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

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65coupe | @65coupe | Nov 15, 2019
In reply to @cheftam "I was diagnosed last year with A Celiac aneurism I have no one here to go..." + (show)
@cheftam

I was diagnosed last year with A Celiac aneurism I have no one here to go till for the situation I didn't know if it was serious or not maybe somebody can tell me a little more about it I been Vomiting losing weight all the above

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I'm sorry this has happened to you, I also have a CA @1.6 but show not symptons at this point.. Is it possible for you to go out of state for a dr.. maybe a relative or friend somewhere..

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 15, 2019
In reply to @cheftam "I live in Alaska sorry about that" + (show)
@cheftam

I live in Alaska sorry about that

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@ cheftam - I understand that living in Alaska with a rare medical condition must be very challenging. What happens if someone needs to see a “ super” specialist? Can a doctor in Alaska consult with an expert elsewhere via telemedicine? They can’t just leave you like this!

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codonpatrick | @codonpatrick | Nov 15, 2019
In reply to @dougf "I've been living with mine for several years, It's pretty small 1.2 cm and I have..." + (show)
@dougf

I've been living with mine for several years, It's pretty small 1.2 cm and I have no symptoms. They have me do a CT scan every year to see if it is growing but other than that it's wait and see. Many of us are in that "to small" to fix it category. Many other like yourself have associated symptoms that in my opinion are a good enough reason to do something to fix it. It's frustrating for sure. I think finding the right doctor is key but that is difficult when these are such rare occurrences. Good luck and you are not alone.

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Your situation is similar to mine ( even the aneurysm size ) and typical for members of the group. I am just beginning to experience some digestive issues nothing that isn't manageable. Finding a vascular surgeon familiar with the diagnosis to monitor and repair if necessary is an issue for most of us.

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dougf | @dougf | Nov 15, 2019

I've been living with mine for several years, It's pretty small 1.2 cm and I have no symptoms. They have me do a CT scan every year to see if it is growing but other than that it's wait and see. Many of us are in that "to small" to fix it category. Many other like yourself have associated symptoms that in my opinion are a good enough reason to do something to fix it. It's frustrating for sure. I think finding the right doctor is key but that is difficult when these are such rare occurrences. Good luck and you are not alone.

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1 reply
cheftam | @cheftam | Nov 15, 2019

I live in Alaska sorry about that

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1 reply
cheftam | @cheftam | Nov 15, 2019

I was diagnosed last year with A Celiac aneurism I have no one here to go till for the situation I didn't know if it was serious or not maybe somebody can tell me a little more about it I been Vomiting losing weight all the above

REPLY
2 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 16, 2019
In reply to @itsallaboutmyki "My dad was diagnosed with a celiac artery aneurysm a couple years ago. His doctor wasn’t..." + (show)
@itsallaboutmyki

My dad was diagnosed with a celiac artery aneurysm a couple years ago. His doctor wasn’t worried about it until a couple years ago, when he started to become sick after eating or drinking anything. If he even drinks water he gets pain from his stomach to his back and up under his ribs. He has lost over 40lbs in the last 2 months. He doesn’t sleep. Has anyone experienced this? It’s very scary for me to watch him in pain. He does see a vascular surgeon today. Finally

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Hello @itsallaboutmyki,

How is your dad doing? Are you comfortable sharing what you learned from the vascular surgeon?

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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

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andreas92103 | @andreas92103 | Sep 30, 2019

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

Andreas

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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.

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@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.

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