT,

THE Reason to have Annual Echo's is to Monitor the condition of your Valves. IF and WHEN they reach known levels of Stenosis (0.8 sq cm effective Aortic Valve Area) or Regurgitation (I'm not sure of the 'trigger level' for surgery), your Cardio or Surgeon will THEN advise you 'It's time'. Note that some (mostly Old School) Cardiologists like to wait for Symptoms to become severe while Surgeons prefer to operate BEFORE there is Permanent Damage (and/or Severe Symptoms).

FWIW, there are patients that fit into Each Category described by the references you found so there is NO single prognosis for BAV. The EchoCardiogram (and TEE and Catheterization) Tests give Cardiologists / Surgeons the Numbers they need to know to make their recommendations.

My recommendation is to obtain Copies of ALL of your test results (including Labs / bloodwork). I put ALL of the Echo Data on a Spreadsheet so that I can track the results and spot variations before they hit the 'trigger points'.

'AL C'

EDIT -

After re-reading your first thread, my guess is that it will be a Long Time before your Valves *might* require attention. My *guess* is that your Cardiologist wants to check to see if there is any progression in the size of your Aortic Root.

There is just NO WAY anyone can predict IF it will enlarge or how fast, hence the recommendation for followup EchoCardiograms. IF there is NO Growth in the next year or two, your cardio may want to extend your checkup schedule to 2 year intervals. As others indicated in your other thread, this could go on for Decades with little or no change.

In the mean time, TRY to put your (anxious) mind to rest. From the information you have provided, NO Surgeon would recommend Surgery at this stage. IF there is any significant change, it will be detected in your next echocardiolgram. IF you have symptoms of Shortness of Breath, especially with exertion, inform your Cardiologist and will likely want you to come in for another evaluation.

NOW, go ENJOY the Holidays with your Family and think about more pleasant things. You are NOT going to Keel Over anytime soon, at least not from a 'possible' BAV.

'AL C'

 

[Ross]

[ link ]

 

[tobagotwo]

Article three shows complete ignorance. Somebody slept through their heart lectures. Many people with BAV are never affected by it, and never even find out they have it. Of those that do find out, the percentage who require replacement is more than half. Of them, there is a percentage that have other connective tissue problems.

There are a number of informative articles in refernce Sources and in searching past posts on the topic (I would try "connective" and "bicuspid").

Best wishes,

 

[Mentu]

Rox, don't panic. As the others have said, this is not a simple issue and you cannot begin to evaluate this problem without test results. In my case, my Cardio told me he was sure my valve was tricuspid but stenotic and might be a problem one day. Ten years later, he referred me to a surgeon but only when the combination of symptoms and test results indicated that waiting was no longer wise. After more tests, my Surgeon told me my valve was almost certainly bicuspid. As it turned out, my valve was tricuspid but over time two of the leaflets had fused together. From the outside, it just isn't simple to tell the difference. Perhaps the first thing you might consider is collecting the results of the tests that have been run which should give you a pretty good idea of your heart function. With that baseline, you can better monitor what is happening over time. When tests results indicate your heart is in good condition & functioning properly and you have no symptoms, you do not have a "ticking time bomb" in your chest. What you do have is the good fortune to know that you have a "potential" problem that needs to be watched. I would encourage you to use the resources here at VR to begin learning what your tests results mean and to become familiar with the symptoms that might be expected as a heart valve deteriorates and of course ask questions of us. You are not alone in this; it has already happened to us and the whole purpose of VR is sharing knowledge and experience.

Larry

 

[Roxx_yer_Soxx]

I appreciate all the advice everyone.

You must understand: It's just very scary to think that 6 months ago, I never even knew what a BAV was..... I didn't even know what a Aortic Valve was????

And as far as my Holter & Echo..... I volunteered for both. No doctor ever ordered either. I did.

But check this out: I have posted a question on two different websites in the last 48 hours where only those who are heart specialists, or at minimum.....heart specialists assistants can answer.

