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Aortic Aneurysms - 4.5CM - Bicuspid Valve

Posted by Fighter @niravani, Sep 4 3:51pm

I am 50 year old male and diagnose with Aneurysms by accident through CT scan. 4.5CM was the measurement in December 2023. Since I met with Cardiologist and Surgeon and they ask to repeat CT scan and ECHO 6-month later.
I did re-test those and pretty much CT scan showed 4.6CM but a note that compare to the last one, its unchanged and stable.
My Dr. ask to do again in December and if its stable, repeat only ever year.
I went to Cleveland Clinic yesterday as I want to do my surgery there when it comes a time and they did the ECHO that showed my aneurysm of 5.3CM!!!! How is that possible? I just had my ECHO and CT scan in June (2months ago) and they both were 4.6CM and 4.3CM respectively and how Cleveland Clinic result is 5.3CM?

AORTA
The visualized aorta is dilated.
Measurements - Sinus: 3.5 cm.
Mid ascending aorta 4.7 cm.
Distal ascending aorta 5.3 cm.
Mid arch 2.9 cm.

This is scary and don't know what to do! Any advise? Any similar experience?

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marylou78 | @marylou78 | Sep 5 8:09am

Hi, I don't have any advice for you. Just wanted to offer support though. I'm a 45 yr old female. Just found out I have BAV and 4.2 ascending aorta. My GP recently heard a heart murmur and ordered Echo. (There was also some mild regurgitation in a few valves.) I'm just meeting with my cardio today to discuss results. Thanks for giving details on CT scan, this site seems very helpful and I'm sure someone with experience will get back to you. In the meantime deep breaths and try and hang in there

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1 reply
Fighter | @niravani | Sep 5 8:40am
In reply to @marylou78 "Hi, I don't have any advice for you. Just wanted to offer support though. I'm a..." + (show)
@marylou78

Hi, I don't have any advice for you. Just wanted to offer support though. I'm a 45 yr old female. Just found out I have BAV and 4.2 ascending aorta. My GP recently heard a heart murmur and ordered Echo. (There was also some mild regurgitation in a few valves.) I'm just meeting with my cardio today to discuss results. Thanks for giving details on CT scan, this site seems very helpful and I'm sure someone with experience will get back to you. In the meantime deep breaths and try and hang in there

Jump to this post

Thank you for your response. Good luck to you.
I am just concerned regarding my results as something doesn't make sense:
12/2023 - CT - 4.5CM
12/2023 - ECHO - 4.1CM
6/2023 - CT - 4.6CM
6/2023 - ECHO - 4.4CM
NOW 9/2023 - ECHO - 5.3CM (Growth of 0.9CM in just less than 3-months)?
I am wondering, if anyone has similar experience between different tests and readings and what to believe?

REPLY
1 reply
pamela78 | @pamela78 | Sep 5 8:58am
In reply to @niravani "Thank you for your response. Good luck to you. I am just concerned regarding my results..." + (show)
@niravani

Thank you for your response. Good luck to you.
I am just concerned regarding my results as something doesn't make sense:
12/2023 - CT - 4.5CM
12/2023 - ECHO - 4.1CM
6/2023 - CT - 4.6CM
6/2023 - ECHO - 4.4CM
NOW 9/2023 - ECHO - 5.3CM (Growth of 0.9CM in just less than 3-months)?
I am wondering, if anyone has similar experience between different tests and readings and what to believe?

Jump to this post

If I were you, I'd ask my cardiologist for an explanation and perhaps another round of tests. Also, I'd go with the highest reading. Better to assume the worst and not be caught off guard by a misleading measurement. Maybe a second opinion? Someone who knows what they're doing needs to explain this to you. Don't be shy about asking questions. And good luck and best wishes to you.

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1 reply
Fighter | @niravani | Sep 5 9:06am
In reply to @pamela78 "If I were you, I'd ask my cardiologist for an explanation and perhaps another round of..." + (show)
@pamela78

If I were you, I'd ask my cardiologist for an explanation and perhaps another round of tests. Also, I'd go with the highest reading. Better to assume the worst and not be caught off guard by a misleading measurement. Maybe a second opinion? Someone who knows what they're doing needs to explain this to you. Don't be shy about asking questions. And good luck and best wishes to you.

Jump to this post

Thank you.
If I go with just highest reading ignoring all 5 previous tests (2 ECHO + 2 CT + 1 TEE), all showing highest being 4.6. New ECHO showing 5.3 and especially within 3 months, doesn't make sense. Going to the highest reading, which is 5.3 will put in surgery now as I also have bicuspid valve and they would operate at 5.0CM.
I am not sure, if someone else is in the same boat and when it comes to test, is ECHO vs. CT scan results are comparable or CT is much of a gold standard?

REPLY
2 replies
pamela78 | @pamela78 | Sep 5 10:29am
In reply to @niravani "Thank you. If I go with just highest reading ignoring all 5 previous tests (2 ECHO..." + (show)
@niravani

Thank you.
If I go with just highest reading ignoring all 5 previous tests (2 ECHO + 2 CT + 1 TEE), all showing highest being 4.6. New ECHO showing 5.3 and especially within 3 months, doesn't make sense. Going to the highest reading, which is 5.3 will put in surgery now as I also have bicuspid valve and they would operate at 5.0CM.
I am not sure, if someone else is in the same boat and when it comes to test, is ECHO vs. CT scan results are comparable or CT is much of a gold standard?

Jump to this post

I think you need to get a medical opinion about this. I'm way out of my depth here but I wish you well. This is a scary business.

