BAV Dilated ascending aorta and symptoms

[Katesmom1007]

Hi, I am new to this forum and also new to the world of BAV. I found out by accident about 5 months ago that I have a BAV, a dilated ascending aorta 4.5 cm, dilated root 3.7cm, mild regurgitation and some dilation of left sinus. All of this was found between a MRI and cardiac CT. I went to the ER with chest pain. The doctors were baffled because I don't drink, smoke or have any risk factors for heart disease. I'm 30 years old. They kept me for 2 days because of an abnormal EKG and a murmur. After a ton of tests I had an answer! I was stunned! I just went to the hospital thinking it was nothing and they would send me right back home.

So, in the past month or so I have noticed an increase in symptoms.... I have always been short of breath when climbing stairs and running. But now I can just walk around the house and feel that way. Sometimes I feel like I am suffocating. I have a hard time getting a deep breath or a satisfying breath. I am also sooo tired! I don't want to do anything. But I have four kids (which also surprised the doctors) I don't have time to be tired!
My question or questions???
Anyone else had or having this issue? Could this mean that I should be considering surgery? I almost would rather get surgery done so I can feel better....
I have an appt tomorrow with my cardiologist so maybe I'll get some answers but I've read so much good info here so far.

 

[AZ Don]

Welcome to the forum and unfortunately to the world of BAV. Aneurysms don't generally cause the symptoms you describe. BAV's do but generally only when there is severe regurgitation or stenosis. Hopefully your Cardiologist will have more answers. Aneurysms generally tend to grow but their has been some speculation and anecdotal reports that Losartan may slow or stop aneurysm growth. Suggest you ask your Cardiologist about this. If your valve is causing your symptoms, then that may be an indication for surgery and as you said, you will likely feel much better after. Although I still have my BAV I had OHS for my aneurysm less than a year ago and felt almost fully recovered just 2 months later, and the recovery was not as bad as I expected.

 

[Heart Of The Sunrise]

Welcome to the forum.....you are symptomatic it appears to be getting worse.... 4.5 cm on your aortic dilation is significant.....if it were me I would have the surgery real soon.
I am now 1 year passed surgery...I feel great...my scar has all but disappeared......daily reading of the post surgery success stories in this forum really helped me cope!
Learn as much about your condition as you can & the ways to fix-it...trust your doctors and hospital and you will do fine!:thumbup:

 

[epstns]

Did they do an echocardiogram? (That's an ultrasound exam of the heart.) If so, then they should have been able to assess the severity of your valve condition. Did they tell you if your valve is mild, moderate, severe or critical? Often times, when we are told we have a serious condition, we tend to become more watchful than normal for symptoms, and we attribute everything to our valve condition. Your symptoms may or may not be directly related to your valve. My advice would be to ask for their assessment of the severity of your valve, and discuss what you're feeling with them. Between you and your doctors, you will be able to decide how serious things are now, and how to best proceed.

 

[Katesmom1007]

Yes, I also had an echo. But at that point they were checking for the source of chest pain . So the BAV wasn't found until I had the MRI the next day. The only thing that was mentioned was that my aorta appeared enlarged in my chest X-ray and in the echo. (He said they didn't get great pictures.) so he ordered the MRI. Maybe they should do another echo and focus on the aortic valve??
And what you said about knowing there is something wrong and being more aware of symptoms, I think that can be true. I'm trying to not think about it and just go on but then I have to stop to breath.

And thanks for the responses. I just feel like it's a ticking time bomb. That might sound dramatic, but I have never had a health problem, so I'm not sure how to react . Anyway, hoping for answers today. And thinking of getting a second opinion.

 

[Midpack]

Hi!

First of all, RELAX. You are most probably feeling many new symptoms just because of the anxiety caused by your recent diagnosis. Once you calm down, you will find that most of those symptoms will probably vanish. In what respect to your diagnosis, you dont have any ticking bomb in your chest. The mild regurgitation is not something to worry about. In my experience, ANYTHING related to your heart that is considered MILD, is not very important. So, if your aortic valve is not stenotic, it is probably working well. Just because it is bicuspid it doesnt imply that it will not work properly!
The only real concern seems your 4.5 aneurysm. But at this point, i beleive it will just be followed periodically.

Of course, allways keep in mind that this is just my opinion, and i am not a cardiologist! The real assessment of your condition must come from your cardiologist.

 

[workmonkey]

Welcome and hello. I agree with Midpack and others - Once you are told you have an aneurysm and BAV, it is only natural to constantly think about how it is making you feel. The reality is this awareness is making you more anxious and nervous, which can cause new symptoms that are most likely not related to the aneurysm or BAV at all. Generally, aneurysms don't create symptoms at that size (mine was operated on at 5.1 cm, and even that was just me being on the safe side. I had no symptoms from it). Also, BAV with mild regurgitation should not cause too many major symptoms at your age. When I learned about my BAV and aneurysm, I also felt like there was a time bomb in my chest, but this really isn't the case. Many, many more people out there have BAV and aneurysms than you might know, so it is common and known issue. The cardiologists/surgeons are the experts here, and they'll tell you if and when it is time to do something about it. In the meantime, relax and know that this is a common thing and your doctors will be able to safely monitor/manage it.

 

[DavesMom]

Hi and welcome to the forum.

I too have a 4.5 cm ascending aortic aneurysm and the phrase "ticking time bomb" definitely describes my feelings about this. My CT scan also showed dilation of the origin of the great vessels and the aortic arch. I had AVR in 1999 and at that time they also repaired an aneurysm.

Oddly, this new aneurysm never shows up on my echo and was only detected through a CT scan. My echos always turn out fine but it's odd that I'm having some of the same symptoms you are - the feeling that you can't get a deep, satisfying breath, an increase in shortness of breath and fatigue. I keep wondering if it's not some sinus or allergy thing going on but who knows? I get my yearly tests in May so we'll see then.

In any case, wishing you the best and keep us posted on your progress. Cheers!

 

[Katesmom1007]

Ok, just left the cardiologist.
My bp was 140/104 and my heart rate was 103! He was very concerned about that and gave me 2 blood pressure meds. He was very concerned to get my heart rate down. He also thinks that I may have an arrhythmia, so I will be wearing a heart monitor for two weeks. He also ordered an echo to check my valve function, and that is in two days.

But he said that he didn't think any of the symptoms were related to BAV. What do any if you think? So, I think I'm going to see what the echo shows on Friday. And possibly call Duke for a second opinion.

 

[Ryan CA]

Hi Katesmom,

Welcome. I have been living with BAV and Stenosis my entire life. An aneurysm has become evident in the last several years as well. I'm 39 now and just getting to the point where surgery is in the near future. Like others have said, its not a time bomb. I hike, mountain bike and am pretty active over all.

Your blood pressure and pulse being elevated like that is not common with the disorders you have. The echo will tell much more, but my guess is that anxiety over the recent discovery is more to blame than the heart defect itself. You are on the right track coming here. Read, learn, absorb and once you begin to have a clear understanding of your situation you will be amazed how the level of anxiety level will come down. In the mean time, I know its easier said than done, try to breath, relax and keep in mind that you are not going through anything your doctors haven't seen and treated before.