1. < Aortic Aneurysms

Celiac Artery Aneurysm: Anyone else with same illness?

Posted by Jen @jurney01, Jul 23, 2016

Hello! I was recently diagnosis with a celiac artery aneurysm in June 2016. I underwent a embolization w/ coils procedure since the aneurysm had grown while in the hospital. I was trying to reach out to someone who suffered the same illness but have not been lucky. I would like to locate someone with my same illness. I would appreciate any help. Thank you

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

janet26 | @janet26 | Sep 27, 2019
In reply to @codonpatrick "The UCLA vascular surgeon said every year or two. My CAA was discovered in 2014 and..." + (show)
@codonpatrick

The UCLA vascular surgeon said every year or two. My CAA was discovered in 2014 and I had it checked again in 2016 and plan another CT scan in a couple of months. It was 1.4 cm in size both times. I wasn’t given any restrictions so it is life as usual. I do have some moderately severe GI issues about 6 months ago that lasted for a few mo this but much improved now. I was told that it was probably unrelated.

Jump to this post

I find it interesting that gut/digestive issues seem to be common among some of us with celiac aneurysms. Yet it doesn’t seem to be recognized as associated. I hope it will help the medical team to investigate that. I am now waiting two years fir my next MRI. Mine is 1.3
How do we know if it is growing?

REPLY
1 reply
codonpatrick | @codonpatrick | Sep 27, 2019
In reply to @janet26 "I find it interesting that gut/digestive issues seem to be common among some of us with..." + (show)
@janet26

I find it interesting that gut/digestive issues seem to be common among some of us with celiac aneurysms. Yet it doesn’t seem to be recognized as associated. I hope it will help the medical team to investigate that. I am now waiting two years fir my next MRI. Mine is 1.3
How do we know if it is growing?

Jump to this post

Yes! So many have reported digestive issues but linkage between GI issues and CAA doesn't seem to be widely accepted in the medical community. The rarity of this disorder is probably why the connection isn't made but this group alone provides empirical evidence worthy of investigation. I think CT scans is the only way to know if it is growing.

REPLY
janet26 | @janet26 | Sep 27, 2019

Thank you for reply and confirmation that this is a common occurrence. I am finding that the doctors seem reluctant to do to many CT scans , but I agree the imaging is more thorough than the MRI so I may in two years when I am due again, insist on the CT scan. Best wishes to all of us with this rare diagnosis.

REPLY
codonpatrick | @codonpatrick | Sep 27, 2019

Absolutely! This discussion group has been very helpful as it provides the collective thoughts and experiences of those of us who have such a rare disorder. Several have had their CAA repaired others continue to monitor. There are several recommendations of surgeons who have performed remedial procedures and others have discussed ways to deal with potentially related GI issues.

REPLY
perkman66 | @perkman66 | Sep 27, 2019
In reply to @kanaazpereira "Hi @perkman66, May I ask how often your doctor orders tests to monitor the aneurysm? Did..." + (show)
@kanaazpereira

Hi @perkman66,

May I ask how often your doctor orders tests to monitor the aneurysm? Did you have any symptoms?

Jump to this post

I was diagnosed several months ago. Another CT scan scheduled for Jan. I have no symptoms.

REPLY
andreas92103 | @andreas92103 | Sep 28, 2019
In reply to @kanaazpereira "Hello @andreas92103, That must have been so scary! I’m so glad you reached out to Mayo..." + (show)
@kanaazpereira

Hello @andreas92103,

That must have been so scary! I’m so glad you reached out to Mayo Clinic Connect – you've found a very supportive community – welcome! Here’s some information about aortic aneurysms:
https://www.mayoclinic.org/diseases-conditions/aortic-aneurysm/symptoms-causes/syc-20369472
I’d like to invite @annac3 to join this conversation; she recently posted about "Growth rate & genetics - Aortic Aneurysm, Ectasia” https://connect.mayoclinic.org/discussion/growth-rate-genetics/
May I ask what your options are, with regard to treatment, @andreas92103? I can imagine you are worried - what concerns you most about CAA?

Jump to this post

Thank ou for the gracious reply. The shock is beginning to wear off, primarily regarding how unusual this type of aneurysm is. I was also gobsmacked to learn that if a CAA ruptures, mortiality is pegged at 40%.