REPLY
bitsygirl | @bitsygirl | Sep 5 1:20pm

That does sounds like an unusual amount of growth. I believe the recommendation is for surgery when the growth is greater than .5cm in a year. (https://www.ahajournals.org/doi/epub/10.1161/CIR.0000000000001106) My understanding is that CT is more accurate than ECHO. There is a lot to know about measuring aortic aneurysms. I think only a professional can interpret the readings. FWIW, I don't think the readings are ever accurate to a tenth of a centimeter, I'm just not sure how far off they can be. (I have tried to find something that pins it down, but haven't been successful. I believe it is somewhere around .2 or .3 cm. ) There is also variation according to who performs the measurement. I gather they often try to have the same facility/person do the measurement each time.

I assume you went to Cleveland Clinic because of their reputation. If it were me, I think I'd just have to trust them to some degree and ask my physician there about the very unusual amount of growth in a way that makes me comfortable that they are aware of how different their readings are from the ones that were performed previously. Almost surely their process is optimized for accuracy and consistency (though no one is fallible). Did you send them your previous measurements? 5.3 is notable, did anyone get back in touch with you?

I got an unexpected spurt of growth though not anywhere as large as your measurements indicate. I find it hard to have so little understanding of, and control over, a process that is so important to your life (literally).

REPLY
1 reply
Fighter | @niravani | Sep 5 1:33pm
In reply to @bitsygirl "That does sounds like an unusual amount of growth. I believe the recommendation is for surgery..." + (show)
@bitsygirl

That does sounds like an unusual amount of growth. I believe the recommendation is for surgery when the growth is greater than .5cm in a year. (https://www.ahajournals.org/doi/epub/10.1161/CIR.0000000000001106) My understanding is that CT is more accurate than ECHO. There is a lot to know about measuring aortic aneurysms. I think only a professional can interpret the readings. FWIW, I don't think the readings are ever accurate to a tenth of a centimeter, I'm just not sure how far off they can be. (I have tried to find something that pins it down, but haven't been successful. I believe it is somewhere around .2 or .3 cm. ) There is also variation according to who performs the measurement. I gather they often try to have the same facility/person do the measurement each time.

I assume you went to Cleveland Clinic because of their reputation. If it were me, I think I'd just have to trust them to some degree and ask my physician there about the very unusual amount of growth in a way that makes me comfortable that they are aware of how different their readings are from the ones that were performed previously. Almost surely their process is optimized for accuracy and consistency (though no one is fallible). Did you send them your previous measurements? 5.3 is notable, did anyone get back in touch with you?

I got an unexpected spurt of growth though not anywhere as large as your measurements indicate. I find it hard to have so little understanding of, and control over, a process that is so important to your life (literally).

Jump to this post

Thank you for your detail response, I appreciate it.
I did spoke with the cardiologist at Cleveland clinic about the results. She was very confused herself and didn't have a good answer. She said that I need to follow up with my own cardiologist and have another CT scan done to compare this ECHO results, which I just have done CT scan in June showing 4.6CM (not 5.3).
My regular cardiologist said that ECHO is not reliable at all and especially where they measure Aorta size is very subjective and he would consider only CT as a benchmark and gold standard!
To peace myself, I have set-up another CT scan at the end of September to see what it shows.

REPLY
2 replies
ginnycake | @ginnycake | Sep 6 12:41am

Maybe you should have your original tests sent to Cleveland clinic for a second opinion and then also ask them to explain to you what this means and could it be growing really quickly or has someone misread the test or perhaps ask them when you might be needing preemptive surgery. Try to breathe deeply and excel deeply and the lowers your blood pressure which is really important to keep low saying prayers for your peace of mind and I think really the best thing to do is get all of your test to Cleveland clinic and have them talk to you about what the 5.3 they saw means . ❤️

REPLY
2 replies
ginnycake | @ginnycake | Sep 6 12:42am
In reply to @ginnycake "Maybe you should have your original tests sent to Cleveland clinic for a second opinion and..." + (show)
@ginnycake

Maybe you should have your original tests sent to Cleveland clinic for a second opinion and then also ask them to explain to you what this means and could it be growing really quickly or has someone misread the test or perhaps ask them when you might be needing preemptive surgery. Try to breathe deeply and excel deeply and the lowers your blood pressure which is really important to keep low saying prayers for your peace of mind and I think really the best thing to do is get all of your test to Cleveland clinic and have them talk to you about what the 5.3 they saw means . ❤️

Jump to this post

Sorry exhale not excel

REPLY
Fighter | @niravani | Sep 6 5:37am
In reply to @ginnycake "Maybe you should have your original tests sent to Cleveland clinic for a second opinion and..." + (show)
@ginnycake

Maybe you should have your original tests sent to Cleveland clinic for a second opinion and then also ask them to explain to you what this means and could it be growing really quickly or has someone misread the test or perhaps ask them when you might be needing preemptive surgery. Try to breathe deeply and excel deeply and the lowers your blood pressure which is really important to keep low saying prayers for your peace of mind and I think really the best thing to do is get all of your test to Cleveland clinic and have them talk to you about what the 5.3 they saw means . ❤️

Jump to this post

Thank you. I did gave them all the results from precious CT and ECHO and they advise it’s all stable.
Then they did their own ECHO and result showing 5.3CM!
They have no good answer. They don’t understand how this can grow 1CM in less than 3 months or it’s an error or anything.
My current cardiologist order me a new CT at the end of this month to confirm which I will do.

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