Help I have BAV and thoracic aneuryms questions??

[tammy70]

I am new to this site, but I have found a lot of good information. I am 34 years old and have known for a while that I have a biscupid aortic valve. My cardiologist has me get echo's every 6 months and I also take Norvasc 5mg daily. I exercise 3-5 times a week, my blood pressure is normal, and I do not smoke. The echo I had six months ago stated that my aortic stenosis and insufficiency was moderate and my aortic root was dilated to 3.7cm. It also stated moderate pulmonary hypertension. In the last few months have noticed more swelling of my feet and legs and more shortness of breath, especially with my work outs. The latest echo showed the same thing but that my right ventricle is at the higher end of normal, both atrium are at the higher ends of normal, my aortic valve opening is 1.1, and the aortic root is 4.2cm, and now they see coarctation of the descending aorta. My maternal grandmother died of a ruputred aneurysm and my father has had three repaired and he has another one now that is being watched. I asked my cardiologist if I could have a CT scan and he stated that he would not start that until the aneurysm grew to 5cm. Does anyone have any advice and does this sound like the right advice?

 

[Ross]

Hi Tammy and glad to see you posting finally! Wondered if you were going to lurk forever or what.

They should be performing surgery at 5, not thinking about it. My aneurysm never hit 5 and it blew! I think you have a little farther to go yet, but your pretty much in the ball park now. The bad thing is, these things can take off quickly and put you in danger instantly. I think I'd be getting copies of all my reports and get ready to get a second opinion. I think they are waiting too long unnecessarily.

 

[JimL]

Welcome, Tammy! I had my BAV replaced with a St. Jude valve three years ago. The words in your post that jumped out at me were the swelling and the shortness of breath. Those things snuck up on me rather quickly, and I almost didn't get the surgery in time.

I think you need to get answers from your cardiologist, or perhaps a second opinion about whether you need surgery, when you need it, and when would be a good time to talk to a surgeon. It seems that surgeons typically recommend surgery a lot sooner than cardiologists. The echos are not always tremendously accurate, and perhaps it is time for the next level of tests. And what Ross said, seconds before me.

 

[tammy70]

Thank you for responding to my question. How do you go about getting a second opinion? I am afraid of making my cardiologist mad.

 

[tammy70]

Rachel, thank you for the wonderful information. It is nice to know that their are other people out there who have gone through the same thing.

 

[Turkey Hunter]

Different for everyone

Different for everyone

In one aspect I agree with Ross......

In yet another, it depends on your individual artery & vein sizes.

If my memory serves, my ascending aortic anuerysm was approximately 5.4 at the time of my surgery. Ross' blew before 5.0 and mine made it quite a bit beyond. (I'll grant you Ross that I am a very large framed man at 6'5") But my docs said norm for me would've been 4.5 or so.

I guess what I am stating is simply, if your norm is 4.0...then waiting 'til 5.0 may be too long.

Get that information from your doc, and maybe get a second oppinion.

God Bless,

Ben

 

[Barry]

Thank you for responding to my question. How do you go about getting a second opinion? I am afraid of making my cardiologist mad.

If your cardiologist gets angry with you for seeking a second opinion, you not only need a second opinion, you need a new cardiologist.