Question about BAV and Aneurysms

[cbdheartman]

As you may know, I was born with a BAV. Last year I had surgery to repair a 5 cm aortic root aneurysm. My valve was spared.

I was wondering if anyone knows of studies showing what percentage of those with BAV connective tissue syndrome end up having aneurysms further up the aorta. I am taking Avapro on the advice of my Hopkins cardiologist, but I would really like to know if there are studies on this.

Is there anyone on here who was BAV with aortic root aneurysm who later had to have further surgery to repair an aneurysm further up the ascending aorta or even on the descending aorta?

 

[Bill B]

I'm sure this can happen. My surgeon was quite aggressive in replacing all areas of my aorta that were diseased whether or not they met to common size criteria. He authored the article linked below (warning: file is 1.1MB). It won't answer your question, but it just makes the point that various areas of the aorta can be involved in the connective tissue disease associated with BAV and argues that repair of involved aorta should be considered at the time of AVR regardless of size. Affected tissue is myxomatous and can be distinguished by the surgeon during the AVR. However, not everyone accepts this and there is no good information to show that such "anticipatory" repairs provide better results than watching and waiting and only operating again later when called for, if ever.
http://www.billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf

 

[Maryka]

Hi! I know you hear from me a lot, but my friend Carol is an example of someone who has connective tissue problems and who had an ascending aortic aneurysm without any bad heart valves. Her father had died of this problem, but no one figured out in the 1950s that it was possibly a heriditary problem. Anyway, Carol has had to have her whole aorta replaced. She is continuously monitored for aneurysms. So, the prudent thing is to continuously monitor for aneurysms if you ever had one. They are so silent and sneaky and can suddenly dissect with no "notice".

 

[ALCapshaw2]

Heartman -

You may want to check out the Bicuspid Aortic Foundation website http://bicuspidfoundation.com
for more information. I'm thinking they also have a support group where you could ask questions similar to VR.org

'AL Capshaw'

 

[kpearse]

I can't answer your question, but I'll put in my 2 cents. I had a BAV, it was replaced. Now I have a ascending aortic aneurysm and aortic root aneurysm that they are watching. I have a CT scan every 6 Months. Just saying.

 

[Lily]

. . . I was wondering if anyone knows of studies showing what percentage of those with BAV connective tissue syndrome end up having aneurysms further up the aorta. I am taking Avapro on the advice of my Hopkins cardiologist, but I would really like to know if there are studies on this.

Is there anyone on here who was BAV with aortic root aneurysm who later had to have further surgery to repair an aneurysm further up the ascending aorta or even on the descending aorta?

I have recently read some study links and recall getting the impression that it may be possible, though I don't remember specifically where/what I read.

Have you had a chance to read the top "stickie" thread here on this BAV forum? Perhaps you may find your answer there?