Should I push to replace my mid ascending aorta?

[Nesphito]

I just got off the phone with my surgeon. He thinks that we don’t need to replace my mid ascending aorta at this time. It measured at 4.0x3.8 cm.

My thoughts were getting a mechanical valve so I wouldn’t have to get a surgery in the future. But this could mean I’ll have to get one in the future anyway.

So I guess I have a few options:

I could get a tissue valve and then get a mechanical / aorta replacement when my tissue or aorta needs to be operated on.

I can push to get my aorta replaced

Or I can just go with the mechanical and hope nothing needs to be done to my aorta for the rest of my life.

Edit: My anesthesiologist uncle says that in his experience the aorta doesn’t grow after a valve replacement.

 

[Survived03]

I know it's cliche, but you have to decide what is best you. Sorry I forget how old you are but if your hospital and surgical team is highly experienced with aneurysm repairs then you seriously should consider having both replaced. The recovery will be pretty similar in my opinion. You don't want to underestimate the mind games if you decide not to correct the aneurysm and your aorta does indeed continue to expand. Plus, if you can avoid an additional surgery that's even better. You may also want to consider having a genetic panel tested which consist of genes associated with aortic aneurysms. It might help sway you one way or the other.

Regarding the valve replacement stopping the growth of the aneurysm, I have never read that. I'm not saying I don't believe it, but it's the first I have heard this.

Good luck and let us know if we can help in any way.

 

[Nesphito]

I know it's cliche, but you have to decide what is best you. Sorry I forget how old you are but if your hospital and surgical team is highly experienced with aneurysm repairs then you seriously should consider having both replaced. The recovery will be pretty similar in my opinion. You don't want to underestimate the mind games if you decide not to correct the aneurysm and your aorta does indeed continue to expand. Plus, if you can avoid an additional surgery that's even better. You may also want to consider having a genetic panel tested which consist of genes associated with aortic aneurysms. It might help sway you one way or the other.

Regarding the valve replacement stopping the growth of the aneurysm, I have never read that. I'm not saying I don't believe it, but it's the first I have heard this.

Good luck and let us know if we can help in any way.

Thanks for the reply! I’m 33 years old

I have no idea if they’re experienced in aortic aneurysms. On us news it says my hospital is average as far as heart surgery goes. I live in a small state. So not a ton of surgery volume. My cardiologist says my surgeon is the best in the state in his opinion.

My uncle also recommended the same surgeon based on an anesthesiologist he knows who works in my city. He’s a thoracic surgeon and typically does 80-150 hearts a year and did 200 last year. What do you think? Would you feel safe with that?

I’d like to get it out of the way to avoid future surgeries, but I also ready that a prosthetic replacement can cause aneurysms in the descending aorta.

 

[skeptic49]

Do you have a bicuspid aortic valve? If so then the likelihood that you will eventually develop an aneurysm problem is in all probability higher. Good luck with whatever decision you make.

 

[Nesphito]

Do you have a bicuspid aortic valve? If so then the likelihood that you will eventually develop an aneurysm problem is in all probability higher. Good luck with whatever decision you make.

Yes I have a bicuspid valve. I heard that insurance won’t cover an aorta replacement unless it’s above 5cm. Which means I won’t be able to afford it if that’s true.

I saw this study https://www.sciencedirect.com/science/article/pii/S000291492030535X#sec0004

It says there’s no difference in people with BAV

 

[Critter]

My Aorta got to 4.3 cm by the time I had surgery and it was not replaced. That was 3.5 years ago. 4.5 was the number they were going to go by to replace the Aorta. Since that time I did some reading about Marfan’s syndrome, people who have a connective tissue disorder who frequently die of Aortic rupture. A study was done on using Losartan to help the connective tissue to stay together and not continue to expand. So I have been taking a low dose (25mg) of losartan to prevent rupture of the Aorta in the future. Cardiologist said I won’t have a clue if the Aorta ruptures, no pain since my Aortic valve was replaced. Which is good. So far so good.

 

[Critter]

Forgot to add serial echos have not shown enlargement since surgery.

 

[Chuck C]

You indicated in another thread that in 2020 your aortic diameter was fine and now it has grown to 4.0. Do you have the actual measurement? If 'fine' means that it was 3.9cm and now, after 3-4 years it is 4.0, that would be one thing. If 'fine' means that it was under 3.4cm, and in this relatively short time it has grown to 4.0cm, that would be something very different.

I heard that insurance won’t cover an aorta replacement unless it’s above 5cm

Mine did. As I explained in your other thread on this topic, my aorta was replaced when it was only 3.6cm, out of a desire to not get a future OHS down the road.

I can push to get my aorta replaced

If my aorta was showing significant growth in the past 3-4 years, I would probably push for replacement. More data would be helpful in this.

