Aortic valve and root replacment?

[TomS]

I've been diagnosed with a need to replace my aortic valve. As well, my aortic root is at 5.0 cm and one surgeon suggests replacing it, while another does not. I have been speaking with the most high profile surgeons in the NY city area and am surprised by the difference in opinion. Both surgeons are known nationally.

To further complicate things, everyone says that I must have this surgery because the situation will only get worse. One surgeon and one cardiologist tells me that "it won't kill me", but will get worse over time and that I should plan to get it done within a year. Another surgeon and cardiologist says that I'm a time bomb and should have it done soon, certainly within the next couple of months, although it is not an emergency.

One surgeon says they would suggest a homograph (human valve), while another says it makes no sense because I just turned 48 years old (am otherwise in great health and am very active), and would need to be back on the table for a more complicated surgery in 10 years.

I went into aortic fibrillation recently while working out very heavily with weights, which led me to this diagnosis. One of my cardiologists said that I may want to have a Maze procedure done to eliminate afib post op.

Any thoughts on all this? Anyone else been dealing with these differing positions? At this point I'm contemplating an August/September surgery, having the root replaced, and going with a mechanical valve. Frankly, as you all must have considered, I wouldn't mind putting it off for another year either.

 

[perrybucsdad]

Tom,

Would you mind me asking who the doctors were that you spoke with?

- John

 

[Karlynn]

Welcome Tom! So glad you found us. From what you wrote sure sounds like you need surgery. Since I'm a mitral valver, I'm not too familiar with the aortic "stuff", so I'm sure others will come along soon. One thing I'm not sure of is if the aortic root measurement of 5 is the same things as having an aortic aneurysm of 5. If it is, then you are definately in need of surgery now and I can't imagine any doctor saying you can wait, or that it's nothing to worry about.

I would definately not be doing any weight lifting now. Your bout of a-fib was a warning sign that you were doing something the heart didn't like.

As far as valve choice - that's the tricky part and where answers are highly subjective. For most, it truly is a matter of personal choice and what you find easier to live with - coumadin for life (for mechanical valves) or repeat surgeries (for tissue valves).

 

[CCRN]

?

?

I've been diagnosed with a need to replace my aortic valve. As well, my aortic root is at 5.0 cm and one surgeon suggests replacing it, while another does not. I have been speaking with the most high profile surgeons in the NY city area and am surprised by the difference in opinion. Both surgeons are known nationally.

To further complicate things, everyone says that I must have this surgery because the situation will only get worse. One surgeon and one cardiologist tells me that "it won't kill me", but will get worse over time and that I should plan to get it done within a year. Another surgeon and cardiologist says that I'm a time bomb and should have it done soon, certainly within the next couple of months, although it is not an emergency.

One surgeon says they would suggest a homograph (human valve), while another says it makes no sense because I just turned 48 years old (am otherwise in great health and am very active), and would need to be back on the table for a more complicated surgery in 10 years.

I went into aortic fibrillation recently while working out very heavily with weights, which led me to this diagnosis. One of my cardiologists said that I may want to have a Maze procedure done to eliminate afib post op.

Any thoughts on all this? Anyone else been dealing with these differing positions? At this point I'm contemplating an August/September surgery, having the root replaced, and going with a mechanical valve. Frankly, as you all must have considered, I wouldn't mind putting it off for another year either.

Don't mean to scare you, but I think someone on this site had a disection and emergency surgery when the aorta was 4.7. I just had the same surgery a couple of weeks ago and it was not too soon for me. My surgeon found several life threatening clots on and around the valve. I'm 45 and my surgeon didn't give me a choice of valve in the end. He told me he felt a mechanical valve/dacron sheath would serve me best even though he is a big advocate of tissue valves. There are quite a few members who have had the MAZE and might give a word or two to you. Do consider having the surgery very soon.

 

[jitojo]

Hi Tom, glad you find VR.com,

From what you say it seems we are on the same boat.

Im 29 yr old active guy with bicuspid valve and 5.0 cm ascending aorta aneurysm. I was told that I was a ticking bomb also so I have OHS scheduled for July 28th. I have choosen a mechanical valve because the idea of having to repeat the operation in 10 years is not really appealing to me. I would only repeat it if the come up with a cutting edge mech. valve that allows me to go off Coumadin, which btw I dont think is a big deal.

Hope this helps.

Jito

 

[Joel]

Welcome

Welcome

Hi Tom.

I am in a very similar situation as yours. My Aortic root is not dialated, but my Ascending Aorta is at 4.9cm. Aortic valve is stenotic, Age 42.