My question was this, word for word: "I have a possible BAV, although on my Echo it was not clear. No Stenosis or Insufficiency was detected. I do an intense workout 4 days a week. The other day, in the middle of my workout, I tool my BP/pulse. My heartrate was at 134, and my BP was 111/68.... that's ok right. I am 31 yr old male. 5"11, 182lbs?"

Got two answers back:
One said: "That's excellent BP for your age, and being in mid-workout. That would signal to me that at this point anyway, no matter what shape your Aortic Valve may be, it is working as it should. Best wishes."

Answer 2:"That low BP concerens me for being in the middle of a workout, I would maybe mention that next time at your doctor."

Both of these answers came from M.D.'s....at least supposedly.

Answer 2 seems ridiculous to me..... that's like asking my doc what can I do to get some high blood pressure going.

I like informative forums such as this one that is made up 90% by those who have been there, but stepping outside this forum and into a doctors lounge.... you might as well try to argue religion, or creationism vs. evolution.... as you can't get a uniform or straight answer from anyone.

 

[dick0236]

You must understand: It's just very scary to think that 6 months ago, I never even knew what a BAV was..... I didn't even know what a Aortic Valve was????...........



...........Both of these answers came from M.D.'s....at least supposedly.

.

I do understand its very scary and I didn't know what a BAV was until a couple years ago, when I started reading this forum.........and for 41 years I thought I had rheumatic fever damage and now the docs are telling me that I "probably" had a BAV. Doesn't really matter what caused the problem so long as it got fixed.

The second quote above doesn't surprise me. I do not rely on the printed word unless I KNOW and TRUST the source....and even then, ??????????.

 

[Philip B]

Uniformity????

Uniformity????

Good luck with your search for uniform answers to your questions...especially with posting questions with the online MD crowd. This is just an opinion (mine), but you'd probably be better off finding a cardiologist whom you can visit with face to face and whom you trust.

Ever notice the wide variety of perspectives and opinions that show up on this forum? Most of us aren't medical professionals, but we're more than happy to share our perspectives based upon our personal experience. Why would anyone expect anyhing different from MD's who participate in a virtual, online community?

-Philip

 

[Lily]

Soxx, I think I can empathize with your anxiety. Like you said, it's all new to you. And you realize you need to educate yourself on the diagnosis. And now you're finding information that, at first glance, may not seem to coordinate with other information you have found.

Medical things, especially those that are structural, might seem like there should be a "one size fits all" solution. But maybe medicine is more of an art than a science. And doctors "practice" medicine. And then there are the possible variations of bicuspid disorder. And the decline of any deteriorating heart valve can be fairly unpredictible. That may be why it's so important to keep an eye on things with regular echos or other tests.

Anyway, a lot of us have found it necessary to keep track of our own medical situation, including keeping a file with copies of our records, test results and that kind of thing; and some of us have opted to consult with more experienced cardios, even surgeons, who may be more familiar with our specific condition.

Hoping this is helpful. Best wishes to you .

 

[Maryka]

You do not have to have a bad heart valve to have an enlarged aorta. Some genetic disorders just cause aneurysms. Keep having your tests.

 

[tobagotwo]

It takes many years to develop issues where there aren't any, if they develop at all. You've got a "maybe" BAV and no indication of any effects from it whatsoever. Get an echo every five years and forget about it.

Do your workouts and enjoy your low blood pressure.

Best wishes,

 

[Maryka]

When I was considered to have Marfan Syndrome, I met several people who had OK valves but had an enlarged aorta/aneurysm who almost died of a dissection. I am no doctor, but I would have an echo every year or so and would NOT "forget" about it in activities that increase heart rate or intra-thoracic pressure (as in lifting). Prophylactic beta blockers can slow aneurysm growth.

 

[river-wear]

Maryka, you're going freak him out. He doesn't have an aneurysm. My aortic root is the same size and my doctor gave it a clean bill of health.