Ascending aortic aneurysm - questions and concerns

Help Support ValveReplacement.org:

jmo3

Member
Joined
Aug 11, 2016
Messages
11
Location
Brooklyn, NY
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)
 

leadville

Premium Level User
Joined
Aug 28, 2017
Messages
219
Location
Greater Manchester, England
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

Active member
Joined
Aug 6, 2019
Messages
29
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

Steely Resolve!
Joined
Apr 21, 2005
Messages
8,202
Location
Coastal Carolina
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.
 

mecretired

Well-known member
Joined
Apr 28, 2010
Messages
179
Location
Southeast Missouri, USA
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

Well-known member
Joined
Apr 16, 2017
Messages
48
Location
Southern Ca.
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

Well-known member
Joined
Apr 28, 2010
Messages
179
Location
Southeast Missouri, USA
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?
 

vitdoc

Well-known member
Joined
Apr 16, 2017
Messages
48
Location
Southern Ca.
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

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,282
Location
Queensland, OzTrayLeeYa
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.
 
Last edited by a moderator:

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
485
Location
New Zealand
From this site run by a surgeon-

“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
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,496
Location
California
It's a great cartoon. I wish my browser allowed me to capture just the image, and not the rest of the page.
 
Top