Should I push to replace my mid ascending aorta?

Mark Miller said:

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.

Click to expand...

In my experience at major centers, I have also found that they were able to schedule me within weeks, even if they were nationally ranked. Cedar Sinai even caught me by surprise when the surgeon said: "I can get you in next Thursday in you like." Gulp. That was a little too soon for me.

Chuck C said:

In my experience at major centers, I have also found that they were able to schedule me within weeks, even if they were nationally ranked. Cedar Sinai even caught me by surprise when the surgeon said: "I can get you in next Thursday in you like." Gulp. That was a little too soon for me.

Click to expand...

If my insurance won’t cover those calls will it be expensive? I ready online $1,800, but how accurate is that?

Nesphito said:

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/

Click to expand...

I guess you've put study at the bottom (correct me if I'm wrong).

Further to what you've said:

Patients were exclusively male, with average age of 68.1±6.0 years,

does this look like you?

Then:
the majority had a history of smoking (n=52, 78%),
hypertension (n=52, 78%),
dyslipidemia (n=48, 72%).

all of which would likely lead to some sort of plaque formation and perhaps hardening of arteries... be interested to hear from anyone who has a slant on this

Firstly, I can't easily see your aortic diameter ... its not in your bio and its not mentioned on this page (I did quickly dig through your history, but it would be good if you mention it as its the #1 criteria.

... 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.

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

Click to expand...

Some things which stood out to me:


so I don't see that TAV was better than BAV


a very small percentage. I don't like the study because I think its more a study from the perspective of the general population rather than answering your specific question of the role of your aortic diameter (which I don't know) in the risk of a reoperation over time. Speaking of unknowns I don't know your age and its not in your About / bio.

Lots of trees in this lot:





But I did find this:


Which would appear to be relevant to you (depending on your root diameter).

HTH

@pellicle

Thanks for the feedback!

You bring up some interesting points, I’d be curious to see if older patients progressed slower or faster than younger patients.

My root is “normal”, I wish I had the exact measurements, but last time they checked it was 31mm. My mid ascending dilation is 40mm x 38mm. The rest of my aorta is normal as well. Wish I had better measurements. I did go through my family history and nobody had a dissection or an aneurysm. So that’s good news for me. There is family history of high blood pressure, but I have really low blood pressure.

I don’t know if that helps, but I guess I’m juggling risks in my head right now. I live in a small state, so it’s not likely I can get a surgeon who specializes in aorta repair. I’m confident my doctor is good and he’ll repair my aorta if I ask him.

I wonder if it’s just better to push off the surgery risk so in the future I can see a specialist if I have to. The research I’ve seen makes me feel more safe about putting off the surgery, but I know I’ll have a peace of mind if I can do it while I’m already under.

Nesphito said:

My root is “normal”, I wish I had the exact measurements, but last time they checked it was 31mm. My mid ascending dilation is 40mm x 38mm. The rest of my aorta is normal as well.

Click to expand...

OK, so to me there is no clear case for replacement. I'm not really sure why we're discussing it when it's barely at the screening yearly or less level. I guess that your just concerned about a second surgery since your getting a mechanical valve.

I still didn't see your age in there, so


I'm not sure what @Chuck C's measurments were, but mine was something like 5.6cm. This made it the higher priority than my valve. Further they were concerned that they got enough to prevent new enlargement where the graft finished. They monitored me at six months (with CT & Contrast) and again yearly for a few years. Twelve years out and it's all good (and no, I don't know the diameter there).

HTH

pellicle said:

OK, so to me there is no clear case for replacement. I'm not really sure why we're discussing it when it's barely at the screening yearly or less level. I guess that your just concerned about a second surgery since your getting a mechanical valve.

Click to expand...

Fair enough! I appreciate you answering all my questions, but yes I was hoping for a one and done, but it seems like that’s not gonna be the case for me.

pellicle said:

I still didn't see your age in there, so

Click to expand...

I’m 33, sorry! I’ve been posting all over the place, I can’t remember where I’ve posted my measurements and age.

Thanks again everyone for your feedback you’ve all given me a lot to think about.

Nesphito said:

I’m 33, sorry! I’ve been posting all over the place, I can’t remember where I’ve posted my measurements and age.

Click to expand...

just put it in your bio / about section so that you don't need to be posting it all over the place. Year of Birth (YoB) is usually sufficient. That's what that section is for ... allows a responder to go check a single place. Placing it there is no more or less visible to a robot from Google (or a hacker downloading the entire database).

