Aortic Valve Surgery on the Road Ahead

[vp69]

Hello everyone, I found this forum a few months ago and it has been extremely helpful in being able to read all the stories of people here who have gone through similar valve related issues. I'm currently in my mid 20s and was diagnosed over a decade ago with aortic valve regurgitation that was moderate after contracted rheumatic fever. I was recommended for AVR but up till now have not undergone it. The last couple years my LVEDD has been pushing the high 6s and LVEF dipping into the lower 50s and although I have no symptoms unless I exert myself (get SOB after a while and obv cannot meet my age standards on a stress test) so I think it's just about time to do something this year. I'm encouraged to see the advances being made in field of aortic valve repair and after all this time I have severe AR because of a RCC prolapse, no calcification or stenosis, no enlarged root issues so it is an isolated aortic insufficiency problem. I would prefer to be able have this repaired rather than having to deal with the prospect of a mechanical valve and warfarin or multiple ops with tissue valves failing quickly in younger people.

If anyone has any experience with undergoing repair for isolated aortic valve insufficiency or any stories that would be helpful. I'm hopeful that the introduction of the HAART annuloplasty geometric ring and more experience overall in aortic valve cusp pathology will help repairs be more durable, obviously given the size of my ventricle I would only want to have a repair attempted if a good and durable repair with little to no AR is possible

 

[dick0236]

Hi VP69 and welcome to this forum. Your story seems very similar to mine and I think you will find a wealth of info from this group. I can't help with questions about repair since I had an aortic valve replacement and I can lend my support to another young guy who has to deal with this.

 

[pellicle]

Hey

welcome aboard. I had something like that done but it was a long time ago (40 years) and lasted about 18 years before (at 28) I needed a valve replacement.

Aortic valve surgery (while nothing trivial) is not as bad as ones imagination may make it to be.

I've had 3 surgeries and each time within a couple of years wit was all just in the rear vision mirror.

Best Wishes

 

[cldlhd]

Hello everyone, I found this forum a few months ago and it has been extremely helpful in being able to read all the stories of people here who have gone through similar valve related issues. I'm currently in my mid 20s and was diagnosed over a decade ago with aortic valve regurgitation that was moderate after contracted rheumatic fever. I was recommended for AVR but up till now have not undergone it. The last couple years my LVEDD has been pushing the high 6s and LVEF dipping into the lower 50s and although I have no symptoms unless I exert myself (get SOB after a while and obv cannot meet my age standards on a stress test) so I think it's just about time to do something this year. I'm encouraged to see the advances being made in field of aortic valve repair and after all this time I have severe AR because of a RCC prolapse, no calcification or stenosis, no enlarged root issues so it is an isolated aortic insufficiency problem. I would prefer to be able have this repaired rather than having to deal with the prospect of a mechanical valve and warfarin or multiple ops with tissue valves failing quickly in younger people.

If anyone has any experience with undergoing repair for isolated aortic valve insufficiency or any stories that would be helpful. I'm hopeful that the introduction of the HAART annuloplasty geometric ring and more experience overall in aortic valve cusp pathology will help repairs be more durable, obviously given the size of my ventricle I would only want to have a repair attempted if a good and durable repair with little to no AR is possible

I had aortic valve repair but it's hard to compare like for like in my opinion. In other words my valve had trace leakage and I wouldn't have had surgery to repair it, mine was done while they were in there replacing my aortic aneurysm, also I have a BAV which I assume by your post you don't. It's hard to give specific advice because most of us out here aren't surgical experts and it also depends on the condition of your valve. If you choose to go the repair route I would go with a high volume facility that specializes in it. The Cleveland clinic is an obvious one, I had mine done at the hospital of the University of Pennsylvania as they are a high volume facility and they specialize in aortic valve repair also. Specifically Dr Bavaria did my surgery and he's pretty big on repair if possible. I was 45 when I had my surgery but I told him I only wanted repair if he thought it would last, hopefully a lifetime but who knows, if not I was going to go mechanical. Best wishes

 

[vitdoc]

Ultimately the decision on repair vs replacement often is made when the valve is visualized. So usually one should be thinking of replacement also as a possibility. Find a surgeon who is experienced at both. Good luck.

