Celiac Artery Aneurysm

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

My father was sick all of his life with stomach issues. He never had a diagnosis and he had a rupture and died a week later. My father suffered so much.

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@helenannmarie55

I have MAL and gasterparesis no one will do a thing. No treatment just waiting until it ruptures but maybe so late. I have been to many doctors no treatment is given. I gave up gonna let my body do what it needs to do and if it is an emergency then someone will do something if it isn’t to late. I am tired of paying all these medical bills and higher insurance premiums with being dismissed. I am sorry for sounding negative that is just my truth.

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So sorry to hear this. My prayers are with you!

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I think the problem is celiac aneurysm is so rare. I explained thr pain I have ans the dr told me theyre not supposed to hurt.. I then said .. Really? I didnt get the owners manual didnt know you had one.. Like seriously so few have popped up since 1745 no one honestly knows anything.. I get compared to having a AAA so much and there so different. And yes all they want to do is wait. Go home dont lift over 20 lbs. I now work like 3 days a week for 3 hrs a day . I get pain all the time and am tired a lot. Ive read about someone in my same case. No lifting and wait wait wait for 4 years..like really? Mine is 3 tenths of a cm off of when they recommend the operation…. 3 tenths .. The condition and how your treated is sickening

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@bobrush

I think the problem is celiac aneurysm is so rare. I explained thr pain I have ans the dr told me theyre not supposed to hurt.. I then said .. Really? I didnt get the owners manual didnt know you had one.. Like seriously so few have popped up since 1745 no one honestly knows anything.. I get compared to having a AAA so much and there so different. And yes all they want to do is wait. Go home dont lift over 20 lbs. I now work like 3 days a week for 3 hrs a day . I get pain all the time and am tired a lot. Ive read about someone in my same case. No lifting and wait wait wait for 4 years..like really? Mine is 3 tenths of a cm off of when they recommend the operation…. 3 tenths .. The condition and how your treated is sickening

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That is an unpleasant way to live and I agree that the rarity of the condition contributes to medical intervention inconsistencies. Sit , wait and monitor isn't very satisfying. I had never heard that lifting weight is an issue. Is your pain under your ribs? Are you also having persistent digestive issues? 3 tenths of a cm seems minute and I wonder why Doctors would suggest waiting in view of the difficulty you are having.

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@randy1950

@txkathy Is it possible you meant 1.1 mm? 11 mm is kinda large……

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Yep, 11 mm, not cm, which is much larger. When I asked the vascular surgeon if he had ever done the operation, and he said "no",, but I can't find you someone here who probably has. Not risking that. If the CT in 6 months shows that it is larger, I have a connection at UT Southwestern in Dallas, & they have about 12 vascular surgeons. I won't trust any dr here in Wichita Falls for anything! Our doctors are pathetic.I do keep having pain under my bottom left ri, but the dr said that's not where the aneurysm is located. Don't even know if he knows what he's talking about.Sometimes I wish I lived in a larger city. Dallas is 3 hrs away & OK City is too.

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@txkathy

Yep, 11 mm, not cm, which is much larger. When I asked the vascular surgeon if he had ever done the operation, and he said "no",, but I can't find you someone here who probably has. Not risking that. If the CT in 6 months shows that it is larger, I have a connection at UT Southwestern in Dallas, & they have about 12 vascular surgeons. I won't trust any dr here in Wichita Falls for anything! Our doctors are pathetic.I do keep having pain under my bottom left ri, but the dr said that's not where the aneurysm is located. Don't even know if he knows what he's talking about.Sometimes I wish I lived in a larger city. Dallas is 3 hrs away & OK City is too.

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Many people have that pain under the left rib I don’t understand what it is. I don’t tell doctors about it anymore because they make me feel like it is in my head.

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@helenannmarie55

Many people have that pain under the left rib I don’t understand what it is. I don’t tell doctors about it anymore because they make me feel like it is in my head.

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My pain is under right ribs. They say the same thing about it… Not related. I don't believe them.

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@txkathy

Yep, 11 mm, not cm, which is much larger. When I asked the vascular surgeon if he had ever done the operation, and he said "no",, but I can't find you someone here who probably has. Not risking that. If the CT in 6 months shows that it is larger, I have a connection at UT Southwestern in Dallas, & they have about 12 vascular surgeons. I won't trust any dr here in Wichita Falls for anything! Our doctors are pathetic.I do keep having pain under my bottom left ri, but the dr said that's not where the aneurysm is located. Don't even know if he knows what he's talking about.Sometimes I wish I lived in a larger city. Dallas is 3 hrs away & OK City is too.

