Ascending aortic aneurysm - questions and concerns

[jmo3]

Hello all, I've been inspired to post by some of the new posts I've been reading as I've got some questions and concerns about my AAA. After my AVR in 2016 my surgeon said there was around a 10% chance I would need another OHS to replace the ascending aorta which eased my mind at the time.

That being said, the measurement of the aneurysm has fluctuated over the past decade as follows (below) as measured by both echocardiogram and CT scan at various intervals. I'm wondering if anyone else has had this experience of fluctuation over a longer period of time. I'm also wondering what lifestyle factors contribute to the progression of an AAA including exercise, alcohol consumption, etc. Thanks in advance for any insight.

2007 - 3.9cm (echo)
2008 - 4.2cm (echo)
2009 - 4.0cm (echo)
2016 - 4.1cm (CT/AVR surgery)
2018 - 4.2/4.3cm (CT/echo)
2019 - 4.3cm (echo)

 

[user 16827]

I see you were born bicuspid

regarding the size variations the echo is less reliable than the CT, there is a degree of technician interpretation involved with the echo, if the echo have had different techs you are more likely to get slight variations in size.

Your genes will probably decide when its grows however the given advice is not to lift to your maximum
if you like to use the gym and avoiding spiking your BP

It's great to read that you have been ' inspired '

the knowledge and support here is superb

Best wishes

 

[LoveMyBraveHeart]

We were told the aneurysm may need surgical intervention closer to the 4.5-5cm mark, but it was dependent on patient size and stature. When Mathias got his repaired, it was 5.2 cm and he could feel the aneurysm in his throat after exerting himself, caffeine consumption, and hard alcohol consumption, or being irritated by something (all things I attribute to an elevated blood pressure) This is only his personal experience... he would tell me he felt like he had a lump in his throat (he'd always point to his clavicular notch), would start coughing and eventually gag because it felt swollen there. He would also get acid reflux type symptoms, but this was before we know of the aneurysm so perhaps he was finding symptoms that he could explain that someone could relate to the physical feeling. I'm not sure if this helps at all... he only learned of his aneurysm about a year ago, and it was at the point where it needed surgical intervention, so there werent many tests before hand to track growth.

 

[Superbob]

Hello all, I've been inspired to post by some of the new posts I've been reading as I've got some questions and concerns about my AAA. After my AVR in 2016 my surgeon said there was around a 10% chance I would need another OHS to replace the ascending aorta which eased my mind at the time.

That being said, the measurement of the aneurysm has fluctuated over the past decade as follows (below) as measured by both echocardiogram and CT scan at various intervals. I'm wondering if anyone else has had this experience of fluctuation over a longer period of time. I'm also wondering what lifestyle factors contribute to the progression of an AAA including exercise, alcohol consumption, etc. Thanks in advance for any insight.

2007 - 3.9cm (echo)
2008 - 4.2cm (echo)
2009 - 4.0cm (echo)
2016 - 4.1cm (CT/AVR surgery)
2018 - 4.2/4.3cm (CT/echo)
2019 - 4.3cm (echo)

jmo3: Good for you for keep your lab reports and numbers. My decidedly non-medical layperson take from looking at those numbers is that your AAA has been remarkably stable for the past 12 years. Often the recommendation is surgery at 5.0 cm, but it can go somewhat lower than that if you are BAV especially with connective tissue syndrome.

I think measurements in these tests (particularly the echo) are not pinpoint precise. Different techs and different docs can look and get slightly different readings. You no doubt can find a lot more about my history if you do a search on site but briefly I had a leaky aortic valve, enlarged aortic root, and ascending aortic aneurysm in 2005 at age 63 -- which were taken care of nicely with a Bentall's Procedure.

Over the nearly 15 years since then, I have been periodically warned by various cardios of an incipient AAA but I am a plus-sized guy so I convinced them to wave it off. That changed this spring, when an echo measured my AAA at 5.6 cm, and a follow-up CT at 5.3. I sent the CT to my original surgeon, and his chief nurse said he read it at 5.7 and was concerned about it. Then I went to another great surgeon at UNC (a renowned expert in aortic aneurysms) and he read it at 5.5 cm. So you see the fluctuation there just from the readings of my CT from this past March.

