Is surgery always a given?

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valdab

valdab

Well-known member
Joined
Sep 12, 2010
Messages
86
Location
UK
Hi there,

Is surgery a certainty when one has BAV?

My cardiologist says many people go through life unaware they have the condition and indeed die with it rather than of it.
However, I also read on various forums that surgery is pretty much a given sooner or later. It makes me wonder if my cardiologist is merely trying to allay my fears.

My BAV was found by accident and my aorta is 4.5cm but I have no other issues as yet. I'm 53 and just curious if I'm 'definitely' in the waiting room. Or maybe it's impossible to say?

A great community btw - so informative and reassuring to read of others in a similar position.

This is something I have been pondering for a while and I decided to post after seeing a photoessay on valve replacement surgery recently. Sort of wish I hadn't stumbled upon it, truth be told....
 
Many people go through out their lives not needing surgery with a BAV. I don't know the exact statistics but many people have BAV and don't even know it! The nurse that runs my cardiac rehab has a BAV and she is in her 50's and is doing fine health wise that I can tell. Be at peace that you know you have a BAV and that you can now monitor it and not have too much concern about just "dropping dead" and not knowing why. Depending on where the aneurism is on the aorta 4.5 is something to be watchful about. Mine was dilated at 4.2 and when they did my AVR they grafted it because they didn't want to have to go in 5 to 10 years later to repair it. I'm glad they did; surgery isn't something you want to do twice if it can be avoided.

I don't know how "bad" your BAV is and if your aorta dilates more and has to be surgically repaired I don't know if they would replace a BAV that is working well when they do the graft on the aorta. I'm obviously not a doctor so these are things you would want to ask yours.

Even though it seems impossible not to think about "it" try not to put yourself in the "waiting room". It's just a "fun" phrase we use here, now that you know what's going on with your body just be sure to follow doctors orders and monitor the thing. If the doctor thinks you may need something done in the next 3 to 50 years its good to know your options and be prepared with valve and surgery choices so if the time ever comes you will know better. BY NO MEANS OBSESS ABOUT IT, IT WILL NOT HELP A DARN THING.
 
Hi, It is enirely possible to have BAV and never need surgery. About 2% of the people are born with BAV and many never are even diagnosed until they die from something completely different.
My guess would be since you are in your 50s and your valve still looks and is functioning well that would probably be a good sign you could live decades longer and not need intervention. I know you mentioned the 4.5 Aorta before, has it increased at all since they found it a couple years ago? if not i would think that would might have been at that size for a while and is relatively stable so another good thing. Heres your older thread that had alot of good info http://www.valvereplacement.org/forums/showthread.php?37926-Another-newbie
 
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I'll echo both points above. Your BAV may be just fine, but important to keep a watchful eye on the 4.5 aorta. There are somewhat common trends with BAV, but no definitive prediction for any given patient. Some BAVs need surgery both for the valve and the aorta, often fairly early in life. Some BAVs need either one or the other operated on, but not both, oftentimes later in life. But some BAVs never need surgery for anything. Just think, if 2% of the population actually needed surgery, there sure would be a lot more heart valve surgeries!

So, I'd say just consider yourself in the "waiting room" on the days you actually are - when you have checkups with the cardiologist. Go right ahead and enjoy the rest of the year!
 
I would caution against being overly optimistic about avoiding surgery given the combination of the BAV and the AA. I had both conditions, was diagnosed by accident when I was 35 and had my surgery on 9/9/11; after 9 years in the waiting room. The general rule on the AA is to operate at 5.5cm if there is no other conditions. When a BAV is present the threshold is less. In addition to watching the aortic growth, you have to guard against enlargement and damage to your heart. In my case I went from below the threshold (4.9) to 6cm in less than 6 months, when it starts to go it goes. Take this time to get a few surgical opinions and make your valve decisions. At two weeks post surgery, I feel great and wish they would have done it years ago. I went mechanical due to my age, the coumadin is no big deal, but I am not overly happy with my St Jude Valve, it is too loud. Good Luck.
 