My anesthesiologist uncle says that in his experience the aorta doesn’t grow after a valve replacement

We have several members here who would disagree with your uncle, as they had continued growth of their aortic aneurysm after valve replacement and needed another OHS down the road. I expect that we'll get some input from one or more of them on this thread soon. BTW, my surgeon and cardiologist would also disagree with you uncle on this. You are BAV and the aneurysms associated with BAV are due to a tissue disorder that very often accompanies BAV. This tissue disorder does not go away when the valve is replaced.

I can just go with the mechanical and hope nothing needs to be done to my aorta for the rest of my life.

I would look carefully at the rate of growth and project it out to see if that predicts that you would need another OHS and aortic repair. Personally, I like to look at data, rather than rely on hope. If your aorta is likely to be at 5.5cm in 10 years, based on the rate of growth, then it does not make much sense to get a mechanical valve at this time unless you will also repair the aneurysm now, in my view. With the caveat that I don't know what your rate of growth is, I would probably either 1) get a Bentall Procedure and mechanical valve, which would involve repair of the aneurysm while they are 'under the hood'. or 2) Get a tissue valve and deal with the aneurysm in a future OHS.

 

[Critter]

My diameter has not changed since surgery. If I stated I did it was mistaken. Intra-operative measurement was 4.3. Still there. The ARB agent is supposed to inhibit enzyme that breaks down collagen/connective tissue. Anyways YMMV.

 

[Survived03]

I encourage you to also take a look at this presentation. It lays out multiple factors in aneurysm repair decisions. I also want to make sure I mention again, having the surgery at a heavily experienced institution is a very good idea. You mention you lived in a small town. Can you travel to a major hospital and get another opinion?
Good luck.
https://www.aats.org/resources/2162

 

[Nesphito]

I encourage you to also take a look at this presentation. It lays out multiple factors in aneurysm repair decisions. I also want to make sure I mention again, having the surgery at a heavily experienced institution is a very good idea. You mention you lived in a small town. Can you travel to a major hospital and get another opinion?
Good luck.
https://www.aats.org/resources/2162

More of a small state than a small town. None of our hospitals are really considered top tier for heart surgery. I’m meeting with another surgeon, hopefully soon.

I’m getting anxious about not getting my surgery asap. I sent my current surgeon some more questions. I wouldn’t mind him doing it, I’m just confused in the science of an aortic dissection. Basically all my doctors said there’s a chance to never have the surgery done and that’s why they wait. But it seems like your aorta usually continues to grow, but does that mean the rest of my aorta will grow too?

 

[pellicle]

Good luck.
https://www.aats.org/resources/2162

that was a great presentation!
Anything that properly discusses baselines with proper regard to statistics

Thanks for that

 

[Survived03]

“But it seems like your aorta usually continues to grow, but does that mean the rest of my aorta will grow too?”

From my understanding, that is not the case but you may want to ask an expert. One can have one or the other but not necessarily both. Same goes for cerebral aneurysms. Great question by the way.

 

[pellicle]

But it seems like your aorta usually continues to grow, but does that mean the rest of my aorta will grow too?

I'm not clear about what you mean.

1. if you are talking about the aortic root, then they may be referring to scar tissue from the surgery might stabilise the root (emphasis on might)
2. if you are meaning further up the ascending aortic artery perhaps even less likely (I'd seek clarifications and perhaps a second opinion)
3. if you are meaning the arch itself, then that may also grow and in my case there was concern about that. I was initially monitored a bit more after my surgery

I would seek clarity and perhaps get a second opinion. A (school) friend of mine had a valve and aortic graft put in some 3 years back. He had a Bental with a bioprosthesis fitted because his surgeon had the view "you'd be mad risk not doing that and need another OHS in 5 years".

Do you have some concern about getting a Bental to replace the ascending Aorta?

I posted this a little while back

https://www.valvereplacement.org/threads/big-surgery-coming-up.889406/#post-929965

Best Wishes

 

[Nesphito]

You may also want to consider having a genetic panel tested which consist of genes associated with aortic aneurysms. It might help sway you one way or the other.

Where would you suggest doing something like this? Would 23 and me be a good option? Preferably something fast. Doctor said I should get surgery soon.

I'm not clear about what you mean.

So I was reading research that theorized people with BAV will continue dilating after surgery because there’s structural issues in their aorta as well, but I just read some newer research that found there was no different in progression rates between people with BAV and TAV after getting a valve replacement.

So that older theory would be disproved. Although there are some genes that do contribute to making your valve dilute faster.

Do you have some concern about getting a Bental to replace the ascending Aorta?

Not necessarily, I’m just curious why everyone is telling me not to get my aorta fixed. There are a few things that make me hesitant. Apparently a lot of insurance won’t cover below 5.0cm. Also my hospital doesn’t have an high volume for aorta replacements.