My new surgeon was not alarmist but clearly he thought I should have it taken care of. I've reviewed all my numbers over the years, and am now resigned to it. My surgery is scheduled for next month. As for your question about exercise and such, I have searched that topic a lot and find only that if you do have an AAA, beware lifting heavy weights that could strain that area and possibly lead to a rupture. Moderate exercise is usually recommended. I may have some links to share on this topic. Will try to find them.

I wish you all the best -- including stable AAA numbers with only slight "measurement error" fluctuations.

 

[user 16827]

I was searching for some great exercise links i remember that were posted & found one of your previous posts.....

There was some great advice given

https://www.valvereplacement.org/th...ascending-aortic-aneurysm.887064/#post-887641

 

[mecretired]

I was diagnosed with an aneurysm of my ascending aorta in 2010. It was 5.4 when that cardiologist found it. New cardiologist said old cardiologist obviously missed it because I had annual echoes. I haven’t seen THAT cardiologist since. I had my surgery where my New cardiologist practices. I have a St Jude grafted valve—also had aortic root replaced. My doctor told me I could do anything that I did before. I’m not sure I believed him. But 9 years later, I’m good. I probably do more than I did before because I work out and am in better shape.

 

[vitdoc]

I had a somewhat similar story. I had aortic valve repair at age 29 with a tissue valve in 1977. Probably one of the earliest tissue valves. Not sure if there was any idea at that time of the likely lifetime of the valve. It started to breakdown 5 1/2 years later and was replaced with a St. Jude in 1983. Good for 23 years until when on a bike ride I went into A. Fib and was seen in an emergency room and had a echo prior to having the A. Fib resolved. Next morning my friendly cardiologist reviewing the echo at the hospital called me and said "You better find yourself a good surgeon, you have a 6.5 cm aortic aneurysm". My previous cardiologist had completely missed this finding on previous echos.
Needless to say I departed from that cardiologist had aortic aneurysm surgery with a replaced St. Jude valve and developed 3rd degree heart block requiring a pacemaker in 2006. Still going strong at 70 and still biking close to 100 miles/ week. Also the surgeon in 2006 when I was 58 said "you don't want a tissue valve since you don't want your chest potential cracked a 4th time".
Incidentally in 2016 I had sudden decompensation of the mitral insufficency that had been followed for years. I went into failure within a week. I checked all over the US with the top surgeons. No one was really excited to tackle my case. I might ruin their statistics. I ended up getting a mitral clip at Cedars in Los Angeles. It was a miracle. Worked for me perfectly went out of failure and got back on the bike. And surprisingly after over a year of permanent A. Fib I spontaneously went back to normal sinus rhythm. Possible due to the decreased pressure on the Left Atrium. ( I had three ablations in the past that had worked for a few years). So I guess all of us who have these problems are very lucky we live in a time that allows physicians to deal with these problems so effectively.

 

[mecretired]

I had a somewhat similar story. I had aortic valve repair at age 29 with a tissue valve in 1977. Probably one of the earliest tissue valves. Not sure if there was any idea at that time of the likely lifetime of the valve. It started to breakdown 5 1/2 years later and was replaced with a St. Jude in 1983. Good for 23 years until when on a bike ride I went into A. Fib and was seen in an emergency room and had a echo prior to having the A. Fib resolved. Next morning my friendly cardiologist reviewing the echo at the hospital called me and said "You better find yourself a good surgeon, you have a 6.5 cm aortic aneurysm". My previous cardiologist had completely missed this finding on previous echos.
Needless to say I departed from that cardiologist had aortic aneurysm surgery with a replaced St. Jude valve and developed 3rd degree heart block requiring a pacemaker in 2006. Still going strong at 70 and still biking close to 100 miles/ week. Also the surgeon in 2006 when I was 58 said "you don't want a tissue valve since you don't want your chest potential cracked a 4th time".
Incidentally in 2016 I had sudden decompensation of the mitral insufficency that had been followed for years. I went into failure within a week. I checked all over the US with the top surgeons. No one was really excited to tackle my case. I might ruin their statistics. I ended up getting a mitral clip at Cedars in Los Angeles. It was a miracle. Worked for me perfectly went out of failure and got back on the bike. And surprisingly after over a year of permanent A. Fib I spontaneously went back to normal sinus rhythm. Possible due to the decreased pressure on the Left Atrium. ( I had three ablations in the past that had worked for a few years). So I guess all of us who have these problems are very lucky we live in a time that allows physicians to deal with these problems so effectively.

