Don't know if AVS is due to Bi-Cuspid or not

[TXWildflower]

Just wondering if anyone else with Aortic Stenosis doesn't really know the cause? I'm 55, so shouldn't be due to old age. My Mom said I didn't have rheumatic fever. I never took Phen Phen. It was my gynocologist that first noticed a murmur 10 years ago and sent me to a cardiolgist. Cardio told me from day one after first echo that some day it would have to be replaced.

My cardio told me early on that he thought it was congenital and that was that. Just recently for the first time he mentioned the possibility that it could be bi-cuspid, but couldn't tell from echo. Then after heart cath he said the results were still not conclusive as to bi-cuspid and they might not know until they actually get inside to see (I think that is what he said.... he said it right after cath so I"m a bit fuzzy still on that conversation - will ask again when I see him this week.)

After reading more and more on this site, it seems to me to be very important information to know if you have a bi-cuspid aortic valve due to the propensity for other connective tissue disorders if you do.

Has anyone out there found out that they had a bi-cuspid aortic valve at the time of surgery but didn't know it beforehand? Maybe this isn't all that unusual?

Thanks,

Rhena

 

[Danny]

I dont know much about it, but im sure someone here will come along with some good answers... good luck.

 

[Bina]

Rhena, you are my twin.
Before my OHS my diagnosis was AS. Even post op nobody said anything about BAV.
Two years after my OHS and after learning alot here, I decided to ask for my surgery summary.
Guess what? Calcified BAV.
My cardio is one of those who won't tell his patients anything. Like we are all stupid.

 

[TXWildflower]

Rhena, you are my twin.
Before my OHS my diagnosis was AS. Even post op nobody said anything about BAV.
Two years after my OHS and after learning alot here, I decided to ask for my surgery summary.
Guess what? Calcified BAV.
My cardio is one of those who won't tell his patients anything. Like we are all stupid.

Twins? Actually I think I'm shorter and rounder... Thanks for that info though. I am going to educate myself as I've been trying to do and ask him a lot of questions and he is going to find out that I am not stupid! I don't want to be short shrifted or do I want things sugar coated. I want to know what is going on and what to expect.

It is funny (not really) that when things turned serious, I took my sister who is an RN with me to an appt for the first time. Up till then I was always alone. Sometimes while I asked the question, he responded more to her. I do think he is a highly qualified cardio in Austin and I like him and my gut says to stick with him, but he just doesn't have great people skills and I think feels more comfortable talking with someone with a medical background. He and I will talk and set some ground rules... I'll be nice of course , but maybe he just needs to know what I expect from him (and vice versa). After all I am the customer .

 

[netmiff]

My history (briefly) : 1985 , found out I had a very slight murmur.

Fast Forward to about 12 year ago, I had a bout with bronchitis (or so I thought at the time, could it have been endocarditis? who knows), ended up in emergency. Had bloodwork, EKG, chest X-ray before I could leave and an appointment within 36 hours for an echo, and overheard emerg doc telling my family doc by phone to get me to a cardio ASAP. Diagnosis was aortic stenosis, annual followup and someday surgery

Fast Forward again to 2.5 years ago - surgery now! 6 months later, surgeon found BAV, no-one had had any idea, it was too calcified to see in ether echo or cath.

And we could be twins, I am of the short round variety too

 

[epstns]

Rhena,
From what my cardio tells me, there are only a few known causes of aortic stenosis. The most common, I think, is old age -- but neither of us are yet into our 80's, so that doesn't apply. There is the possibility of rheumatic fever or radiation damage from cancer therapy, but the patient usually knows if that is the case. The only remaining factor that I know of is the bicuspid valve that many of us "probably" have. My cardio and their echo tech both believe that mine is probably bicuspid, but the echo just is not clear enough to prove it -- so we will have to wait until I have it replaced to know for sure.

I'd guess that from a pure differential diagnosis approach, yours is another "probable" bicuspid aortic valve, until proven otherwise.

Welcomt to The Waiting Room!