My surgeon said I am in the "Elective" range. The risk of having the surgery is less than not having the surgery over the next 12 months. My surgeon said that the Aorta would continue to dialate. The risk is that is would start to dissect. I think that means start to peel apart, then eventually rupture.

Whats interesting is that he said there are no restrictions on my activities, except he wouldn't recommend heavy weight lifting as that causes your blood pressure to spike.

My surgery is scheduled for July 12th. It was easier for me to accept the surgery because I was diagnosed at age 8. I was told I would need the surgery at some point in my life. That point has finally come.

My plan is for a St. Jude mechanical, but I am flirting with the idea of a tissue valve. Will probably go mechanical for the "Coolness factor" of having a piece of machinery inside. Most people in our age group are better off statistically with a mechanical, but there are reasons for both. The way I look at it, when it comes to valve choices there are no bad decisions. Either one allows you to continue to live.

My grandmother died of this in her forties at a time when that wasn't an option.

 

[901]

Aortic Valve and Root Replacement

Aortic Valve and Root Replacement

Hi Tom! I just found this site a few weeks ago when I found out I need to have surgery. I have several similar "conditions" : aneurysm in ascending aorta, enlarged aortic root, leaking aortic valve, leaking mitral valve and atriel fibrilation.
I was planning to wait until the end of the Summer for surgery because I had all of June and July and part of August planned already. After we visited with the surgeon, my wife convinced me that earlier would be better because the longer I wait, the more likely I would be to have a rupture (the time bomb thing). Ruptures are almost always fatal, although there are a few exceptions that are members on this site.
The surgeon picked St. Jude's Regents for replacements and I've been trying to come up with a reason why that isn't the best choice. I told him I wanted repairs if possible, but I don't want him or anyone else poking around inside my chest again anytime soon. So far, I haven't been able to come up with anything better.
The surgeon told me that the Mitral Valve can often be repaired but usually the Aortic valve cannot (Big Chuck on this site is a recent exception for Aortic repair!). So, I'll either end up with two repairs or two mechanicals.
I don't have to "get used" to taking rat poison because I already went through that due to the AF. I think having to "get stuck" every month is annoying but then I'm not diabetic (some diabetics do sticks six times a day!).
Getting antsy because I'm making the ascent next Tuesday, the 28th.

 

[Tom F.]

Everything i have ever read said that when the ascending aorta gets to 5.0 you need to have surgery. Weightlifting or similar activities should be discouraged until it gets fixed. The risk is that the aorta will begin to split apart, called dissection, and when that happens your chance of survival, even if you are standing in the hospital waiting room, are quite small.

 

[TomS]

Thanks for the replies

Thanks for the replies

I appreciate everyone's reply to my post. I have spoken with surgeons and cardiologists about the risks of dissection at 5.0, so appreciate the warnings. Interestly, as I mentioned, a well known surgeon said that they wouldn't even replace the root because the enlargement is due to the valve and would not get any larger once the valve was replaced. Best of luck to you that are heading in to the OR in July. The surgeon that I am likely going with (I feel funny posting names on the forum, but would be happy to email you separately) strongly suggested a mechanical valve because the risks of a second surgery due to scarring goes up to 5%, which seem to be an important point to consider. I'm likely going to go with an August schedule, hopefully putting me back up close to full speed for the ski season.
Thanks again,
Tom

 

[TomS]

Sounds like the right decision

Sounds like the right decision

Hi Tom.

I am in a very similar situation as yours. My Aortic root is not dialated, but my Ascending Aorta is at 4.9cm. Aortic valve is stenotic, Age 42.

My surgeon said I am in the "Elective" range. The risk of having the surgery is less than not having the surgery over the next 12 months. My surgeon said that the Aorta would continue to dialate. The risk is that is would start to dissect. I think that means start to peel apart, then eventually rupture.

Whats interesting is that he said there are no restrictions on my activities, except he wouldn't recommend heavy weight lifting as that causes your blood pressure to spike.

My surgery is scheduled for July 12th. It was easier for me to accept the surgery because I was diagnosed at age 8. I was told I would need the surgery at some point in my life. That point has finally come.

My plan is for a St. Jude mechanical, but I am flirting with the idea of a tissue valve. Will probably go mechanical for the "Coolness factor" of having a piece of machinery inside. Most people in our age group are better off statistically with a mechanical, but there are reasons for both. The way I look at it, when it comes to valve choices there are no bad decisions. Either one allows you to continue to live.