Sounds like you are a true walking miracle several times over. How can cardiologists miss an aneurysm that large? How many deaths have they caused that no one even knows about?

 

[Protimenow]

"How many deaths have they caused that no one even knows about? "

Sadly, we'll probably never know...

 

[vitdoc]

I am a physician and I try to give the benefit of the doubt to other physicians. But in this case the cardiologist was truly incompetent. He and I lucked out that I didn't have an aortic dissection. In this case no harm no foul. Fortunately or unfortunately depending on your perspective the cardiologist developed some significant medical problems and had to retire.

 

[pellicle]

Hi

... Next morning my friendly cardiologist reviewing the echo at the hospital called me and said "You better find yourself a good surgeon, you have a 6.5 cm aortic aneurysm".

well done! (and you beat my high score of jut 5.6cm

I ended up having surgery a few months later and got my graft and clicker. Interestingly my wife and I had been planning a ski trip (pulling sleds) such as this

for Abisco the next winter ... had I not had my "checkup" on a "suspicion that my regurg was getting worse and I wanted verification" then it may have split on that trip (4 days) and put her in a difficult position up there in the arctic circle.

Also the surgeon in 2006 when I was 58 said "you don't want a tissue valve since you don't want your chest potential cracked a 4th time".

mine said pretty much the same thing to me at 48, I took that advice quite seriously.

So I guess all of us who have these problems are very lucky we live in a time that allows physicians to deal with these problems so effectively.

totally ... I don't recall the Church doing many successful interventions of the equal to aorticdissection prevention nor valve replacements, so while (and yes it irks me) people all want to say prayers about this stuff, myself I think the best thing you can do is do your best to prevent the slide back into flat earths, anti-vaxx and other superstitions.

 

[Warrick]

From this site run by a surgeon-
https://badaorta.com/double-trouble-bicuspid-aortic-valve-bav/
“At the genetic level, the gene that regulates how many leaflets develops in the aortic valve is associated with the genes that determine the quality of the elastic tissue of the ascending aorta.”
And
“However, since the aortic tissue in the ascending aorta is genetically abnormal and more fragile and prone to tearing, ripping or giving way, the cutoff for patients with BAV Syndrome is 4.5cm.
Many surgeons don’t follow these most recent guideline criteria.”

Im in the same boat as you jmo3, valve only replaced with a “mildly dialated” aorta at 4.1cm

 

[vitdoc]

I love Cardinal Bellarmine.

 

[Protimenow]

It's a great cartoon. I wish my browser allowed me to capture just the image, and not the rest of the page.

 

[doclewis]

Had AVR for stenosis and bicuspid valve with ascending aorta aneurysm repair 4 years ago. I have been seeing cardiologist every six months and having an echo. Everything good. Two years ago I was asked to have a follow up CT scan for the aneurysm repair saying it was routine. I hesitated because I have had so many pre-op, and my surgeon said I should never have to have any tests done in follow up for this. Any way, I went ahead and had it. It is reported as normal with only some normal changes from surgery. Just had my last visit with cardiologist and saw his PA. Everything good including echo. I looked on my portal and note said consider repeat routine CT on next visit. I was just wondering if others who have had aneurysm repair have periodic CT with contrast routinely. Can't find anything about this question on google or google scholar. I don't want to be a problem patient but I have probably had about ten of these and am concerned that all of that contrast and radiation couldn't be good for me.

 

[gregjohnsondsm]

I had the same procedure in 2015. I was getting an echo test every year. Then had 1 CT scan at year 3. Now my cardiologist says that every other year for the echo is fine. Start yearly echo tests at 2025. Valve is pericardial with dacron graft.

 

[doclewis]

I had Edwards bovine tissue valve. I have no idea what kind of implant. I have been having an echo every six months. I am told that everything is good with very good ejection fraction which has not decreased. Your cardiologist also did repeat ct at year 3. Hopefully this won't come up again next year. Thank you for your input. I don't know why I get an echo every six months instead of every year if everything is great. I guess I will ask him next visit though it is very easy and is done in his office where as the CT requires iv and difficult to get scheduled and has to be done at the hospital.

I had the same procedure in 2015. I was getting an echo test every year. Then had 1 CT scan at year 3. Now my cardiologist says that every other year for the echo is fine. Start yearly echo tests at 2025. Valve is pericardial with dacron graft.

I ha