Aorta and valve or just Aorta?

[ryanjrogers]

Hi,

My name is Ryan and I'm new to the community. I am 37 and was diagnosed 5 years ago with a BAV and Aortic Aneurysm at the root. I've been holding steady at 4.9 cm, but latest test showed 5.1 cm. So I'm scheduled for surgery at the end of April. My surgeon feels like since my valve is working well, that we should just replace the aorta. However, my cardiologist disagrees and thinks I should have the valve replaced at the same time since there is a likelihood it will need to be replaced in the future. I've read several of the posts here where people have made the decision to keep their Bicuspid valve, and wondered if anyone can share their opinion on the pros and cons and results based on their experiences.

Thank you!

 

[ALCapshaw2]

I would definitely want to get a Second Opinion from another Surgeon and maybe even more.

Be sure to ask these surgeons about their experience with BAV and Connective Tissue Disorders, how they would recognize signs of CTD, and how they would deal with it. Also what is their experience with Valve Sparing Surgeries and how well spared BAVs hold up IF spared.

As I tell all BAV patients, especially those with Aneurysms which are often a sign of a Connective Tissue Disorder, be sure to find a Surgeon with Experience dealing with those issues. These types of Surgeons are most likely to be found at Major Heart Centers. I would NOT consider a Surgeon with little experience dealing with those issues (i.e. someone who does primarily ByPass Surgery and a few isolated 'Valve Jobs').

 

[Lily]

Hi Ryan - I hope you get a lot of replies. You can do a word search for aneurysm and aneursyms also.

I'm no expert but from the last info I read, the jury is still out (among doctors) about bicuspid valves and aneurysms, whether the chicken or the egg came first. Some apparently think a disfunctional bicuspid valve's jet can sometimes contribute to the blood shooting through the aorta incorrectly, ballooning the aorta. Also, all bicuspid patients aren't necessarily alike; there are apparently degrees of certain flaws within the bicuspid disorder.

Consulting with more than one surgeon is not uncommon. I ended up consulting with three different surgeons. They didn't all have the same opinions.

Welcome to the site. Take care and post again

 

[normofthenorth]

No idea, sorry -- and I once rode an elevator with Tirone David, too (who's name is usually attached to the valve-sparing operation)! If I were generally disposed to get a mechanical valve, I might lean toward getting it now, in the hope of skipping future OHS. If you were attracted to a tissue valve, you might find that your own lasts longer than any replacement, despite its "manufacturing defect". Just a thought, FWIW.

 

[Duff Man]

Sometimes, they do repair bicuspid aortic valves... this is sometimes called a David I procedure. I will tell you that there's not a lot of enthusiasm for the repair, because the tissue of the bicuspid aortic valve is inherently defective. It sounds like your surgeon may attempt to just lop off the aneurysm and leave the root in place... that leaves the aortic root and the aortic valve behind to risk failing later. Not sure if I'd be ok with that. Even with my hardly stenotic mean gradient of about 9mmhg, I think I would still want a new valve. I do not have any desire to face another surgery again. I especially do not want to blow out an aorta through the aortic root, because that is inside of the pericardial sack.

I'm not sure how familiar you are with the bicuspid aortic valve, but it is a connective tissue disorder that effects mostly the aorta and its valve. Many doctors will scoff when you say that it is a connective tissue disorder, but it really is a new school of thought that's just coming to light in the last 5 or 10 years. This really demands a surgeon that is particularly familiar and cognizant of the true nature of the bicuspid aortic valve. If I were "interviewing" a surgeon that didn't recognize these things upfront, I would keep looking.

 

[skeptic49]

I agree with the advice to get a second or third surgical opinion for sure. Another consideration is that at your age, if the valve is replaced it would most likely be with a mechanical valve rather than a tissue valve. This will mean that you will need to be on anti-coagulation therapy indefinately. That's just something you need to be aware of. If it were me, I would err on the side of trying to avoid future surgery, i.e., I would want the valve replaced at the same time the aneurysm is addressed as your cardio suggests.

Best wishes,

Jim

 

[Lynlw]

Hi, I'm glad you are having surgery now. I think wether to replace the bicuspid valve or spare it to have long term succes really depends on a few things, not only what the tissue is like, but also what kind of BAV do you have, meaning what leafelts are connected and where the coronary arteries are, as well as how is the Aortic root is it "normal" in size or diseased, can also make a big difference in wether to save the valve or not.