Well at 33 a lot can happen in 20 more years (and you still won't be my age now which is 60). For instance when I was 28 (not so different) I had my 2nd OHS. At that time (it was 1992) we were still unsure about what would happen with a viable living (cryo preserved) tissue homograft. My surgeons here in Queensland thought that given my age a homograft would be "possibly the best choice" because (as was said) "we don't want to see you on warfarin just yet". That lasted me until November of 2011. Which isn't bad. Actually were it not for the aneurysm I'd probably have got another year or three out of it.

That whole institutions study is mentioned in this post:
https://www.valvereplacement.org/threads/blood-infection.888602/post-916875

In the intervening time Point of Care machines came into existence and the possibility of full self management is realised (if not actually common) just as diabetics do.

So I'm glad that I got my time to "travel the world" before being "wedded" to warfarin, as I'm quite sure that (say) in Japan in 2000 I'd have found my three years there profoundly difficult (not to mention the many other places) if I'd had to manage warfarin there with the systems that existed then.

What I'm saying is that no matter that we may plan for "one and done" the reality of reoperation can loom as a statistical possibility. If you have no reservations about a mechanical (I didn't at 48 @ OHS #3) then go for it, and make the gamble that an aneurysm will not be in your future.

If however it is (as it was in both my and @Superman's history) then cross that particular bridge when / if it occurs.

I think you may find it difficult with your measurements (again, perhaps @Chuck C or someone else may have an opinion there) to get a surgeon to cut out what they see as being a perfectly good aortic artery for "an if".

Life is uncertain, and it would be annoying if you got it changed out, then got an infection (endo) at a later date which having a graft made treatment FAR more complex as that whole section may well need cutting out too.

So unless there is some compelling data that I'm missing here, the Aortic Artery seems "not a problem" ... am I missing something?

Best Wishes

Nesphito said:

If my insurance won’t cover those calls will it be expensive? I ready online $1,800, but how accurate is that?

Click to expand...

I'm not sure I understand your question, as I did not reference any calls.

Are you asking about what a second opinion costs? For me, I sent my echo to Cedar Sinai and got a consult with the head of cardio thoracic surgery there. That costs me about $200 to $300, if I recall.

When I went to Scripps to get an opinion, they wanted to do their own echo first. I think that the echo was on the range of $500 and the cardiology consult following the echo was about $200 to $300. At the time, I had already reached my deductible for the year, due to an eye operation 9 months earlier, so I did not come out of pocket, other than my $35 copay.

Insurance usually allows for second opinions. Perhaps some HMOs may differ and may not cover this.

Edited note: If you have an echo or CT scan that you believe to be accurate, some will give you a second opinion using the imagery that you have already had completed. This was the case when I went to Cedar Sinai. In the case of Scripps, the cardiologist strongly preferred that they do their own echo, claiming theirs was one of the best in the nation. In hindsight, somewhat ironically, that Scripps echo ended up being a total outlier, compared to the one echo I had prior and the next 4 echos I received, including another one done by Scripps only 6 weeks later to evaluate me for TAVR. All of their metrics where significantly off and also were in discordance with each other. The second echo I received at Scripps, completed by a different tech, was consistent with past and future echos which I had completed.

So a second opinion can be relatively inexpensive, if they will use your existing imagery. BTW, regardless of what your current hospital tells you, they have to forward your imagery to another provider if you ask them to, in accordance with the Patient's Bill of Rights. If the second opinion involves imagery, then it can get significantly more expensive. Echos cost several hundred $ generally and CT scans can set you back a couple thousand $.

Also, if the second opinion involves both a cardiologist and a surgeon, then that will bump the cost some too.

Chuck C said:

I'm not sure I understand your question, as I did not reference any calls.

Click to expand...

Sorry, major hospitals like that are out of network and in different states so I was assuming I’d just have a call with them.

Chuck C said:

Are you asking about what a second opinion costs? For me, I sent my echo to Cedar Sinai and got a consult with the head of cardio thoracic surgery there. That costs me about $200 to $300, if I recall.

Click to expand...

Yes, that’s what I was curious about. Is that in network? I’d love to have Sinai look at my echo, but if it’s expensive then I’d rather just stay in network.

Thanks for all the info! I didn’t know a bunch of this. I’ll look into it thanks

Chuck C said:

Are you asking about what a second opinion costs?

Click to expand...

