How long have you had your aneurysm?

[patientlywaiting]

Hello fellow travelers,
I came across a similarly titled thread from many years ago on this forum in my research and thought it might be helpful to revisit the topic here.

I (35yo male) was diagnosed last year with BAV and a 43mm ascending aortic aneurysm/dilitation. Interestingly, on the contrast cardiac MRI, the valve was discovered to be tricuspid with partially fused right and non coronary cusps. I have no stenosis and very mild regurgitation.

For everyone who has similar BAV aortopathy, has your aneurysm remained stable? There is a lot of conflicting information out there re growth rates, and I thought it would be helpful to poll some of the lovely folks here to see how their time in the waiting room has gone.

Looking forward to the discussion here and thanks in advance for your answers.

Best,
Colin

 

[Lucker]

My aortic root is at 40mm, stayed like that for 3 years that I am watching it, and I am 39 YO with BAV. The growth speed really differs a lot between people, some never develop threatening aneurism throughout their whole life, despite having a large aorta and BAV. The genetics and other factors behind this are too complex to establish a firm rule as of today.

 

[Survived03]

PatientlyWaiting, as Lucker mentions, there are a lot of factors that go into diagnosing and predicting an aneurysm. Maybe you will find this presentation useful. Good luck.

Ascending… | The American Association for Thoracic Surgery | AATS

 

[Raoul]

I was 24 years when they found out. It was 47mm, 22 years later it was 49mm. To bad my valve.was the biggest problem and the reason i needed surgery....

 

[patientlywaiting]

Wow, Raoul! That is quite a long time to stay stable. I'm guessing your blood pressure is very well controlled?

Appreciate all the answers and feedback so far!

 

[Raoul]

Blood pressure was in the range of 140/70.
Now with the new valve its in the range of 130/80. It was because of the calvication of the valve.that i needed the surgery.

 

[Croooser]

Agree completely that it is hard to draw conclusions based on the experience of others. Also difficult to see a gradual, consistent trend in aneurysm test results. Having said that, here is my history:

2003 - First diagnosed at 4.7 - age 53
2003 -2016 - Varied from 4.7 to 4.8 - Actually would go up and down a little based on testing variances
2017 - 2021 - 4.9 to 5.0
2021 - Surgery at 5.0 along with AVA of .9
2022 - one year post surgery 3.3 (echo)

Will have another echo at year end. My cardio is happy to order an echo once a year which I prefer for peace of mind.

My experience indicates that it is possible to reach the "edge of the cliff" and stay there for quite a while. However, two different cardios told me that there is little chance that surgery will not be required unless something else causes death first.

YMMV + HTH

 

[RobThatsMe]

My first OHS for an Ascending Aortic Dissection was March of 2000 with a St. Jude Mechanical Valve with Graft.
My second was in 2010 to replace the St. Jude's Valve due to Pannus growth around the valve preventing it from operating properly. They replaced it with an Onyx Aortic Mechanical Valve, which is supposed to be designed to deflect Pannus growth.
It is now 2023 and I am stable, no new issues, but also get checked at CCF annually for any new surprises.
I also had another surgery in 2015 to further support my aortic dissection. My aorta originally was torn from my aortic valve down past the ileac to my left knee area.
Hope this helps with your question. As the usual answer from the doctors seems to be that aneurysms and dissections after repair can remain stable for years, until they don't.

 

[patientlywaiting]

Thank you to everyone so far who's shared their experiences and provided insight. It's fascinating to see how our bodies respond differently to what, on the surface, appears to be the "same" disease with such wildly different clinical presentations. Sounds like the best thing to do is keep on keepin' on and take it one scan at a time.

Rob -- your story is very harrowing but I'm glad to see you on the other side of it. Wow!

 

[Varago33]

It will be what it will be. Yea I know that sounds like BS At 73 I have lived with for both some time now, the valve** and aneurysm. My only advice is to NOT worry about it, take yours pills and live life. When it happens it happens. DONT worry about it that only speeds it up.

** Saint Jude

 

[pellicle]

My only advice is to NOT worry about it, take yours pills and live life. When it happens it happens. DONT worry about it that only speeds it up.

so good its worth repeating.

Worrying about it only robs you of all the enjoyable times you could have had between diagnosis and surgery.

Some advice from an old Roman Emperor

Best Wishes

 

[Critter]

Well I also have an aneurysm of 4.3 cm in ascending aorta that is still present after surgery since my root was not taken during surgery. I was told that I would have no clue with chest pain, etc. if it were to rupture. I started reading some Marfan studies about aortic artery dissection and my cardiologist and I decided to go with losartan which has shown evidence of decreasing rupture by inhibiting some type of connective tissue enzyme that would eventually cause weakening and rupture of aneurysm. My root diameter has remained the same for the last 2.5 years.

 

[patientlywaiting]

Thanks everyone again for the replies here I am living my life, surfing, running, and all things in between, and have accepted whatever outcome. I have my yearly contrast MRI on Thursday so I'll have another data point to glean insights from and take it from there.

 

[pellicle]

Hi

sounds like you're exactly doing the right stuff.

I have my yearly contrast MRI on Thursday so I'll have another data point to glean insights from and take it from there.

excellent. Now a point about growth of aneurysms, when they start to grow they'll start to increase the frequence of contrast scans because typically they become non-linear as they progress.

hopefully this graph I've munged up explains what this means. Let me know if this picture wasn't the thousand words I'd hope it to be

Best Wishes

 

[Gordo60]

First diagnosed at age 49 with aortic root diameter of 43mm. Two years later was 45mm. For the last 10 years it has roughly been in the 45 - 47mm range. My Aneurysm / marfan cardiologist thinks that any minor change during the longer latter period could simply be due to the aging process.

I‘m 63 now and just don’t really think about it any more except when my annual check up comes around. I do try to be sensible in avoiding straining when lifting etc but otherwise live pretty normally.

 

[Varago33]

I will not let it control my life, but at 73 not to sure how long that will be I am a VERY HAPPY man with a SUPER D DUPER WIFE, 2 awesome daughters with great husband's and two AWESOME grand kids ))

Side note: only one thing has changed in my life and that is my WIFE will will not ride in the car with me driving I am sure every one here can guess ))

 

[Varago33]

Hello fellow travelers,
I came across a similarly titled thread from many years ago on this forum in my research and thought it might be helpful to revisit the topic here.

I (35yo male) was diagnosed last year with BAV and a 43mm ascending aortic aneurysm/dilitation. Interestingly, on the contrast cardiac MRI, the valve was discovered to be tricuspid with partially fused right and non coronary cusps. I have no stenosis and very mild regurgitation.

For everyone who has similar BAV aortopathy, has your aneurysm remained stable? There is a lot of conflicting information out there re growth rates, and I thought it would be helpful to poll some of the lovely folks here to see how their time in the waiting room has gone.

Looking forward to the discussion here and thanks in advance for your answers.

Best,
Colin

My advice is DO NOT take advice from anyone on line PERIOD

Now after saying that I will tell you my experience. I have had a ST Jude aortic valve for the past 15 years and yes I have the Aneurysm and DONT worry about it, what will be will be. My experience with the medical profession is at =>70 they wont crack your chest. There is a shining light for me in that my last check up there was NO increase in size over the past year. For what its worth I am now 73

One more thing to think about is the valve type, I went with mechanical valve for one very simple reason, it should out last me, the tissue valves dont
The pain I had after the insertion was the worst I have every had by a very large amount. There were times I was sitting on the couch crying from the pain I was in even with the pain meds I was on.

Dave

PS I never ask about the size