Also valve sparing surgeries are really one of the surgeries that how much experience the surgeon has (with both tricuspid and bicuspid aortic valve sparing) is really important.

 

[DebbyA]

Ryan,
Welcome to the forums. I don't have any first-hand experience to help you, but do observe from having been here a few years that sometimes the surgeon doesn't know what the valve is like until he gets in there. You might do well to ask anyone you consult how prepared you need to be for valve replacement, i.e. should you consider choosing a "just in case" valve type or model even if now they think the valve does not need replacement? You need to ask lots of questions (as seen in other postings above) and probably ask several surgeons.
Best wishes,
Debby

 

[Duff Man]

Hi, I'm glad you are having surgery now. I think wether to replace the bicuspid valve or spare it to have long term succes really depends on a few things, not only what the tissue is like, but also what kind of BAV do you have, meaning what leafelts are connected and where the coronary arteries are, as well as how is the Aortic root is it "normal" in size or diseased, can also make a big difference in wether to save the valve or not.

Also valve sparing surgeries are really one of the surgeries that how much experience the surgeon has (with both tricuspid and bicuspid aortic valve sparing) is really important.

Great points. Debby also had a good point about the surgeon not knowing if the valve was suitable for repair until he's "in there".

 

[ryanjrogers]

Thank you all for your excellent advice! DebbyA, really appreciated you reminding me that things could change quickly once the surgeon gets in there. I'm taking your advice and getting several opinions. Most seem to be in agreement that since my BAV has no stenosis, no calcification, and no regurg, that they would recommend leaving it alone.

Thanks again for all the great support and responses I received!

 

[Greg a]

Ryan, a heart felt WELCOME to our OHS family

remember now that we have you we don't let go

 

[Natina13]

Welcome to the site , Ryan ! I agree with all the good information above, especially about getting a second opinion of another surgeon. I will be sending positive thoughts your way, as your in the "Waiting Room"...
Best Wishes
Renee

 

[malibu82]

hi there

i had surgery last may 2010 and was told the exact same thing.
the surgery was for the aneurysm but as long as they were in there, they would replace my aortic valve because it will need to be replaced in the future.

so i decided to get a tissue valve.

now thinking back at it, i wish i would NOT have had my valve replaced. i believe by the time my native valve wore out, would probably been around the time a tissue valve might wear out. so its a gamble either way but me personally i believe that would be the case.

however, if i was going with a mechanical valve, i would get it repaired at the same time seeing as how the life span of the mechanical valves are a lot longer then tissue.

just my personal thoughts!

 

[donaud]

Hi all,

This is my first 'official' post but I've been busy exchanging messages with 'Gregory' and 'cdbheartman' regarding our decision to switch Don's, my 37 yo husband, OHS surgery from Cleveland Clinic/Svensson to John Hopkins/Cameron. I cannot thank Greg and Conor enough as well as the members of this board and all of your posts....truly this has provided so much comfort and direction during this nerve-wracking open heart surgery journey. We felt confident that both Svensson and Cameron could perform the surgery successfully, but the proximity of Hopkins (we live in Alexandria, VA, and have three little kids (5, 4, & 2)) and our rapport with Dr. Cameron helped steer our decision locally.

Quick background: In 1994, Don's BAV was discovered during his entry medical exam into the USMC. At the time, an echo confirmed the BAV with the an enlarged aortic root measuring 4.5cm. Given the school of thought at the time showcasing 6.0cm as the surgical target, he was given full clearance...i.e. absolutely no cause for any alarm or concern. As we were expecting our 1st baby, we decided to look into this 'murmur' he remembered them discovering. In 2005, the root measured 4.8 and has grown to 5.1 as of December 2010.

Ryan, your post grabbed my attention because we met with Dr. Cameron for the pre-op yesterday and we discussed 'what' would make him think he should replace the aortic valve while he was repairing the root. We are waiting for echo results as I type this... Don has already made the decision to get a bovine valve if it is determined to be necessary. I'll let you know when we hear back from the doc and maybe this will help shed some light on your topic. Dr. Cameron did mention that the new catheter root replacement options have had better success implanting the new valve into a tricuspid valve rather than a bicuspid valve, so there may be an advantage to replacing the valve with hopes of a catheter operation rather than another OHS in the future. But without a crystal ball, there is just so much speculation as to what will happen

Thanks again to all of you for the educational posts and for helping to inspire our positivity during all this madness

Cheers,
Audra