BAV & Percentage requiring surgery

[wvf3]

New to the forum. Very informative. I was diagnosed a few years back with having a BAV. I have had 4 echos and 2 chest CT scans. Neither of the cardiologists suggested I needed surgery nor seemed very concerned. Basically I was told to come back every year and take the antibiotics before going to the dentist. That was it.

Therefore I am curious then if anyone knows what percentage of diagnosed BAV actually end up in surgery? I also wonder how many folk go through life never even knowing they have the defect.

Thanks for any insight.

 

[PJmomrunner]

The following link is probably the best source of info about BAV's on the web.
http://bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html

This link can be found on the above website too, but I think it deserves special mention as a fine overview.
http://circ.ahajournals.org/cgi/content/full/106/8/900

Welcome aboard!

 

[wvf3]

Thank you for the informative links. One question: Does this quote seem contradictory?

"Given that serious complications will develop in 33% of patients with BAV, the bicuspid valve may be responsible for more deaths and morbidity than the combined effects of all the other congenital heart defects. Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority will require some intervention, most often surgery."

It says that 33% of patients with BAV will develop serious complications but then goes on to say that the "vast majority" will require some intervention. Thirty three percent doesn't sound like a vast majority to me or am I reading this wrong?

Thanks!

 

[Mary]

Thank you for the informative links. One question: Does this quote seem contradictory?

"Given that serious complications will develop in 33% of patients with BAV, the bicuspid valve may be responsible for more deaths and morbidity than the combined effects of all the other congenital heart defects. Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority will require some intervention, most often surgery."

It says that 33% of patients with BAV will develop serious complications but then goes on to say that the "vast majority" will require some intervention. Thirty three percent doesn't sound like a vast majority to me or am I reading this wrong?

Thanks!

I think the "vast majority" is a comparison to those who "may go undetected or without clinical consequences for a lifetime."

BAVD can cause more issues than just valve replacement; I believe that the 33% may refer to those.

 

[PJmomrunner]

I understand the confusion, but ike Mary says, the the first statement is saying that 33% (and the cited reference actually says at least 33% and itself refers to studies that claim much higher incidences) will have serious complications (aneurysm, dissection, coarctation, endocarditis...) --in addition to having the bicuspid valve. The second statement says the vast majority of all BAV's will need some type of intervention (and I think it means (says?) mostly surgical (replacement, repair, valvuloplasty...))

 

[tobagotwo]

Here's a link to a couple of earlier postings about this, similar in nature to what you've read (one by PJMomrunner)...

http://www.valvereplacement.com/forums/showthread.php?p=129768&highlight=bicuspid+links#post129768

My two cents: as far as the statement being self-contradictory, I entirely agree.

The interpretation I have seen is that about 1/3 of BAV patients will need their valve replaced ("require intervention"). Of those in that 33%, 40% or so may develop further complications.

What I have read is that the "vast majority" (about 2/3) of people with bicuspid valves lead normal lives with no intervention. This is at least partially based on the notion that many are simply never detected. Many people never have an echo at all, and many "good" BAVs are not easily detected by current echo technology.

That seems to follow with the general experiential flavor of the BAV crowd here on the site, which is considerable, and may indeed seem a somewhat higher percentage than appears to be the case in this population. Many of our BAVs had their valves replaced long ago, with no further issues apparent.

When dealing with a .9% figure, vs. the 2% estimate, you are isolating those that have been detected, which predisposes the study population to display a higher percentage of added complications. There's a reason why many of them were detected (usually guided by murmurs).

This does not in any way diminish the significance of BAV. If you have it, you should consider having annual MRAs (Magnetic Resonance Angiograms: no radiation) or other imaging that can show much more of the aorta and in much better detail than echoes can, looking for enlargements.

If nothing seems to be brewing with the valve itself, echo testing could reasonably be done biennially, as it mainly illuminates the valve. The actual valves don't deteriorate that fast at the beginning, if they do so at all, so there should be ample time to catch any regurgitation or stenosis at an early stage.

These are, of course, just my opinions.

Best wishes,

 

[Magic8Ball]

Just to add a little extra, Make sure you get CT scans on your chest every year.

I've known of mine all my life and been checked every two years however only with ecg/echo/chest xray in the uk with the national health.

On getting to Australia for my first checkup they sent me for a CT scan which showed an aortic anurism which now needs surgery. They said had they had the CT's done over the years they could see the 'growth' and perhaps not operate so soon but without the historical CT's they don't know if its grown gradually or quickly.

My BAV itself is ok and would not in itself require surgery yet although i'd always assumed at some point but when they are in they may as well do both.

Regards.

