Originally posted about newborn daughter, but I may have BAV too???

[UNCGIRL44]

Recently I've had an issue with skipped heartbeats. I really didn't think much about it because I have noticed them all my life. My pediatrician noticed a murmur when I was younger but basically labled it benign. When I was about 19 the PVC's really picked up. I saw a cardio at that point who performed an echo and diagnosed it as MVP. No biggie. I was told no need to follow up, but if I had any symptom development over the years I should make an appointment to check it out.

Back to the present day. My OBGYN and Cardio are part of the same medical establishment (this only matters because they share the same systems...and see all test results...). I love my OBGYN, who kindly advised that he knew nothing about heart issues and he thought it was prudent to see a cardio, if for no other reason for peace of mind. He set up the referral. Short story - I see the cardio, he hears nothing strange, orders an echo. My next appointment was with my OBGYN, I mention the cardio appointment and he nonchalantly says "yes well it looks like everything is normal, normal Echo, oh but it does show you have a bicuspid aortic valve"....then he goes on about the appointment. I noted with him to please verify because my daughter has this and I wasn't sure if he was looking at something else.

I go about a week later for a follow up with the Cardio. Seriously I don't even think he was going to mention it until i asked! He noted he didn't see any issues with the mitral valve...and that everything looked normal. I said okay, so why did my OBGYN tell me I had BAV? He said the echo was no clear on that, and that they were not able to tell if it was bicuspid or not. I really need a copy of the report I guess. I am not sure if they are required to mark a choice? And if so, it's labled as possible if you can't tell? But even that seems odd to me. ANYWAY he wants to do a TEE (I think that's right) to get a better look at the valve and make a determination. Okay that's fine, although the whole thing is just weird to me.

I just want an answer and I feel really frustrated with the resutls, or lack thereof. Has anyone had this experience with their test results?? What should I ask for or do at this point??

Any thoughts are appreciated.

 

[Ryan CA]

A CT scan will show much more detail than a standard ECHO. The TEE will show more detail as well. I would ask for both. As far as symptoms, when I was 33, I am 39 now and 7 weeks post AVR, I was riding a mountain bike 50-60 miles per week with no difficulty, so I wouldn't say that lack of symptoms is an indication that you do not have any defect. That seems short sighted on the doctor's part which would lead me to suggest a second request...that being a second opinion.

Good luck and hopefully you have a perfectly functioning tri-cuspid valve.

Ryan

 

[Paleowoman]

My bicuspid aortic valve murmur was first head when I was 25. It was investigated but they could not decide that it was BAV or something else and nothing was done. Fast forward 10 years to when I was pregnant with my son when I was 35. I was referred again to a cardiologist who was extremely sure I had BAV, but the echocardiogram wasn't conclusive - that was 25 years ago when echos weren't so good. The result was that I just carried on the pregnancy as normal and that was that. 18 years later a doc suggested I have my valve investigated again. Echos far more advanced and the BAV showed clearly. I had the valve replaced seven years later (last January). I was completely asymptomatic always, even when I was about to have surgery and the stenosis was critical.

So I'm not sure your doc makes sense saying that at 33 there would be symptoms of BAV. Yes there will be a murmur at some point but who knows when - I mean I never had a murmur at 20 when I know my chest was listened to, but at 25 the murmur was really clear. But there would not necessirily be symptoms. Some people get symptoms earlier and some later, seems an individual thing. And some people, like myself, never have symptoms apart from a murmur !

Oh, just a thought, many people live their whole lives without ever knowing they have BAV - it is symptomless and murmurless and never attracts any attention, doesn't cause any problems, docs never hear it (it becomes an incidental finding post mortem) It's not everyone with BAV that gets a problem and needs it replaced.

 

[UNCGIRL44]

Thanks guys! I actually requested a copy of my echo and received it today. Every category is normal. Here are some measurements: Ao root 2.7 La dim 3.20 La/Ao 1.19 IV .98 LTD .81 LOL 4.47 LIDS 3.34 Don't know what that means other than aortic root! No regurgitation in any valves. All are normal but aortic valve is noted "sclerotic and probably bicuspid" and the valve opens well.

 

[UNCGIRL44]

Have no clue what this means but like I said I will be having the TEE (hope I got that right!) in November. Hope I'll know more then.

 

[river-wear]

It sounds like you don't have anything to worry about as far as heart function - that's great! A TEE is a trans-esophageal echocardiogram. It can sound a little scary, but they give you nice drugs to not be aware of what's going on - it doesn't hurt and it only lasts about 15 minutes.

 

[UNCGIRL44]

So I think my root size us normal...2.7? Does the root enlarge and dissect In Some people? Or id it another part that dissects?? Does it only enlarge if the valve is bad? I am also concerned about the noted sclerosis. It doesn't say anything about the degree....but is that like atherosclerosis? And why would I have that at 33? Does anyone else have that? I am anxious to find out about my aorta and measurements. That is something I'm worried about. I wanted more children but if there are other issues I assume that may be out of the question.

 

[UNCGIRL44]

Okay. Maybe I have been thinking about this too much. I know there really isn't anything you can tell me but I am anxiously awaiting my next appointment.

I made an appointment with a new cardiologist for next week. I just can't get comfortable with my current referral given that he wasn't even going to tell me about the possible BAV among other things.