When I was in my twenties I was diagnosed with a harmless MVP....about 10 years later my doc heard another swish
sound and I was diagnosed with mild aortic stenosis....another 10 years later things got bad and I was in countdown
mode at age 46 with severe symptoms and a surprise BAV that was very fibrocalcified.
Going for regular echoes is very important.
 
Listen to your cardio. Now that the problem has been identified and characterized, your doctor will check periodically to look for change. The fact that you have these problem can be disturbing but consider that most people who have them do no yet know. You are one of the lucky people to have a doctor who follows through and you are no different now than you were before you knew that you were a little different. If you trust your cardio, you can rely on him or her to follow your condition and respond if things begin to change. It is possible that your condition will never degrade and you will continue living a normal life. You should be comforted by knowing that if your valve or aorta change both can be repaired and you can resume living your life.

It would be a good idea to read more about these two problems and become familiar with the symptoms that can indicate things are changing. Should you begin to notice you are short of breath or dizzy or notice radiating chest pain, you need to report your symptoms to your cardio at once. Many of us have experienced symptoms and wrote them off to something else. Don't do that. Work with your cardio and your family doctor to monitor your health. The best thing you can do for yourself is to stay as healthy as you can. Should your valve degrade or the aneurysm enlarge, you will be in an excellent position for a good recovery if you are healthy.

You have found a community now and we will be here to offer support when you need it and to answer questions when they arise. Take care.

Larry
 
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A few more thoughts on the aorta:

4.5 cm could actually mean different things. Location matters. I assume you are probably referring to either the root or ascending aorta, and of those locations, the root is usually 1 cm larger in a normal state. Dilation can occur elsewhere too, though, such as abdominal. Also, depending on location, size can be different for women than it is men.

Several factors influence the surgical threshold. Genetic disorders such as BAV do factor in, as was mentioned above. Stability or recent growth is another factor. Symptoms, age, and/or other medical issues are a consideration also. Now, growth is a medical mystery. Some patients have rapid growth (such as jmorganky above), some patients have slow growth, some patients have intermittent growth which can literally stop for quite some time. Unfortunately, there is no way for doctors to predict this. Which makes it even more important to monitor.

Your cardiologist should already be evaluating all of these things. With limited information, we of course can only offer general guidance. As Larry said, though, whatever support you need, in whatever form, there should be plenty of help here.
 
Firstly, thank you so much to everyone who has taken the time to leave such informative replies.

It hadn't occurred to me that 2% of people having valve replacements would be an awful lot of operations - it puts things into perspective. Of course, by definition, the people writing on these forums are people with issues regarding their condition. I'm one of life's obsessives so this will help me to get things into perspective. Thank you!

My aorta is 4.5 at the root and has been checked once since being diagnosed a couple of years ago. It was the same size. I am due for my yearly checkup sometime before Xmas.

jmorganky - thanks for sharing your story; I'm very pleased to hear all is well. Interesting to read how quickly the size of your aorta increased - it underlines the need for regular check-ups. Was there also an issue with your valve or do they always replace that while they're fixing the aneurysm?

Bina - oddly enough I too was diagnosed with possible MVP when I was in my early 20's; it was subsequently downgraded to being of little importance at a later checkup.

I am aware of the symptoms to look out for. Unfortunately I have hypothyroidism which slightly complicates things - until I hit the menopause (another barrel of laughs) a couple of years ago, my TSH was well controlled and apart from 6-monthly blood tests, I completely forgot about it. Now, however, I am having difficulty getting my numbers right and the symptoms associated with poor control include - you've guessed it - breathing difficulties and discomfort in the chest. I'm now on a T3 supplement which can also stress the heart so that, too, needs careful monitoring. Fortunately, my blood pressure is low (90/65 this morning) which I believe is a plus. I am also pretty fit as I swim and walk every day.