There’s a few things that make me more optimistic of not getting my aorta fixed. I just recently went through some research that shows progression rate is much slower than previously thought (a median of .11mm/year). Apparently it has to do with advancements in imaging like CT scans. I also found another study showing that 4cm and below are much more stable after a valve replacement than higher dilation numbers.

So I guess assuming I don’t have those genes associated with ruptures at lower numbers, theoretically I can go quite awhile without needing surgery. At the rate of .11mm a year it would take 136 years for me to be in the sever aneurysm range.

That’s assuming the research is correct though.

 

[pellicle]

Not necessarily, I’m just curious why everyone is telling me not to get my aorta fixed. There are a few things that make me hesitant. Apparently a lot of insurance won’t cover below 5.0cm. Also my hospital doesn’t have an high volume for aorta replacements.

no idea, but that wouldn't be the advice you'd likely get here (but may get it depending).

That’s assuming the research is correct though.

research needs to be combed through and any given paper isn't a proof.

What did you make of that presentation supplied by @Survived03 ?

Feel free to cite anything you've read which suggests something confusing to you.

 

[3mm]

I don't see any reference in your posts to a 2nd opinion by a surgeon from a different hospital. I strongly urge you to do this. I don't know what your insurance rules are, but there should be some set of alternative hospitals where you can get a 2nd opinion. For example, Mayo Clinic routinely does 2nd opinions on cases from outside Minnesota. They will get all of your existing test results, interview you about your symptoms, history, etc, and then have a Mayo surgeon evaluate your case and tell you what they recommend.

 

[Nesphito]

What did you make of that presentation supplied by @Survived03 ?

It’s good! I’d say it doesn’t contradict any of the other research I’ve seen, but it does make your decision harder, but I want to see what you think about that research.

Feel free to cite anything you've read which suggests something confusing to you.

So this first one has a really interesting premise in the introduction. Basically they’re calling in to question previous growth rates of older studies because they didn’t utilize computer imaging. This study only compared aorta sizes from CT scans which are pretty accurate. They found a much slower growth rate than older studies as well as no difference between BAV patients and TAV patients.

The biggest downsides of the study are it’s a pretty small sample size and it’s only a 5 year follow up. Which doesn’t necessarily mean it’s wrong, but you need more data to verify.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8666776/

This second study doesn’t suffer from the downsides of the previous. It has over 1,000 people, but they only recorded people who were considered dilated (259) and has a 20 year period of data. They also tested patients very consistently at 5-6 month intervals. It’s looking at the diameter of the ascending aorta in patients who’ve had a valve replacement

The interesting thing was they found TAV patients progressed faster than BAV patients, but rates of progression were similar to the previous study and they also found the smaller your diameter the slower you grow. If you look at their chart people with 40mm basically had no progression.

One thing to note: mechanical valves were a predictor as a dilator. Which is interesting and a potential reason to get an aorta repair.

They do state that a flaw in this study was they didn’t utilize CT scans, but transthoracic echocardiography.

https://www.sciencedirect.com/science/article/pii/S000291492030535X#sec0004

 

[Nesphito]

I don't see any reference in your posts to a 2nd opinion by a surgeon from a different hospital. I strongly urge you to do this. I don't know what your insurance rules are, but there should be some set of alternative hospitals where you can get a 2nd opinion. For example, Mayo Clinic routinely does 2nd opinions on cases from outside Minnesota. They will get all of your existing test results, interview you about your symptoms, history, etc, and then have a Mayo surgeon evaluate your case and tell you what they recommend.

I did schedule a second opinion with a highly rated surgeon in my state, but he’s a month out. Not sure I’m willing to wait that long for surgery. I did get on his appointment cancellation list.

Maybe I’ll try to get an appointment with mayo as well as Cleveland. I don’t think I’ll go out of state for a surgery, but it’d be nice to hear what they’d say.

 

[3mm]

I did schedule a second opinion with a highly rated surgeon in my state, but he’s a month out.

I think some of these large cardiac surgery centers have enough staff to make things happen faster, especially if you have some flexibility. I got a written 2nd opinion in just 2 weeks from Mayo clinic. Perhaps call Mayo or Cleveland and ask how long a 2nd opinion will take?

Mayo clinic told me last August that they plan for a 2 or 3 week response on 2nd opinions. I first called Mayo on Aug 14th. On Aug 17th a Cardiac surgery nurse interviewed me for an hour and she then gathered all my test results from various hospitals, etc. 2 weeks later I had Dr Daly's (the surgeon's) written opinion, and just 2 weeks after that (Sep 14th) Dr Daly was cutting me open in Mayo. I was flexible; Dr Daly only had 2 open days before Nov, so I took the earliest opening.