2nd opinion now or later for Aortic aneurism?

[pellicle]

you bring to light Marfans, but this isn’tnecessarily accurate in regards to an Aneurysm, with BAV. Congenital vs Connective disorder vs Marfans.

firstly I didn't I didn't Warwick did.

secondly its just stats and information ... its not therefore a reflection of your specific situation

 

[Warrick]

Yep I did, and I have posted stats in the past that suggest around 65% of all BAVs result in aneurysm. Some studies suggest higher and some lower so 65% is a pretty accurate middle figure that I consider to be in the ball park.
Over the years from some of the posts here regarding aneurym I would surmise 65% might even be on the low side.
The tissue in the ascending aorta is genetically abnormal in ALL BAV patients according to Grayson whether it results in aneurym or not.


“The exact cause of bicuspid aortic valveis not known, but some medical experts suggest it may be caused by a connective tissue disorder similar to that which causes the heart and blood vessel problems in Marfan syndrome.”

 

[NDNMD]

5.5 just seems so big... a family member just survived a descending rupture. My ascending rupture is around 4.4cm. Seeing what happened to him is terrifying to me. I feel like even 4.4 is large.

 

[Keithl]

5.5 just seems so big... a family member just survived a descending rupture. My ascending rupture is around 4.4cm. Seeing what happened to him is terrifying to me. I feel like even 4.4 is large.

‘More and more now the old norm of 5.5 s being replaced with size based on body type and other factors. They did mine at 5.19cm and were waiting for me to get to 5.0. My original cardio actually wanted me to get done at 4.7, but 2 surgeons said wait until 5.

 

[NDNMD]

‘More and more now the old norm of 5.5 s being replaced with size based on body type and other factors. They did mine at 5.19cm and were waiting for me to get to 5.0. My original cardio actually wanted me to get done at 4.7, but 2 surgeons said wait until 5.

My cardiologist had mentioned 5.5 before. I am 5’11... 4.4 just seems scary

 

[Keithl]

Hell I was at 4.7 for years and glad I waited as I would not have been able to afford the trip to do it at Cleveland as I was firs at 4.7 for like 5 years before I got my surgery.

 

[Maineiacs]

Hi! When my aortic valve was replaced (mech valve - all is well) the surgeon described it as 'bicuspid with a poorly formed 3rd leaflet'. I have a new cardiologist recently since my original retired, the new doctor started asking questions about whether it was a BAV (it's not clear) and if I was screened for an aortic aneurism (no but you'd think the surgeon would have flagged that during my valve replacement). So in I went for imaging and indeed I have a thoracic aortic aneurism, "stable aneurysmal dilatation of the ascending thoracic aorta measuring 5.2 x 5.2 cm. Mid aortic arch measures 2.6 cm. Proximal descending thoracic aorta measures 2.6 x 2.6 cm."

Genetic tests don't show any of the known mutations for connective tissue disorders. I'm being imaged (CT) every 6 mos or so but aneurism looks stable (3 scans so far).
My question is: Should I see a surgeon at another teaching hospital system who specializes in aortic aneurisms or wait till my current team flags me for surgery due to a change in the aneurism dimensions?

I am not in any hurry to sign up for surgery - at the same time, this would be a 2nd surgery and I understand it's a bit tricker than de novo. And I may want to hear if the expert option differs from my team's although I don't expect it to. My cardiologist has of course made sure my bp is lowered etc. with the expected warnings about dissections.

Thanks for your input!

Patty

My valve and my aortic aneurysm were fixed at same time. My aneurysm was 4.6. Very stable.
glad I did both at same time.
I would get it done when it’s 5.5 (AHA) recommends— that’s the new number. The old was 5.0! And or stable vs unstable.
I had severe stenosis of BAV (two leaflets looked and worked like a fish mouth.
All is great!

 

[afraidofsurgery]

I decided to reach out to Cleveland Clinic to get their expert opinion, I appreciate everyone's comments and encouragement. I've read all the guidelines and background info on bicuspid valves and aneurisms yada yada but in real life there are guidelines then there is your specific situation and your surgeon's opinion and recommendation. I'm within the 'zone' for replacement consideration for sure, and my team is taking the 'wait and see' approach to follow the aneurism over time to see if it is expanding and if so at what rate. So far it's stable but that doesn't take me out of the 'zone' and so far I'm not dazzled with the surgery team where I'm at (the surgeon who did my valve replacement has since retired) and to me the aneurism surgery looks a bit trickier and riskier.

 

[pellicle]

and to me the aneurism surgery looks a bit trickier and riskier.

there is no two ways about it, this is correct. Indeed if you have BAV you may indeed have (as I do) a non standard aortic arch anatomy (mine is bovine) and added a not insignificant amount of time on the pump to my surgery. I have to say I had pumphead noticeably for some weeks after surgery.

 

[Chuck C]

Yep I did, and I have posted stats in the past that suggest around 65% of all BAVs result in aneurysm. Some studies suggest higher and some lower so 65% is a pretty accurate middle figure that I consider to be in the ball park.
Over the years from some of the posts here regarding aneurym I would surmise 65% might even be on the low side.
The tissue in the ascending aorta is genetically abnormal in ALL BAV patients according to Grayson whether it results in aneurym or not.


“The exact cause of bicuspid aortic valveis not known, but some medical experts suggest it may be caused by a connective tissue disorder similar to that which causes the heart and blood vessel problems in Marfan syndrome.”

Reading this statistic makes me very glad that Dr. Shemin made the judgement call to replace my aortic root and ascending aorta, even though I was only 35mm, far below the diameter established by the guidelines calling for replacement. He indicated that after looking at my tissue, in his experience I had a very good probability of facing an aneurism down the road. I believe it was a world class call. He told me that he remembered from our consultation that the reason why I was going mechanical is because I want to be one and done and desire to never have to face OHS again. He wanted to make sure that I had the best chance to avoid re-operation due to aneurism