Another issue I need to get investigated is a pounding heart after I eat a meal containing a lot of carbs. It's been going on for about 6 months but I feel it might be a digestive issue (these things run in my family). I have yet to read of a connection between this and BAV so if anyone knows better I would be interested to hear.

Thanks again folks, for the invaluable support and information provided.
 
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Glad to hear your measurement is holding steady, and low blood pressure is definitely a plus. Normally, the guidelines for management of aortic patients here in the US recommend beta blockers for blood pressure control, with a target heart rate of around 60. I had normal blood pressure with a resting heart rate of 80 or so before starting on a beta blocker, and I was maintained similar to the guidelines.

I can offer my perspective on your valve replacement question. It depends on the condition of your valve most importantly. However, there is a bit of a "while we're in there" philosophy that can come into play too. It actually works both ways. Some valve replacement patients have their aorta grafted earlier than normally would be done. Also, some aorta patients have their valve replaced early too. Generally speaking, the definition of "early" would align more with moderate failure, not severe. My valve was replaced at moderate to severe stenotic. It could have waited a few years, maybe, but it just didn't make sense to ignore it, and guarantee another surgery in only a few years.

On the other hand, I remember one or two folks on our site who had only an aorta graft - their aortic valves in good condition were left alone. Surgeons balance these sort of issues all the time. And again, it all comes down to the individual patient in the end.
 
I think the course of BAV +/- AA is essentially unpredictable. Mine was discovered totally by accident at age 60 and was moderately advanced by then. My cardiologist suggested I may never need surgery and that she had many "stable" patients, so, I was hopeful I might get away without surgery. I had no symptoms of note, but over the next year my periodic echo results showed very rapid progression of stenosis and elevation in pressure gradients. Even though I remained symptom free, my valve was a mess and almost exactly one year after the original diagnosis I got it fixed on strong recommendation of a top surgeon I consulted. C'est la vie.
 
Hi Valdlab,

if you are 53 and your aorta is 4.5 cm already then im afraid to say it looks like you are already in the waiting room. My surgeon in Britain tells me at 5 cm its an automatic replacement- and often at 4.5 cm depending on the aorta itself. Im 51 and also had congenital BAV and I just went to have it replaced at gradient of 60 max and aorta at 4cm. I just figured better safe than sorry. BAV, according to some literature can also effects the elasticity of the surrounding aorta. Yours is stretched already (i belive they are normally 3-3.5 cm) somethings doing that. So you may be ok for another 20 years, but it unlikely, the one thing for sure is youre playing Russian roulette with yourself over next years if you don't replace. A ruptured aorta gives you a few seconds to live.

sorry to be a bummer. thats just my view.
 
Puketguy said:
Hi Valdlab,

if you are 53 and your aorta is 4.5 cm already then im afraid to say it looks like you are already in the waiting room. My surgeon in Britain tells me at 5 cm its an automatic replacement- and often at 4.5 cm depending on the aorta itself. Im 51 and also had congenital BAV and I just went to have it replaced at gradient of 60 max and aorta at 4cm. I just figured better safe than sorry. BAV, according to some literature can also effects the elasticity of the surrounding aorta. Yours is stretched already (i belive they are normally 3-3.5 cm) somethings doing that. So you may be ok for another 20 years, but it unlikely, the one thing for sure is youre playing Russian roulette with yourself over next years if you don't replace. A ruptured aorta gives you a few seconds to live.

sorry to be a bummer. thats just my view.
Click to expand...

Since her 4.5 is in the ROOT where it normally buldges out and is larger than other parts of the Aorta, the numbers for surgery are different. Normal for ascending or descending are about 2.3-3 so 5 is about double that. Normals for the Root are about 3.5-3.9 so 4.5 is not that much larger. So there is a VERY good chance they may never need surgery, as her doctor said..
 
Lyn - thank you for providing some balance. Just took the time to read about Justin - truly, I don't know what I have to moan about; his story kicks my fears into perspective. What a handsome lad he is- he is fortunate to have such a caring mom.
 