 

[Tom C]

I had a repair done on my aortic valve 8 years ago and was one of the first to receive an annuloplasty ring at the base of the valve. My cardiologist says everything is so stable he only wants me to get an echo every three years. I'm 59 and he thinks I may never need another surgery. At this point, I feel it was a good choice for me to get the repair.
I agree that there are only a few places that are really proficient at valve repair. I had mine done at the Mayo Clinic by Hartzell Schaff. Along with Dr. Bavaria, he has continued to develop valve repair and train others in what is a fairly difficult surgery. Mechanical and tissue valves need to be well sutured in place and not leak, but the sutures on trimmed/repaired cusps need to be able to hold through 100,000 somewhat violent beats a day. But after a few days your own tissue grows over the sutures - its strong and your body recognizes the rebuilt cusps as its own. I also had one cusp raised up so that both cusps were on the same plane and the two cusps were sewn together at the outer edges. The point of the ring and the additional sutures is to create stability, the key to longevity as I understand it. So far so good. Definitely something for you to consider.

 

[vp69]

Thank you all for the encouragement and advice, yes I am seeking places that specialize in repair and have experience with replacement in case it's not possible. Not sure what I want to do if it's a replacement, I wish Foldax was more tested/readily available but thinking if tissue then probably Resilia and if mechanical probably On-X, but still first goal is repair if feasible or even willing to attempt Ozaki if an experienced surgeon can do it

 

[vp69]

I had a repair done on my aortic valve 8 years ago and was one of the first to receive an annuloplasty ring at the base of the valve. My cardiologist says everything is so stable he only wants me to get an echo every three years. I'm 59 and he thinks I may never need another surgery. At this point, I feel it was a good choice for me to get the repair.
I agree that there are only a few places that are really proficient at valve repair. I had mine done at the Mayo Clinic by Hartzell Schaff. Along with Dr. Bavaria, he has continued to develop valve repair and train others in what is a fairly difficult surgery. Mechanical and tissue valves need to be well sutured in place and not leak, but the sutures on trimmed/repaired cusps need to be able to hold through 100,000 somewhat violent beats a day. But after a few days your own tissue grows over the sutures - its strong and your body recognizes the rebuilt cusps as its own. I also had one cusp raised up so that both cusps were on the same plane and the two cusps were sewn together at the outer edges. The point of the ring and the additional sutures is to create stability, the key to longevity as I understand it. So far so good. Definitely something for you to consider.

Tom that is very encouraging, curious how bad was your regurgitation when you had the operation? And it sounds like you had a three leaflet valve and one of the leaflets was prolapsed or something like that? My valve is three leaflet and has a right coronary cusp prolapse, but with severe AR grade 4 regurgitation, no calcification. Hoping the tissue quality is decent enough for a repair to be attempted

 

[cldlhd]

I had a repair done on my aortic valve 8 years ago and was one of the first to receive an annuloplasty ring at the base of the valve. My cardiologist says everything is so stable he only wants me to get an echo every three years. I'm 59 and he thinks I may never need another surgery. At this point, I feel it was a good choice for me to get the repair.
I agree that there are only a few places that are really proficient at valve repair. I had mine done at the Mayo Clinic by Hartzell Schaff. Along with Dr. Bavaria, he has continued to develop valve repair and train others in what is a fairly difficult surgery. Mechanical and tissue valves need to be well sutured in place and not leak, but the sutures on trimmed/repaired cusps need to be able to hold through 100,000 somewhat violent beats a day. But after a few days your own tissue grows over the sutures - its strong and your body recognizes the rebuilt cusps as its own. I also had one cusp raised up so that both cusps were on the same plane and the two cusps were sewn together at the outer edges. The point of the ring and the additional sutures is to create stability, the key to longevity as I understand it. So far so good. Definitely something for you to consider.