 

[MrP]

I don't recall my surgeon or cardiologist mentioning anything about a BAV database or providing my information pre and post surgery to any medical study for purposes of tracking BAV complications. Do you really think "someone out there" may be tracking complications in BAV patients such as valve replacements, dissection, or aneurysm? Not! These statistics both inside and outside this forum are nothing more than a swag or guess. If I am wrong, please send me the name of the organization tracking BAV complications.....puleeze prove it!

 

[PJmomrunner]

Well...okay...the two statements do seem to be very contradictory, but I don't think the author intends them to be! After reading them way too many times and going back to the reference from which the first statement is drawn ( http://heart.bmjjournals.com/cgi/content/full/83/1/81 ), the first statement, " Given that serious complications will develop in 33% of patients with BAV, the bicuspid valve may be responsible for more deaths and morbidity than the combined effects of all the other congenital heart defects", still says 33% of BAV's will have serious complications. The study this statement references defines those complications as: stenosis, regurgitation, infective endocarditis, and aortic dissection. It also states, "Because of case selection, some of the figures quoted will have overestimated the incidence of complications but they are the only relevant published data. They indicate that, at a conservative estimate, one third and possibly the majority of patients with bicuspid aortic valve will develop serious complications."

The second statement, "Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority will require some intervention, most often surgery.", is sketchier. I think the author's true meaning would be better served with the insertion of two words and a pluralized acronym--"of known BAV's". So it would read, "Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority of known BAV's will require some intervention, most often surgery." I think this is the intent because he qualifies the statement first by saying BAV's may go undetected. He does leave a lot open to interpretation.

To Mr. P's point, I don't think anyone actually "knows what percentage of diagnosed BAV actually end up in surgery". But is anyone keeping track? Hmmm...BC/BS, Prudential, Aetna, Hartford, etc.... And certainly complications are individually, if not collectively, being studied, even if they are not being tallied by an omniscient "someone".

As Bob and Magic have said, monitoring things is the key to appropriate treatment should complications arise. Discussions like this keep us all inquisitive, if not 100% accurately informed, and that's got to be good too.

 

[wvf3]

Thanks for the great replies. One other question comes to mind. I am curious to know from those folks who have had surgery for BAV, what kinds of symptoms did you have prior to the surgery? I guess what I am asking is are there any tell tale signs that may indicate the BAV is beginning to fail? I would certainly be interested to hear your experiences.

 

[Mary]

Thanks for the great replies. One other question comes to mind. I am curious to know from those folks who have had surgery for BAV, what kinds of symptoms did you have prior to the surgery? I guess what I am asking is are there any tell tale signs that may indicate the BAV is beginning to fail? I would certainly be interested to hear your experiences.

I've never really thought of BAV's as failing. They can become stenotic, but aortic valves that have been damaged from rheumatic fever, radiation, and advancing age can, and do, also.

From your first post I see that you are asymptomatic, and apparently there is no murmur being heard at the present time? If that's the case, the advent of a murmur might be the first signal. That's how it was in my case. If you're getting regular check-ups, you will probably find the tell tale signs appear about the same time as changes are noted on your echo data.

 

[tobagotwo]

BAVs that do have problems become initially regurgitant (insufficient; leaky) probably more often than stenotic (narrowed opening). However, as they progress, it's not unusual for both problems to inhabit the same valve. This is usually due to cardiolytic apatite (calcification) that forms on and around the valve, in a chemical response that may be useful to the body in other circumstances by coating damaged tissue. Unfortunately, on a heart valve, a nonflexible coating and a buildup of hard material that blocks bloodflow and valve opening is a slow death sentence.


PJM, I've not been trying to invalidate the intent of the statement referred to earlier regarding percentages. I just felt that the second statement was so awkwardly rendered and miscontexted by the original writer as to render it more misdirecting than useful. If referenced more appropriately, the figures are not contradictory in themselves, but actually bolster one another.

To place it in a more appropriate context: if one accepts the figure of approximately 2% BAVs in the general population and the figure of 33% requiring intervention, then if you take the .9% that are discussed (those with detected - and thus "active" BAV), then 67+% of that group (a vast majority) could be likely to develop complications, usually requiring surgery at some point.

Note that for practical purposes, it may be appropriate to consider that if your BAV has been independently detected already, you would reasonably be included in that .9% group, rather than the larger, 2% group.

People who were echoed for it as children due to having a BAV parent might not really fall into that group, as there is no knowing whether they would have been detected otherwise, which appears to be the main selection criterion for that .9% group.

To put it in yet another perspective, if the 2% is accepted, then .7% of the world's population has a BAV condition that will require intervention (surgery) during their lifetimes. This would appear to be a potentially lucrative business marketing and sales niche, as the alternative to treatment is personal demise.