This is a good thread for those seeking information about BAV. BAD (Bicuspid Aortic Disease) is a complicated genetic condition. While it is true that some individualas with BAV may never need surgery, the condition does pose serious risks that people need to be aware of. One of the best sources of information about the condition can be found on the Bicuspid Aortic Foundation web site:

http://bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html

Best wishes,

Jim
 
Thank you Jim - I am familiar with the website you mention. It's a little alarming in places, but I guess it's best to be aware.

One question remains - my condition was originally diagnosed by a Clinical Cardiologist who heads a cardiac imaging and research centre in London. At my last appointment (nearly a year ago) he told me to come back in 12 months for another echo, then, if things remain unchanged, he would only need to see me every 5 years.

I have already decided I'm not happy with that arrangement and will tell him when I go for my check-up in a couple of weeks. Should I really be scouting around for a consultant who is also a a cardiothoracic surgeon to advise and monitor me or is the Professor I see at the moment OK until things change?
 
Yes, I wouldn't be happy with a 5 year arrangement either. It's pretty standard here in the US for any BAV patient to have a yearly echo. I actually had one every year since birth, and didn't have any significant indications of failure until age 35. When aorta dilation is also present, an echo every 6 months is sometimes recommended as well, depending on size and related factors. You may be perfectly stable through multiple echoes, but monitoring is the only way to know for sure, since there are BAV and aorta patients who never have symptoms.

A preliminary surgical evaluation actually does make sense to me, even if you may not be at the surgical threshold until some time later, or ever for that matter. There are definitely issues to consider that a cardiologist, any cardiologist, would not necessarily be as adept at evaluating. Sometimes numbers get thrown around a little too easily...i.e. 4.5 cm or 5.0 cm, and conclusions reached based on that alone. At the end of the day, surgery depends on a variety of patient factors, and surgeons generally only recommend surgery when the risk of intervention in a given patient is lower than the risk of their condition left untreated or unrepaired.
 
valdab said:
Lyn - thank you for providing some balance. Just took the time to read about Justin - truly, I don't know what I have to moan about; his story kicks my fears into perspective. What a handsome lad he is- he is fortunate to have such a caring mom.
Click to expand...

Thank you. I am very proud of him and how he handles everything. FWIW he's had surgery on a few different parts of his heart, and both right and left sides of his heart. but the las few have been pulmonary. BUT his Aortic Root is 4.3 and has been stable for th past few years at least (since he was close to full grwn so things were getting bigger because his whole body was) Anyway, his enlarged root hardly even gets mentioned during his appts, just something to keep any eye on. If that helps at all.

As for how often to have echos, is not uncommon either before or after surgery, if things remain stable for a few years, to move echos from yearly to every 2 years, unless things change, symptons appear heart sounds different etc. But I wouldn't be comfortable going 5 years in between.

If you should go to a surgeon at least once, to get their opinion, it probably wouldn't hurt, but i'm not sure if there are any criteria that have to be met before you can get refered to a surgeon in the UK.
But usually cardiologists are the ones that monitor you for years and order all the tests etc. and surgeons only see you preop and shortly after surgery (a couple eeks/month if they do see you after surgery) Probably mainly because of time, since they spend most of their days on the OR and usually at least 1 day a week is full with pre-op consults and post op check up..then all the other things like weekly conferences /round tables with all the heart staff at that hospital discussing patients, teaching .....
 
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Valdab,

Three in my family have BAV. My mother, brother and myself. My father, other brother and sister do not. This is 50% of us! How's that for beating the 2% odds? But I suppose there is a strong genetic component.

That said, my mother, at 67, has never had a problem other than mild leakage. My younger brother and I, however, both have moderate to severe leakage and AAs in the 40-50 mm range (He's 33, I'm 41). I guess the BAD skipped over the older generation.
 
Thanks for posting chaconne. Good luck with your surgery whenever it may be.
Looks like your family was pretty unlucky. I've been urging both my brothers to get themselves checked but with one thing and another they haven't gotten around to doing it.
 
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