 

[va66]

Good morning:

We also could be twins as far as our stories go. My regular doctor heard my murmur in 1996 at which time I had my first echo. I was told at that time that one of my leaflets was "stiff" and that I should be followed by regular cardiologist's visits.
It was not until 2007 that my calcified valve reached the "severe" stage. This was determined after several more echos in the time frame of 2004-07. When I had my heart catherization in September of 2007, the cardiologist could not tell me for certain whether or not the valve was bicuspid.
It was only after my surgery at Washington Hospital Cener on Feb. 11, 2008 that my surgeon told me that I did indeed have a heavily calcified bicuspid valve! I was so glad to have such a wonderful hospital for my surgery with such a competent surgical staff and excellent aftercare.
Being in the "waiting room" can invoke a great deal of anxiety. It's soo liberating to have the surgery done and behind you. I'll be checking this site to see when you do have your surgery. You'll find a lot of support here. Take care!



Bicuspid aortic valve, replaced at age 65 with bovine pericardial 21mm on 2/11/08 by Dr. Paul Corso at Washington Hospital Center.

 

[rckrzy1]

My PCP and Cardio told me I had a BAV right from the start, no doubt about it. But mine being a "true bicuspid" might have been why. Where my leaflets where 50/50 in size, unlike most where 2 leaflets fused during development and you get a 60/40 or 66/33 size valve.

 

[Roger Frank]

I had an AVR last year at 55 due to a bicuspid defect. I've often questioned if this is a relativity new phenomenon caused be some environmental factor like drugs, smoking or some other yet undiscovered genetic trigger.

 

[dick0236]

Interesting discussion. Prior to my surgery in 1967, the cardios diagnosed my condition as "aortic stenosis", probably the result of undiagnosed rheumatic fever (I did have severe case of scarlet fever that caused me to have to repeat the first grade). Cardios felt I probably had rheumatic fever rather than scarlet fever (the timing would have been in the early 1940s and healthcare by physicians was not widely used).

At the time of surgery and according to the "OPERATING ROOM REPORT", the surgeon wrote "....31 year old gentlemen who has Aortic Stenosis with mild calcification. He has been nearly asymptomatic."

In 1997, 30 years after the surgery, I saw a cardio for a followup visit and he wrote "...he may have had rheumatic fever as a child or, more likely, had a Bicuspid Aortic Valve". This cardio either did not read the earlier diagnosis or did not believe the Surgeons diagnosis.

I really don't follow this stuff very closely, but I am in the process of changing Cardiologists and I have spent some time reviewing these old records....sooooo, the long and short is that I had either Aortic Stenosis or a Bicuspid Aortic Valve......either way, I got it fixed.

 

[ShezaGirlie]

'Double Trouble'

'Double Trouble'

Hi Rhena and welcome ~~

Ok all you other 'twins' move on over.. The cardio told me that age 55 is the most common for severe aortic stenosis from bi-cuspid aortic valves. Course, that was after I landed in the ER unable to breathe....at age 55 and had the aortic valve replaced a few days later ~~ in 1999.

Rhena, you're in a great city with a wonderful new heart hospital. We've had others who have had their surgeries done there..! Also, did you know that the new On-X valve is made right there in Austin http://www.onxlti.com/ if you decide on a mechanical valve otherwise there are many tissue valves available and you'd certainly be a candidate for one of them.

I'm just down the road from you in New Braunfels...buena suerte (goodluck) to ya..!

~~Janie

 

[TXWildflower]

Hi Rhena and welcome ~~

Ok all you other 'twins' move on over.. The cardio told me that age 55 is the most common for severe aortic stenosis from bi-cuspid aortic valves. Course, that was after I landed in the ER unable to breathe....at age 55 and had the aortic valve replaced a few days later ~~ in 1999.

Rhena, you're in a great city with a wonderful new heart hospital. We've had others who have had their surgeries done there..! Also, did you know that the new On-X valve is made right there in Austin http://www.onxlti.com/ if you decide on a mechanical valve otherwise there are many tissue valves available and you'd certainly be a candidate for one of them.

I'm just down the road from you in New Braunfels...buena suerte (goodluck) to ya..!

~~Janie

Hi Janie! Has it been hot enough for you this summer? Any water left in the Guadalupe river?