The Cleveland Clinic website has the following webpage about virtual 2nd opinions:
https://my.clevelandclinic.org/online-services/virtual-second-opinions
On this webpage it says: "Your virtual second opinion will cost $1,850." I never talked with Cleveland, so I don't know about insurance coverage, discounts based on income, etc.

I am on Medicare, and when I called Mayo Clinic for a 2nd opinion, they did not say anything about the cost. The cardiac nurse talked with me for a full 60 minutes, she also got my medical records from 2 other hospitals, and she had to write a report about my case. Then the cardiac surgeon (Dr Daly) reviewed my file and wrote his evaluation. I figure the nurse invested 4 hours and the surgeon 1 hour in my evaluation. So $1850 for a virtual 2nd opinion is probably a reasonable price. A plumber will charge $100 just to step into my house before they do any work...

I think you really need to check with your insurance company and then talk with your insurance company. NOTE: A doctor's referral to talk with a particular hospital that is "out of network" is NOT a guarantee that your insurance company will pay for a consultation with that particular hospital.

Mark Miller said:

I am on Medicare, and when I called Mayo Clinic for a 2nd opinion, they did not say anything about the cost. The cardiac nurse talked with me for a full 60 minutes,

Click to expand...

Soon after my diagnosis I called Cleveland Clinic and ended up having a discussion with one of their cardiac nurses. She was very helpful and gave me a considerable amount of her time. The $1,850 quote they gave you for a second opinion sounds familiar. I think I was quoted about the same in 2019.

Mark Miller said:

NOTE: A doctor's referral to talk with a particular hospital that is "out of network" is NOT a guarantee that your insurance company will pay for a consultation with that particular hospital.

Click to expand...

Good point. A little story related to the "out of network" issue.

In 2018 I had a fractured orbit from a boxing injury and ended up in the ER. They were in network. However, the physician working the rounds that day, it turns out, was an independent contractor and not in network. I did not even know that was a thing. You would think that if you are at an "in network" ER that all professionals who see you in the ER are also in network. Nope. So, I get a bill from her office for $5,000 for the 20 minutes that she spent with me in ER. That might sound made up. It's not, I assure you. And, they won't accept my insureres contracted rate for her services.

Through a little due diligence I found out that in California this is not legal. If an outside physician is doing rounds at a hospital, as if they are part of the staff, they have to agree to the in network rates. When I cited the law to her office they quickly backed down. I think the insurance adjusted rate was something like $600 instead of $5,000 and that's what I ended up paying. I had not yet reached my deductible, so this was out of pocket. By the time the ambulance took me 40 miles to UC Riverside for my surgery, I had reached my deductible BTW, and then some.

Oddly, this event played an important role in my valve disease journey. Since this injury put me over my deductible, I figured that I might as well get all those tests done that my cardiologist wants me to get to check out that heart murmur, which of course led to the discovery of my BAV abd AS.

Nesohito, I missed your earlier question about where to have AA genetic risk testing. My testing was performed by Invitae. I believe your Dr needs to order this.


If interested, these are the genes integrated. If they identify a mutation(s) they generate a risk score.
The following 35 genes were tested: ACTA2, ADAMTS10, ARIH1, BGN, CBS, COL3A1, COL5A1, COL5A2, EFEMP2, FBN1, FBN2, FLNA, FOXE3, HCN4, LOX, LTBP3, MAT2A, MED12, MFAP5, MYH11, MYLK, NOTCH1, PLOD1, PLOD3, PRKG1, SKI, SLC2A10, SMAD2, SMAD3, SMAD4, SMAD6, TGFB2, TGFB3, TGFBR1, TGFBR2

I had an aortic valve replacement in 2005 and no dilated ascending aorta was noted at the time. I couldn't be happier with my mechanical valve. Jump ahead to a new cardiologist 4 years ago who wondered why this had not been checked recently since the origin of my valve problem wasn't known, and was possibly a bicuspid valve (often travels with aorta aneurisms).

Lo and behold my ascending aorta is 5.2. I got a second opinion on the need for surgery at Cleveland (they do not take scans from other places, I had to redo the CAT scan and echo). We are in a wait-and-see routine, it has not increased over the last 3 years.

My opinion is more part replacements = more risk but I can't support that with statistics for aorta replacement, although if it's working... In my case the dilated aorta wasn't noted at the time of valve replacement and yours doesn't seem to be in the 'need to replace' dimensions.

I'm well aware of the literature on risk of aorta dissection, however risk of surgery is also notable for ascending aorta replacement - I'd encourage you to ask whether your surgical risk increases with the aorta replacement.