That's good to hear. I was told to get an echo every two years. So far everything looks stable and I'm 6 years out. After my surgery Dr Bavaria told my wife and mother, very enthusiastically, that I would never need surgery again on it. Obviously there's no guarantees but I'm hoping he's right. Hoping the same for you, cheers

 

[cldlhd]

Tom that is very encouraging, curious how bad was your regurgitation when you had the operation? And it sounds like you had a three leaflet valve and one of the leaflets was prolapsed or something like that? My valve is three leaflet and has a right coronary cusp prolapse, but with severe AR grade 4 regurgitation, no calcification. Hoping the tissue quality is decent enough for a repair to be attempted

My situation's a little different as I have a BAV, but mine had very little leakage My aneurysm was the cause for surgery as I said in the previous post. But before my surgery Dr Bavaria told me that he was pretty certain my valve could be repaired but he would not know if the tissue would accept a stitch and hold until he was in there. I also had no calcification fortunately.

 

[Tom C]

I had a bicuspid valve and severe regurgitation prior to surgery. The decision to operate was based on the size of my left ventricle but I certainly had been getting very tired for at least six months before surgery. The non-medical description of my valve was "floppy." The cusps simply didn't seal very well, causing the regurgitation. So in that situation the surgeon tightened both cusps with plications, which I think means wedges are cut out and the two sides are sewn together. Nevertheless, the result is a tighter fit of the cusps. My valve is still bicuspid, but simply works much better. I currently have trace to mild regurgitation and feel great with that. Hopefully that continues.
When I made the decision to try a repair I used 12 years as the break even point. If I get that far, it was worth trying to hit a home run - that being a permanent repair.

 

[vp69]

I got back from consulting with my first surgeon. So good news is they think from the echocardiograms and the images they can see there is minimal calcification , pressure gradients across valve are low teens so there’s probably not too much damage and they think the way it’s opening and closing makes it decent case for possible repair, Ofc no 100% guarantee till they go in but all the markers check off.
I however was surprised to learn that even though my aortic root is totally normal after 10 years of severe regurgitation and having a tricuspid valve the procedure they want to do is a VSRR / T. David Procedure.

I was a bit surprised because my aortic dimensions are normal and annulus not severely dialated, I thought they might offer an annuloplasty ring but they said they don’t use the new HAART 300 aortic annuloplasty rings and aortic valve repair is more durable with the VSRR. But I question if the data supports that in cases where the regurgitation is mainly because of cusp pathology vs a dialated annulus.

What are the potential complications post surgery of having your root replaced with a Dacron tube long term? I can’t find any in my research but say if the repair is totally durable can replacing the aortic root cause future problems? I know the surgery itself becomes more complex but curious about any known long term issues with getting rid of your native aortic root. Any advice or opinions or experience on this would be helpful. Thanks!

 

[cldlhd]

I got back from consulting with my first surgeon. So good news is they think from the echocardiograms and the images they can see there is minimal calcification , pressure gradients across valve are low teens so there’s probably not too much damage and they think the way it’s opening and closing makes it decent case for possible repair, Ofc no 100% guarantee till they go in but all the markers check off.
I however was surprised to learn that even though my aortic root is totally normal after 10 years of severe regurgitation and having a tricuspid valve the procedure they want to do is a VSRR / T. David Procedure.

I was a bit surprised because my aortic dimensions are normal and annulus not severely dialated, I thought they might offer an annuloplasty ring but they said they don’t use the new HAART 300 aortic annuloplasty rings and aortic valve repair is more durable with the VSRR. But I question if the data supports that in cases where the regurgitation is mainly because of cusp pathology vs a dialated annulus.

What are the potential complications post surgery of having your root replaced with a Dacron tube long term? I can’t find any in my research but say if the repair is totally durable can replacing the aortic root cause future problems? I know the surgery itself becomes more complex but curious about any known long term issues with getting rid of your native aortic root. Any advice or opinions or experience on this would be helpful. Thanks!

I had my BAV repaired with the David V procedure. My root, ascending and hemiarch were replaced. I've had no issues. The only issues I've ever heard of is a surgeon screwing up the coronary artery attachments but I'm sure that's rare. I've read that replacing the root gives a better chance of a durable repair

 

[ATHENS1964]

Νot all cases are the same, as you can see in the figure the merger has many variations. In
In my case, they had told me before that it could not be repaired .
https://www.sciencedirect.com/science/article/pii/S0022522307002371

 

[Chuck C]

I however was surprised to learn that even though my aortic root is totally normal after 10 years of severe regurgitation and having a tricuspid valve the procedure they want to do is a VSRR / T. David Procedure.