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It would be good to find vascular surgeons who have actually performed the operation. I live in the L.A. area and have consulted a surgeon at UCLA but he has never done one. During my first visit about 4 years ago he told me to monitor it with CT scans and we could consider a coil stent or a more invasive surgery if and when it grows to 1.4cm. I haven't met with him since then but when I had a follow up CT he read the results and emailed me. He said that it wasn't growing and I should continue to monitor but he didn't believe that I would ever need repair. I haven't received any advice about things I should be doing prophetically and was never told to avoid lifting weight of any type.

Perhaps collectively we can all develop a consistent strategy of how and what to do while waiting as well as symptoms we may experience while waiting.

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My pain in under near the bottom of my left rib and between. Like a pulling pain feeling.. Also mine is above 1.4 last ct scan said 2 cm …. Tuesday I'm probably going to just walk in the er of a heart hospital I found in my city… Its pathetic how they expect us to live and deal with this issue

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@dollylinda

My pain is under right ribs. They say the same thing about it… Not related. I don't believe them.

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Right rib for me, and they said it might very well be it. Also tbe liver is there and it could be tje liver. If i lay on my right side i feel it often.

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@codonpatrick

It would be good to find vascular surgeons who have actually performed the operation. I live in the L.A. area and have consulted a surgeon at UCLA but he has never done one. During my first visit about 4 years ago he told me to monitor it with CT scans and we could consider a coil stent or a more invasive surgery if and when it grows to 1.4cm. I haven't met with him since then but when I had a follow up CT he read the results and emailed me. He said that it wasn't growing and I should continue to monitor but he didn't believe that I would ever need repair. I haven't received any advice about things I should be doing prophetically and was never told to avoid lifting weight of any type.

Perhaps collectively we can all develop a consistent strategy of how and what to do while waiting as well as symptoms we may experience while waiting.

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The vascular team at mayo told me every two years for CTs, mine hasnt grown at all. I also have blood clots on the back side which is actually a good thing. Its been 5 years and mine hasnt changed at all.

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@onemind711

Right rib for me, and they said it might very well be it. Also tbe liver is there and it could be tje liver. If i lay on my right side i feel it often.

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I was told the liver doesn't cause pain. I've had 2CT scans and all was fine with internal organs.
Did your vascular surgeon say it would hurt in the upper right under ribs? Asking as I am going to discuss this with mine at next appointment. Thank you

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@bobrush

My pain in under near the bottom of my left rib and between. Like a pulling pain feeling.. Also mine is above 1.4 last ct scan said 2 cm …. Tuesday I'm probably going to just walk in the er of a heart hospital I found in my city… Its pathetic how they expect us to live and deal with this issue

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Bob… I’ve resigned myself to live for the day and get the most out of it. I was very freaked out when I found out. It's been about 1-1/2 years now. After 3 months or so I just simple let go of the fear knowing that if it ruptures, which I have no control over, I won't die a long slow death which to me would be horrid.
I hope you find some relief. Maybe you could go to Msyo and see their team. The surgery I hear is very invasive and carries high risk… That's why they don't want to do if… Supposedly.
I agree with those that say if it's so rare why are there so many talking here on this site? I think lots of people go undiagnosed.
Has anyone been told what would have caused it? I wasn't. In one CT scan it wasn't even found and one year later, I had another CT for this right sided pain and that's when it was found.
Also since then I has a thoracic MRI of back and it wasn't indicated on those reports either. Seems like it would have since the Celaic artery is closer to our spine than chest ( per my doctor)

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@codonpatrick

It would be good to find vascular surgeons who have actually performed the operation. I live in the L.A. area and have consulted a surgeon at UCLA but he has never done one. During my first visit about 4 years ago he told me to monitor it with CT scans and we could consider a coil stent or a more invasive surgery if and when it grows to 1.4cm. I haven't met with him since then but when I had a follow up CT he read the results and emailed me. He said that it wasn't growing and I should continue to monitor but he didn't believe that I would ever need repair. I haven't received any advice about things I should be doing prophetically and was never told to avoid lifting weight of any type.

Perhaps collectively we can all develop a consistent strategy of how and what to do while waiting as well as symptoms we may experience while waiting.

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That's very interesting. Thanks for the info. I wasn't told about lifting weight either. In fact they simply said just live your life like normal. Did they advice you to take any type of precaution? Mine is 1.3 and my vascular surgeon said they wouldn't do anything unless it was 2cc.
Also, I will bring that up.

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@dollylinda

I was told the liver doesn't cause pain. I've had 2CT scans and all was fine with internal organs.
Did your vascular surgeon say it would hurt in the upper right under ribs? Asking as I am going to discuss this with mine at next appointment. Thank you

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No, he only said the pain might be the aneurysm. I have a fatty liver, thats why I thought it might be the culprit. But its definately a pain i experience often. Its not bad, more dull achy. It is a very odd unique pain. Its not debilitating just odd.

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