My mantra: Statistics do not translate to risk for the individual. They only serve to guide one's decision.

Patty

My experience with CC in 2021:

My AVA and AA both tested severe and my local Cardiologist recommended a consult with a surgeon. I waited six months and had the tests repeated to confirm the test results. They were confirmed.

I contacted the office at CC - Cleveland of the surgeon that I was interested in performing the surgery. I forwarded my images from CT scans and echos along with all visit summaries from my local Cardiologist. I asked that the surgeon review them and provide an opinion on whether or not I was a candidate for surgery at that time and whether he was willing to perform it.

His lead nurse called me and told me that he did think that I was a candidate for surgery at that time and put me on the schedule at my request.

I was not charged for that review. When I went to Cleveland, they had an out of town process where they put me through a 3 day regimen of tests and consults prior to the 4th day when the surgery was scheduled. I was charged for all of those tests and consults along with everything associated with the surgery.

YMMV HTH

afraidofsurgery said:

I'm well aware of the literature on risk of aorta dissection, however risk of surgery is also notable for ascending aorta replacement - I'd encourage you to ask whether your surgical risk increases with the aorta replacement.

Click to expand...

And you may want to compare this risk to the risk of additional surgeries.

OP, I cannot stress enough that AA replacement surgery is complex and you want to be at a surgical center that has experience. I know you have mentioned insurance might be an issue but maybe push back on them. You are young and have a lot of years ahead of you.

I never knew the AA replacement added to the risk. I just thought it was an overall risk to have valve replacement and all that goes with it. Thankfully, my AA has been replaced twice and now it shouldn’t need anymore intervention. My surgeon didn’t say the AA made it more of a risky surgery so I’m actually glad I didn’t know this.

Survived03 said:

And you may want to compare this risk to the risk of additional surgeries.

OP, I cannot stress enough that AA replacement surgery is complex and you want to be at a surgical center that has experience. I know you have mentioned insurance might be an issue but maybe push back on them. You are young and have a lot of years ahead of you.

Click to expand...

Along these lines, when I had to have my gallbladder removed, the team and I agreed it was best to just take the appendix at the same time. My appendix wasn’t giving me any trouble at the time, but a family history plus the motivation to reduce the number of invasive procedures while on warfarin led to the decision. No regrets there at all.

Survived03 said:

And you may want to compare this risk to the risk of additional surgeries.

OP, I cannot stress enough that AA replacement surgery is complex and you want to be at a surgical center that has experience. I know you have mentioned insurance might be an issue but maybe push back on them. You are young and have a lot of years ahead of you.

Click to expand...

Yup I understand, problem is no hospital in my state does a high amount of AA replacement. At least not the numbers associated with lower mortality.

The surgeon I’m seeing is in the top 2 or 3 for most valve replacements surgeries in my state. I’m thinking maybe just asking him to evaluate my aorta when I’m open up and if he thinks I’ll have problems then go ahead and fix it.

Already have had 3 doctors say not to do it.

One surgeon said I couldn’t go wrong either way, but he was out of state.

Nesphito said:

The surgeon I’m seeing is in the top 2 or 3 for most valve replacements surgeries in my state. I’m thinking maybe just asking him to evaluate my aorta when I’m open up and if he thinks I’ll have problems then go ahead and fix it.

Click to expand...

That's good for valve replacement surgeries and should give you confidence. Are they also top 2 or 3 in AA aneurysm repair?
Also, I am not a physician but deciding to replace the aorta after going in to repair a valve seems a bit sketch to me. If they are going in as if to repair the aorta and then only decide on valve replacement that's different. For one, I would think that the cross clamp strategies would be quite different for each procedure.

I am not trying to influence you one way or the other, just supplying things to consider. I know it's a lot to comprehend and can be very stressful.

Survived03 said:

That's good for valve replacement surgeries and should give you confidence. Are they also top 2 or 3 in AA aneurysm repair?
Also, I am not a physician but deciding to replace the aorta after going in to repair a valve seems a bit sketch to me. If they are going in as if to repair the aorta and then only decide on valve replacement that's different. For one, I would think that the cross clamp strategies would be quite different for each procedure.

I am not trying to influence you one way or the other, just supplying things to consider. I know it's a lot to comprehend and can be very stressful.

Click to expand...

There’s not really stats on his AA

He says that he’s been performing a lot of AA surgeries lately and he seems confident that my survival rate wouldn’t be much lower than doing the valve alone.

I called him today and he said he’d repair my aorta if he thinks the walls look thin.