It is perfectly reasonable for you to ask them why they want to do this. You have every right to know.

 

[cldlhd]

I got back from consulting with my first surgeon. So good news is they think from the echocardiograms and the images they can see there is minimal calcification , pressure gradients across valve are low teens so there’s probably not too much damage and they think the way it’s opening and closing makes it decent case for possible repair, Ofc no 100% guarantee till they go in but all the markers check off.
I however was surprised to learn that even though my aortic root is totally normal after 10 years of severe regurgitation and having a tricuspid valve the procedure they want to do is a VSRR / T. David Procedure.

I was a bit surprised because my aortic dimensions are normal and annulus not severely dialated, I thought they might offer an annuloplasty ring but they said they don’t use the new HAART 300 aortic annuloplasty rings and aortic valve repair is more durable with the VSRR. But I question if the data supports that in cases where the regurgitation is mainly because of cusp pathology vs a dialated annulus.

What are the potential complications post surgery of having your root replaced with a Dacron tube long term? I can’t find any in my research but say if the repair is totally durable can replacing the aortic root cause future problems? I know the surgery itself becomes more complex but curious about any known long term issues with getting rid of your native aortic root. Any advice or opinions or experience on this would be helpful. Thanks!

I would certainly ask. I believe replacing the root helps stabilize the valve and is advantageous for the repair

 

[vp69]

I had a consultation with the surgeon, as you all have been saying the real only way to know if it's repairable is after he opens me up. The echo looks ok, severe AI with possible RCC prolapse, he thinks there may be some calcium on the leading edge of the right leaflet but the overall gradient across the valve is in the low teens (10-12), so not sure that seems to suggest not much calcium. Movement looks alright as well so maybe they are still pliable though mildly thickened, hopefully calcium isn't extensive and can be removed. He wants to do a David Procedure VSRR because it will allow him to provide annular stability and possibly remodel how the leaflets /commissures, etc. are arranged that might help with leak closure. He also mentioned straightforward they might go in and decide this valve is not worth saving and just replace it in which case I am considering the resilia tissue valve, I know I'm quite young but I want to take my risks with it and hope that it will last me 10-15 years. operation will be through a full sternotomy so that they don't have me on CPB for too long since my ventricle is already large and weakened.

 

[almost_hectic]

For those who chose repair, what do the tell you is the likelihood that it will last (and how long) or need additional surgery down the road? Having gone through one OHS I can tell you that for me, I would not willingly do it again. So I have to think if I was forced to make that choice I would opt for replacement rather than repair. But thats only because I already know what its like to experience the surgery and recovery... whereas most in that scenario do not

 

[vp69]

For those who chose repair, what do the tell you is the likelihood that it will last (and how long) or need additional surgery down the road? Having gone through one OHS I can tell you that for me, I would not willingly do it again. So I have to think if I was forced to make that choice I would opt for replacement rather than repair. But thats only because I already know what its like to experience the surgery and recovery... whereas most in that scenario do not

I think at my age I've kind of baked in to the fact that I'm probably going to need multiple operations with a replacement whether that's tissue or mechanical though I agree it's probably much less for mechanical but I don't want to be on Warfarin this young. WIth the repair I've been told worst case is I get re-operated on in a year, best case perhaps never. It all depends how they decide to repair it and how good or bad the tissue is when they go in. If they have to augment it with bovine pericardium to extend the leaflets most likely that will be a predictor of failure but that still might get me 10 years hopefully a decent chance. Given I've lived with severe AR for over a decade and there's been no change in my regurgitant fraction or further structural valve degeneration I'm hopeful my tissue is at least healthy enough to be worked with and that there's just a prolapse and that there's still enough tissue to work with something

 

[almost_hectic]

I follow ya. Nobody can make that choice for you of course. Lots of debate in the forums here as Im sure you've seen, with opinions on both sides. I decided mech valve almost from the very beginning and that was also my surgeons recommendation, so it was easy for me. I will say I was also very nervous about what life on warfarin would mean. But I can tell you now, its really no big deal at all. You learn it and you adapt, but really its such a minor thing, and it hasn't limited what I do or how I do things in any way. Especially when I consider it means I will likely not need any future surgery.