Not your Typical BAV...

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K

knoxbone09

Active member
Joined
Aug 22, 2009
Messages
36
Location
Galesburg, IL
All,
Thank you for the warm responses for a newbie! I have a question, (and I'm not sure if this has been addressed specifically on the forum, I did a quick search and didn't uncover anything) in my introductory post AL had mentioned that some of you may have congenital conditions that aren't your typical BAV, i.e. in my case, a fusion between leaflets; therefore, I thought that I would start a thread where I could specifically ask if anyone is/was in a similar situation.
I have a thickened right coronary cusp--seen on my first echo--and a fusion of two of my leaflets, which was decided on after a TEE. Two cardiologists have struggled to determine whether I have a BAV or three dysfunctional valves, but come down on the side of three that are dysfunctional and leading to the moderate AI. My cardio told me she believed that this was congenital, so I was wondering if anyone has presented with a similar condition? It would be helpful to hear how your doctors diagnosed you as there is some confusion to my diagnosis.

Thanks,
Grant
 
Hi Grant,

What I've been told is that it looks like I have a bicuspid aortic valve, but one cardio did mention that he would not be able to tell if two leaflets were fused together or if there were only two. I do have only one leaflet working, the other is so stenotic it does not move. I personally think they will not know for sure until they go in for surgery to remove the valve and then will have a definite answer. But it has been recommended to me that if it is truly bicuspid, I should have my children checked.

I'm afraid that probably doesn't help much. Many here are very knowledgeable and maybe they can shed some light.

Lori
 
I believe yours is the more typical scenario where mine with 2 perfectly formed was the rarity.
 
I have/had a BAV and so do 2 of my 3 sons...according to their scans it appears one has the 2 leaflet version and the other has the fused version which is likely a 3 leaflet valve that did not separate at the appropriate time during formation...I suppose this is why its called a Connective-tissue-disorder.

I believe I also had the 2 leaflet version, although my memory is somewhat faulty...I likely posted the info on here somewhere 3 years ago. If they both originate from the same faulty tissue it makes sense to me that both types are as "heritable" as each other although I don't know for sure and it maybe that the true 2 leaflet versions are rarer because we are "special".

I do recall that if you have several kids and 1 has a BAV the chances of a 2nd or 3rd BAV being present in your other children is increased to something like 75% or more.
 
Grant,

Are you originally from galesburg? I am originally from the springfield area. anyway I was diagnosed with BAV back in march. A surgeon that i saw recently said that he was not sure of the nature of my valve. he said that he would be able to tell from a echo, so i am scheduled to have another one done soon. I had a cath done 2 weeks ago and he said that he could not tell from that. Another surgeon that i spoke with said that the only way of really knowing is by having a TEE done or until they open you up. I don't know if this answered your question. I will be having surgery in the near future and will know for sure following that and maybe i will of more help after that point.

welcome to vr.
 
Until recently, I thought my brother had a BAV. He actually had two working leaflets and one that was shriveled and had been since birth. His wasn't diagnosed until they opened him up, but that was in 1993 so the tests weren't as extensive then.
 
scuba_898 said:
Grant,

Are you originally from galesburg? I am originally from the springfield area. anyway I was diagnosed with BAV back in march. A surgeon that i saw recently said that he was not sure of the nature of my valve. he said that he would be able to tell from a echo, so i am scheduled to have another one done soon. I had a cath done 2 weeks ago and he said that he could not tell from that. Another surgeon that i spoke with said that the only way of really knowing is by having a TEE done or until they open you up. I don't know if this answered your question. I will be having surgery in the near future and will know for sure following that and maybe i will of more help after that point.

welcome to vr.
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Scuba,
I'm originally from Chicago, but am staying on at Knox as a Post-Baccalaureate student before graduate school. Downstate was bit of a shock to me coming from the city. I enjoy it though, but I must say that there is little to do here when the campus is empty and I really should be heading down to Peoria for some fun!
I'm not sure what to think about my valve. The cardio here in Galesburg told me he was confused by whether it was a BAV at first--thought it was and then that it wasn't upon further examination. I had a TEE done back in Chicago and the cardio there thought it prudent to present my case before the entire cardiology department at their weekly, bi-weekly conference, to get a definitive answer. They apparently spent some time on it and she told me that it appears that two of the leaflets are fused together and that I should have my family checked.
I hope you get a definitive answer as well, for me, I worry about the cause of it because I haven't gotten a definitive answer yet ( I understand that in all likelihood I won't till they're inside) but it's strangely disconcerting not knowing. I had what was diagnosed as Pnuemonia this past winter and I had heart pain so bad that I was prescribed Xanax to go to sleep. The doctor told me there was no evidence of scarring that would be typical of any infection, but I still wonder, however irrationally about it. I was also on Prozac for a long time, along with Adderall, so I can busy myself worrying about other things too :) There is a history of MVP in the family, my mom and Grandma both have it--but no BAV or sudden death that might present if cases hadn't been diagnosed.
It really doesn't matter though, I guess. It is what it is and the path is the same. I know your surgery will go well, Scuba, and I'm happy to be here, it seems like this is the place to be for support and community.
Lisa in Katy, it seems to me that congenital valve problems can manifest themselves in all sorts of ways. It sure is good that we can do things about them today, I remember one of the members had a valversary recently who had been at the very beginning of surgical interventions for Valve disease. It's scary to think about this diagnosis before 1960, luckily we don't have to.
 
knoxbone09;416370]Scuba,

It really doesn't matter though, I guess. It is what it is and the path is the same.
Click to expand...
But is that true that it doesn't matter - other than the obvious concern that it could be hereditary and thus impact other family members too.