My grandmother died of this in her forties at a time when that wasn't an option.

Joel, congratulations on moving so quickly. I just wasn't ready to launch into this without a few more weeks of summer and therefore am (hopefully) putting it off until August. I'm with you on the mechanical valve choice. One word of caution though, only one of my doctor's said it was OK to even touch weights. All the others have said it's the worse thing that you can do with this situation.

Enjoy the 4th and best of luck to you.
Tom

 

[Karlynn]

I think having to "get stuck" every month is annoying but then I'm not diabetic (some diabetics do sticks six times a day!).
Getting antsy because I'm making the ascent next Tuesday, the 28th.

My thoughts too. I find it interesting when people give "regular testing" as one of the reasons they wouldn't want be on Coumadin. Yet most people see the routine of daily testing and shots for diabetics as more "normal" than being on Coumadin and testing once a month - or even weekly, as I do. I guess it's because there are so many more diabetics and we see commercials for diabetis testing all the time. It's all on how you look at things I guess.

Good luck for your surgery next Tuesday.

Tom S - sounds like you are doing fine in the information gathering. Let us know when you have a date and we'll put you on our calendar.

 

[TomS]

Thanks

Thanks

My thoughts too. I find it interesting when people give "regular testing" as one of the reasons they wouldn't want be on Coumadin. Yet most people see the routine of daily testing and shots for diabetics as more "normal" than being on Coumadin and testing once a month - or even weekly, as I do. I guess it's because there are so many more diabetics and we see commercials for diabetis testing all the time. It's all on how you look at things I guess.

Good luck for your surgery next Tuesday.

Tom S - sounds like you are doing fine in the information gathering. Let us know when you have a date and we'll put you on our calendar.

Thanks for the message. Some of the questions that remain for me are as follows:
1. What "can't you do anymore" when you are on Coumodin? I understand the bruising/blood clot concerns and the diet concerns around counteracting its blood thinning capabilities, but are there others?
2. I was told that the risk of stroke is 1% per year in the most controlled environment, but is really 2-3% no matter how careful that it is being monitored. Are there any stats on this, like life expectancy on Coumodin?
3. Same questions for a mechanical valve. How does one's life change post op and are there any stats on impact to life expectency?
4. What are the risks of Afib post op and how is it normally treated with a mechanical valve?
5. How do I find out more about the MAZE procedure. My first reaction is that any heart procedure as a precautionary one makes no sense at all unless someone is heavily afib before going in.
I'll continue to browse the site for answers unless someone out there has other thoughts.
Thanks,
Tom

 

[karlaosh]

To replace the root or not seems to be a judgment call. I just had the same surgery with basically the same measurements you have, and the surgeon replaced the valve, root and ascending aorta.

Replacing the root makes the surgery longer and more dangerous. But many doctors think that if you don't replace the root, you're asking for trouble down the line because the root may continue to dilate.

I did enough reading on the subject to believe that my bicuspid aortic valve disease was part of a broader connective tissue disease and that I'd be risking a second surgery if I didn't have the root replaced right off the bat. So I went with a surgeon with lots of aortic root experience.

My surgery was a success, but there were complications. Because of rare troubles with the aortic root replacement, I ended up with both a single bypass and a permanent pacemaker.

Having had one surgery recently , I do know this: I don't want a second anytime soon?never if possible. So despite the complications, I feel good knowing that everything questionable was replaced all at once.

 

[TomS]

Thanks and best of luck

Thanks and best of luck

To replace the root or not seems to be a judgment call. I just had the same surgery with basically the same measurements you have, and the surgeon replaced the valve, root and ascending aorta.

Replacing the root makes the surgery longer and more dangerous. But many doctors think that if you don't replace the root, you're asking for trouble down the line because the root may continue to dilate.

I did enough reading on the subject to believe that my bicuspid aortic valve disease was part of a broader connective tissue disease and that I'd be risking a second surgery if I didn't have the root replaced right off the bat. So I went with a surgeon with lots of aortic root experience.

My surgery was a success, but there were complications. Because of rare troubles with the aortic root replacement, I ended up with both a single bypass and a permanent pacemaker.

Having had one surgery recently , I do know this: I don't want a second anytime soon?never if possible. So despite the complications, I feel good knowing that everything questionable was replaced all at once.

Karla,
I'm sure that you're glad to have it over with. Regardless of the complicatons, you made it. Mine is still ahead. Are there any specific areas that you went to for research in making your decision?
Thanks and best of luck,
Tom