I didn't know they made the On-X valve here but agree that the Heart Hospital of Austin is supposedly one of the best around (Didn't make the Newsweek list though unless I overlooked it.)

Your comment about 55 being the common age for reaching the severe stage is interesting too - my age exactly (for another month or so anyway). This has been a very interesting discussion all the way around as someone else pointed out. I'm glad to know I'm not alone in not knowing whether I have BAV or not. In fact - not only am I not alone I am surrounded by twins - or maybe quintuplets or something. It sure sounds to me like BAV is the most likely culprit for my stenosis though after having read all this.

Thanks to all for contributing their stories and keep em coming if you got em. I'm very interested.

The waiting room is the pits for sure. I'm one of those people who likes to plan ahead. I almost always have one vacation scheduled as soon as I get back from another I can't plan a darm thing now...... In fact I have a trip to St. Lucia scheduled for 9-10, but the jury is still out on whether that is a good idea so I'm pretty blue about having to cancel. Seems silly to risk it. OK OK - is that violins I hear in the background?? I'll stop whining since I can't have any cheese with it (dieting don't ya know).

Glad to have found y'all!

Rhena

 

[TXWildflower]

I had an AVR last year at 55 due to a bicuspid defect. I've often questioned if this is a relativity new phenomenon caused be some environmental factor like drugs, smoking or some other yet undiscovered genetic trigger.

Do you mean environmental factors that our mothers (or fathers) may have been exposed to? Maybe a stupid question, but just wanted to clarify that you weren't saying it developed after birth.

 

[davidswife]

Hi Rhena!

Thanks for starting this discussion (which I just found). Very interesting stories. David was diagnosed with aortic stenosis at birth, 52.5 years ago. He was always just told that he had congenital aortic stenosis and no mention was ever made of a biscuspid valve. We didn't even know what that was until I found this site the night of his catheterization just two weeks ago! And my brother-in-law is a cardiologist but I never knew to ask. When I did ask now (before David's surgery) he said that they were not sure. I was not happy that all these years his cardiologists had never mentioned BAV and the possibility of other connective tissue disorders since David's aortic stenosis was obviously congenital. And as it turned out, he did have an aortic aneurysm but no one had ever checked for that before the surgeon. When I asked the surgeon (before the surgery) whether it was a bicuspid valve he said that he would not know until he went in and, even then, it might be so calcified that he might not be able to even tell. Well, it was very calcified (I think he said that it did not even open and close at all!) but he was able to tell that it was bicuspid. As a funny side note, one of my questions when we met with the surgeon before the surgery was whether we could have the valve (I thought I read on here that someone had his old valve). David though I was crazy. His surgeon is very serious and never cracks a smile (I guess serious is good for a heart surgeon) and he just said that it was probably so calcified that it would just break apart into pieces when he removed it and that they had to send it to pathology anyway. Too bad, I was going to display it in a little lucite cube along side David's autographed baseball collection!

Anyway, David had two caths as a child (maybe at 5 and 9 or 9 and 12, he doesn't remember for sure) and then he was just followed yearly by a cardiologist, although there was a time between when he was in college and when we met (about 7 or 8 years) that he did not see a cardiologist at all. When we met and I found out about his aortic stenosis I got him back to a cardiologist and made sure he went yearly. His cath two weeks ago was the first one that he had since he was a child. His surgeon was fascinated by the fact that he had two caths at such a young age and that nothing was done after them but then he realized that 45 years ago there were no other tests to use. He was curious about the results but David never had the records, and when I called Columbia Presbyterian about his records they said that they only kept them for 10 years!

So David has technically been in the waiting room all his life. He knew from when he was very young that his valve would eventually have to be replaced but being young and asymptomatic made it easy for him not to think about it all the time. As he got older I think he thought about it when he went to see the cardiologist each year but that was probably it. I guess the last month since he became symptomatic, and went to the cardiologist for the second time this year (he was there for his regular check up in March and everything was fine), has been the real waiting room because now we knew something would have to be done sooner rather than later. He was told that he might be able to wait a year but after the cath we knew it had to been done right away (and luckily too since they also found the aneurysm). It must be very hard to be in the waiting room knowing it will be soon but not knowing when.

Nadine