Is there any evidence to suggest that a bi-cuspid valve leaves the patient open to other connective tissue disorders. Aneurysms, etc. It just seemed like that was a pattern when I've read posts and read memebers' brief histories as part of their signature line. Anyone out there know if someone with BAV is more prone to other types of heart/artery issues?

I had started a similar thread wondering how many out there knew they had Aortic Stenosis, but didn't know if due to BAV. I don't know how to insert the link to the thread or I would... :)

Rhena
 
TXWildflower said:
But is that true that it doesn't matter - other than the obvious concern that it could be hereditary and thus impact other family members too.

Is there any evidence to suggest that a bi-cuspid valve leaves the patient open to other connective tissue disorders. Aneurysms, etc. It just seemed like that was a pattern when I've read posts and read memebers' brief histories as part of their signature line. Anyone out there know if someone with BAV is more prone to other types of heart/artery issues?

I had started a similar thread wondering how many out there knew they had Aortic Stenosis, but didn't know if due to BAV. I don't know how to insert the link to the thread or I would... :)

Rhena
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That's a good point, I noticed the same correlation. My cardio explained to me that I was "lucky" not to have aortic stenosis. I forgot the exact phrase she used, but it seemed that aortic stenosis and BAV were interrelated more often than not; at least that's the impression I got. I was initially very interested in finding out statistics on my condition, but I have gotten to the point where I figure I will just have to wait and see if I develop one of these conditions and watch very closely in the meantime.
 
Well, if you have a bi-cuspid aortic valve, then you likely will have aortic stenosis (if not already have a mild case). Not to insult your intelligence if you already knew this, but really the term stenosis, just means a 'narrowing' .... in this case of the aortic valve which over time (often long long time) gets more narrow (i.e. more stenotic if there is such a word), as your BAV calcifies . Welcome to the club - sounds to me like though you are free and clear likely for many years yet.
 
TXWildflower said:
But is that true that it doesn't matter - other than the obvious concern that it could be hereditary and thus impact other family members too.

Is there any evidence to suggest that a bi-cuspid valve leaves the patient open to other connective tissue disorders. Aneurysms, etc. It just seemed like that was a pattern when I've read posts and read memebers' brief histories as part of their signature line. Anyone out there know if someone with BAV is more prone to other types of heart/artery issues?

I had started a similar thread wondering how many out there knew they had Aortic Stenosis, but didn't know if due to BAV. I don't know how to insert the link to the thread or I would... :)

Rhena
Click to expand...

The Bicuspid foundation has alot of good info about BAVD http://bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html#Anchor19
 
yeah, I had a weird one too! It was technically 3 leaflets, but 2 of the 3 divisions were fused, so technically it was like having only 1 of the 3 leaflets opening. The surgeon told me that at one time I probably had 2 of the 3 leaflets opening, and that the 2nd one probably fused in the last couple of years leading to the "severe" ratings. Unfortunately until my surgery I was always assumed to be just a standard BAV, and to be honest it doesn't make that much of a difference, if it's not working and starting to fail, then it's time to discuss options, and most likely that means replacement, so whatever is there is moot...
 
Alex B said:
yeah, I had a weird one too! It was technically 3 leaflets, but 2 of the 3 divisions were fused, so technically it was like having only 1 of the 3 leaflets opening. The surgeon told me that at one time I probably had 2 of the 3 leaflets opening, and that the 2nd one probably fused in the last couple of years leading to the "severe" ratings. Unfortunately until my surgery I was always assumed to be just a standard BAV, and to be honest it doesn't make that much of a difference, if it's not working and starting to fail, then it's time to discuss options, and most likely that means replacement, so whatever is there is moot...
Click to expand...

Edit: Wanted to ask you how you were doing, noticed you had your surgery, but saw your thread and posted there...
 
I'll ask my cardio about heredity

I'll ask my cardio about heredity

I'm scheduled to see my cardiologist for my one year exam in a couple weeks and to go over my one year echo, which I had last week. This thread causes me to consider my situation: My mother had a bicuspid aortic valve that resulted in severe stenosis (and ultimately AVR) at age 48. My BAV was never stenotic, just regurgitant, and I had it replaced at age 52. I'm assumming I inherited this defect from my mom. Interestingly, my nephew was diagnosed with Wolf Parkinson White in early adolesence, and tragically, died of a sudden heart attack at age 14. I wonder if his heart defect was due to receiving the same gene.
 
JeffM said:
I'm scheduled to see my cardiologist for my one year exam in a couple weeks and to go over my one year echo, which I had last week. This thread causes me to consider my situation: My mother had a bicuspid aortic valve that resulted in severe stenosis (and ultimately AVR) at age 48. My BAV was never stenotic, just regurgitant, and I had it replaced at age 52. I'm assumming I inherited this defect from my mom. Interestingly, my nephew was diagnosed with Wolf Parkinson White in early adolesence, and tragically, died of a sudden heart attack at age 14. I wonder if his heart defect was due to receiving the same gene.
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My Mom has murmur and has never been diagnosed with any disease I know of but when I told her the BAV was genetic she said " So your blaming me ":cool:
 
To add to this, my BAV was MIS diagnosed in 1982 as a MVP by the VA hospital, and thus enabled me to serve 9 yrs in the Marines.
 
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