Anyway I was thinking the root was normal so I was probably okay....until I saw that often the aneurysm is in the ascending aorta which I don't think they even looked at in me. Now I am hyper aware of every little pain thinking I'm about to fall over dead! I am almost 100% certain I have an aneurysm and it is freaking me out. Ugh. I wish I would not have kept reading about this. I have a newborn....so I have to lug around a heavy car seat....and a toddler who weighs 30 lbs. Gosh it makes me nervous with all the stories about not lifting more than 25 lbs etc!!

Hopefully I will be more comfortable with the next cardiologist. I don't want to seem like a crazy doctor hopper. I'm not sure what to tell him about why I am changing doctors.

I think I jinxed myself on the anxiety issue. I thought I was good and now I've freaked myself out!!! No need really for a response. I just have to get this out. My husband thinks I'm crazy about all this.

 

[tom in MO]

If it helps, get it out.

From what you've said, I would not worry. The first cardio did not mention a "possible" BAV, because it was not a viable diagnosis. He did not tell you, since it is not a diagnosed illness. The category "possible" BAV is the one that everyone is born with. Only those of us who progress into a diseased condition get our BAV noticed and diagnosed.

Plus, echos are not clear pictures, remember the ones you got when you were pregnant? They are even more complex and harder to read for the heart given all the other stuff in your chest (as opposed to your womb).

 

[07sti]

I'm not a cardiologist, but based on the numbers from your echo, it looks like everything is normal. You're well within the "normal range." As a point of reference, I have BAV with an aortic root measurement of 3.8cm and ascending aorta of 3.3cm. My echo notes that I have a borderline enlarged aortic root, which makes sense based on a normal range of 2.0cm - 3.7cm. There's no way of knowing, but my aortic root likely won't grow to a size requiring surgery for another 5-10 years.

In addition, the fact that your echo doesn't note any regurgitation (I'm moderate) or stenosis, it doesn't look like you have anything to worry about. It would be good to confirm whether you have BAV, but other than that, you likely won't require any follow-up for quite some time.

One other thing to keep in mind here...Unless you're having the cardinal symptoms, there is little risk of things going really bad, really fast. All the research points to regurgitation/stenosis and/or aortic root/ascending aorta enlargement being slow-progressing. It seems to be that once things do get bad, then there's potential to get worse more quickly. At that point they'll start scheduling follow-ups more frequently. So if you have trace regurgitation, you're likely not going to be severe within a year. And your aortic root or ascending aorta aren't going to measure 2.5cm and go to 5cm (potential for surgery) in a year.

 

[UNCGIRL44]

Thanks for the replies. I guess I just figure odds are pretty good I have BAV. My daughter has it, and I have sclerosis of that valve ( I'm only 33)...plus it says probable BAV on the report. I can't imagine it's not BAV.

I agree the root measurement is fine, but i don't think theu checked the ascending unless that is the same measurement as the root but from what I have read it's different. Anyway time will tell. I'll be hanging around anyway since my daughter has BAV. Thanks again. Everyone here is so kind. The responses are always thoughtful.

 

[AZ Don]

Something like 20% of people with a bicuspid valve develop an aortic aneurysm in the root or ascending aorta (I had both). That is a much higher rate than the general population, but as mentioned earlier they tend to develop very slowly. It sounds like your root is fine. I would ask your Dr. what the measurement is of your ascending aorta. If they suspected Bicuspid valve it should have been measured. For aneurysm the CT scan is most accurate but a good technician can do a pretty good measurement by echo. For BAV, I think the echo or perhaps the TEE is more definitive. It is important to be comfortable with your Dr. so I think switching is a good idea. Also a good idea to always ask for a copy of your test results. Three Dr's failed to notice my test results mentioned I had a dilated aorta. Good thing I asked for a copy, I actually read the thing. My root and ascending aorta were 5cm, and have since been replaced.

 

[UNCGIRL44]

Thank you AZDon. I will definitely ask about the ascending aorta. I don't think they measured it with the first echo because they were not looking for BAV. I imagine they will take a look with the TEE. I will make sure I ask.

I am thankful for the suggestion from this site to get copies of tests. I can't believe how many times people are not told the full results or they are missed.

 

[UNCGIRL44]

Saw the new cardiologist today. He felt that there was no need for another echo until next year. His opinion was that given the "probable" bicuspid valve notation and sclerosis, we should just assume it's bicuspid.

With that being said he ordered a CT of my aorta (next week) as a baseline measurement. He also noted that both my parents should be tested.

I'm nervous about the CT and anxious for the results.

 

[07sti]

Great to hear! Keep us posted on how things go.

 

[river-wear]

If it's the actual CT test you're nervous about, don't be. It's a piece of cake. If they use contrast, it might feel like you're peeing yourself, but you aren't. (So glad the tech warned me in advance; it's so weird.)

Good luck!

 

[UNCGIRL44]

Yes! I am nervous about the test. I am just an anxious person about meds. I don't take anything unless necessary. It took me years just to take ibuprofen! I am always scared of reactions even though I haven't had anything bad happen.

I should not have read up about it online. There are some really terrible stories. Anyway it's a small thing compared to what some people here have been through! But it's just a fear of mine. I just have to pray and have faith it will be okay and that most people do fine.