I don't think the numbers are dismissable as guesswork, as the numbers generated from actual patients are experiential. The article was a summary of a large number of "major studies" done over the years (which are referenced), and appropriate mentions are made regarding differences in criteria and diagnostic techniques in the various studies used. While I have not read through all of those studies, I'm not moved to say "humbug" at this point, as many and various sources seem to come to similar conclusions, and there's no commercial axe to grind, no money to be had for the conclusion going one way or the other.

Best wishes,

 

[PJmomrunner]

I just felt that the second statement was so awkwardly rendered and miscontexted by the original writer as to render it more misdirecting than useful. If referenced more appropriately, the figures are not contradictory in themselves, but actually bolster one another.

I couldn't agree more. As usual, I appreciate your thoughtful consideration and lucid analysis.

 

[Arlyss]

The review article by C. Ward mentions 4 autopsy studies, published in 1886, 1970, 1972, and 1997, as the source for much of the available information. http://heart.bmjjournals.com/cgi/content/full/83/1/81

There is a need for much more data and understanding regarding BAV disease, and I hope in time it will emerge.

It is best to understand what is known today about BAV, and determine whether or not it is happening to you as an individual - there is no need to guess. Even within the same family, BAV affects people differently - so while comparisons or statistics may be interesting, there is no substitute for knowing what is happening in your own body.

Best wishes,
Arlyss

 

[temp69]

no comment on the 33% figure and ensuing controversy.
my card at ucla said ALL valves become somewhat stenotic with age in nearly everyone eventually.
with bicuspid valves it happens about 10 years sooner.
so...just watch it, and with the technology, you;ll know soon enough if you'll need surgery. hopefully not!

 

[MrP]

WVF3, BAV symptoms with regurgitation (insufficiency) include palpatations and earlier fatigue with extreme exertion (as a result of less oxygenated blood flow in this state). If one has an aneurysm also, symptoms may include chest pain (sometimes more frequent sharp chest pain as the aneursym really gets larger and the aortic wall stretches or dissects), "fullness" in chest area above heart, sometimes intermittent cough from the ascending aorta pressing against the larynx nerves (at least in my case). Hope this helps you or others.

 

[wvf3]

Thanks again for all your informative replies. I have an appointment for an echo (and possibley CT scan) at the end of the month. It's hard to tell because I don't have any obvious symptoms. I have had serious gastritis in the past (confirmed by endoscopy) so whenever I have chest pain it's hard to tell. My problem is I tend to be anxiety prone so I imagine that doesn't help. I wonder sometimes if it would not be worthwhile to get the valve replaced sooner rather than later even though it's not yet necessary. I guess it's a gamble but I would hate to be closer to 60 and have to deal with such an operation (I'm 47 now). Well, I will see what my cardiologist says. Thanks again.

 

[wvf3]

One other question that comes to mind: After one has this surgery, does the valve perform so well that one has a new rush of energy and physical strength due to the stronger flow of blood? That result would certainly make the surgery attractive for someone who is having fatigue. Thanks.

 

[MrP]

Hi again. My advice is DON'T have this surgery until really necessary and as recommended by your cardiologist (and second opinion). After all, this is big-time surgery!!!! With regards to CT scan, find out what your ascending aorta dimensions were on your last two and then compare with upcoming measurement. What is important is whether or not the diameter of your ascending aorta is increasing in size and how large it is now. The hinge point for bad things to happen is 5.5cm but varies based upon your body size and profile. So the recommendation is surgery when it reaches 5.0cm for BAV patients and before reaching this "hinge point". With regards to having more energy after valve replacement, this depends upon what is causing your fatigue today. If this is a result of regurgitation or calcification of your BAV, then yes....after recovery period and with regular exercise. The best time to begin getting in good physical shape is NOW...this will benefit you now, in surgery when it becomes necessary, and post surgery.
All my best...MrP

 

[Susan BAV]

One problem is that a cardiologist may tend to continue treating a patient's symptoms with meds to avoid surgery whereas a surgeon has the experience to know the better timing to operate before the heart is in an excessively weakened state.

Also, not everyone seems to have symptoms that they, or perhaps their healthcare provider, are recognizing. I had a lot of symptoms that my cardiologist dismissed as "nothing" (his actual description, he said because I was able to walk into the cardiology office unassisted) and a few months later when I decided a second opinion was appropriate and had seen three surgeons for their opinions and had another angiogram, I was told I "needed surgery in weeks, not months." The cardio, just months before, told me that I was fine and might never need surgery. I don't know why he said that. He is in a crummy but wealthy group of cardiologists who specialize in pharmaceutical studies so I have wondered if he just wanted me to look elsewhere for better help. I was extremely ill and was absolutely amazed how much better I felt after I received the new valve.

It might help if you read the VR.COM Stories section. I am of the opinion that perhaps men tend to have a more dramatic onset of valve failure and women may be more aware of subtle and gradual declines with their own health.

I have to download some nonsense if I want to spellcheck this; so instead, I'll send it as it is...