I spoke with my GP two days ago, and he informed me the CAA is actually 2.0cm, not 1.5cm, and I inferred their attitude is to take a wait-and-see approach and have a CAT scan every 9-12 months. I have very good insurance so there shouldn't be a problem with this schedule of investigation, which I'm grateful for. If it goes to 2.5-3.0cm, I'm going to advocate lilke h*ll to have surgery. I simply cannot live (no pun intended) with a 40% mortality rate.

Oh, and as a quick footnote, on top of the urgent broken blood vessel in the lung finding out about this CAA, I get to have a kidney biopsy next month because I'm in State 3 renal failure. Hurray for me! lol.

It's a lot to take in all in 4 weeks. Ugh.

Thank you for your best wishes.

Andreas.

REPLY
2 replies
65coupe | @65coupe | Sep 28, 2019
In reply to @andreas92103 "Thank ou for the gracious reply. The shock is beginning to wear off, primarily regarding how..." + (show)
@andreas92103

Thank ou for the gracious reply. The shock is beginning to wear off, primarily regarding how unusual this type of aneurysm is. I was also gobsmacked to learn that if a CAA ruptures, mortiality is pegged at 40%.

I spoke with my GP two days ago, and he informed me the CAA is actually 2.0cm, not 1.5cm, and I inferred their attitude is to take a wait-and-see approach and have a CAT scan every 9-12 months. I have very good insurance so there shouldn't be a problem with this schedule of investigation, which I'm grateful for. If it goes to 2.5-3.0cm, I'm going to advocate lilke h*ll to have surgery. I simply cannot live (no pun intended) with a 40% mortality rate.

Oh, and as a quick footnote, on top of the urgent broken blood vessel in the lung finding out about this CAA, I get to have a kidney biopsy next month because I'm in State 3 renal failure. Hurray for me! lol.

It's a lot to take in all in 4 weeks. Ugh.

Thank you for your best wishes.

Andreas.

Jump to this post

wow.. That certainly is a lot to take in.. So they took care of the broken blood vessel and that is one less thing you need to worry about.. As for you kidney, I had my left one taken out about 2 yrs ago and all is good, so while I hope they don't need to do that to you will make it thru this.. Sounds like you have good doctors and that is key.. hope it all works out ok..

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Sep 28, 2019
In reply to @andreas92103 "Thank ou for the gracious reply. The shock is beginning to wear off, primarily regarding how..." + (show)
@andreas92103

Thank ou for the gracious reply. The shock is beginning to wear off, primarily regarding how unusual this type of aneurysm is. I was also gobsmacked to learn that if a CAA ruptures, mortiality is pegged at 40%.

I spoke with my GP two days ago, and he informed me the CAA is actually 2.0cm, not 1.5cm, and I inferred their attitude is to take a wait-and-see approach and have a CAT scan every 9-12 months. I have very good insurance so there shouldn't be a problem with this schedule of investigation, which I'm grateful for. If it goes to 2.5-3.0cm, I'm going to advocate lilke h*ll to have surgery. I simply cannot live (no pun intended) with a 40% mortality rate.

Oh, and as a quick footnote, on top of the urgent broken blood vessel in the lung finding out about this CAA, I get to have a kidney biopsy next month because I'm in State 3 renal failure. Hurray for me! lol.

It's a lot to take in all in 4 weeks. Ugh.

Thank you for your best wishes.

Andreas.

Jump to this post

@andreas92103 - this is definitely a lot of new medical information to process! Overwhelming. Worry about one thing at a time- the CAA will be checked again, so the kidney biopsy is up next. Best wishes and please let us know what's happening. We are always here to listen.

REPLY
andreas92103 | @andreas92103 | Sep 30, 2019

Thanks, everyone, for the replies. It really does help ... I felt lost at sea there for a bit. 🙂

Andreas

REPLY
ken82 | @ken82 | Sep 30, 2019

I have an Asending Aortic Aneurysm coming out of the heart... every year I go in for a CT scan and they measure it.. I has remained the same for 15 yrs .. the Cardiologist said, maybe its been that size your whole life... but now we watch every 2 yrs... I am 82.. Good luck .. keep your blood pressure down.. Ken

REPLY
View MoreView Less
Please sign in or register to post a reply.