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

@dollylinda

I have fatty liver also. Can get lightheaded but not tired. I have lots if right rib pain, do you?

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Yes…non alcoholic type.
I have had 4 years worth of mostly 24/7 pain. I just changed to Keto diet and pain has subsided after just 3 days. I was so uncomfortable just driving.
Did anyone tell you your pain was from fatty liver? I have had an ultrasound that said fatty liver but 2 different CT scans didn't detect it. My doctor says the liver doesn't hurt but I'm really not trusting the advice I've been given. He also said if fatty liver didn't show up on CT than I don't have it. And I'm the proactive type of person. Ridiculous! So… I’m confused.
I don't get tired and occasionally I’ll get lightheaded. Had tons of tests, heart, gallbladder, pancreas, Mri’s of thoracic and lumbar, CT of abdomen and pelvis, ultrasound tons of blood workup.

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@txkathy

Has anyone ever had an aneurysm rupture or ever heard of anyone that did?

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Not I, and that is thr fearful part. They dont have data. But it doest sound to optimistic.

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@dollylinda

Yes…non alcoholic type.
I have had 4 years worth of mostly 24/7 pain. I just changed to Keto diet and pain has subsided after just 3 days. I was so uncomfortable just driving.
Did anyone tell you your pain was from fatty liver? I have had an ultrasound that said fatty liver but 2 different CT scans didn't detect it. My doctor says the liver doesn't hurt but I'm really not trusting the advice I've been given. He also said if fatty liver didn't show up on CT than I don't have it. And I'm the proactive type of person. Ridiculous! So… I’m confused.
I don't get tired and occasionally I’ll get lightheaded. Had tons of tests, heart, gallbladder, pancreas, Mri’s of thoracic and lumbar, CT of abdomen and pelvis, ultrasound tons of blood workup.

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Ive had a CT, and my bloodwork shows elevated numbers for liver. I dont know what hurts but its on my right side under the last lower rib.

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@codonpatrick

I was diagnosed with a celiac aneurysm a couple of years ago. It is about 1.2 cm in size so I am having it monitored. I have been told that surgery is an option if and when it grows to 1.4cm. From what I have been told by doctors and reading about the condition there isn't anything to do but have surgery when the aneurysm reaches a certain size. I welcome comments and thoughts from anyone else with this condition.

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I have been told it has to reach 2 cm. Different doctors different ideas. I am wondering if it can stay the same size for many years

If so and surgery isn’t done are we at risk of rupture? Many questions. It is good to hear input

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@janet26

I have been told it has to reach 2 cm. Different doctors different ideas. I am wondering if it can stay the same size for many years

If so and surgery isn’t done are we at risk of rupture? Many questions. It is good to hear input

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Janet

I have spoken to several doctors and have read an enormous amount about our rare condition. My take away is that we are at risk of rupture which could be catastrophic. However , likelihood of rupture of a small anureysm is extremely low. I have heard and read that repair is not recommended until it reaches 1.4 cm or more.

It is uneasy having the condition so I am having checked periodically.

Dennis

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@helenannmarie55

When I was diagnosed 10 years ago The vascular doctor that was highly recommended told He it is a very expensive surgery and it would be a 50 50 chance it would work. I talked to a friend that was a nurse in our hospital with vascular for many years. I was referred to the Chief Of staff that was in vascular for over 30 years. He told me if you were my wife I would say don’t touch it leave it alone. I belong to another Facebook group for MALS and it seems surgeries haven’t been working and also found out that people have 3-4 surgeries. There are some people that are glad they had surgery. I would highly recommend to join that Facebook group that is where I learned the most. Iwasn’t Diagnosed until I was 50 maybe if I would of been diagnosed at an earlier age I would of tried surgery. I would caution you to really educate yourself and choose a surgeon wisely or things could become worse. I hope you find the answers you need. God bless you and your family!

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I was unable to find the Facebook group you mentioned.

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I saw the vascular surgeon yesterday, & he said my aneurysm is only 11 mm in size, as it was on a previous CT in Sept. Wants to follow up with another CT in 6 months. If it gets any larger, he wants to do a surgical resection or a stent.

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@txkathy

I saw the vascular surgeon yesterday, & he said my aneurysm is only 11 mm in size, as it was on a previous CT in Sept. Wants to follow up with another CT in 6 months. If it gets any larger, he wants to do a surgical resection or a stent.

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

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@codonpatrick

Janet

I have spoken to several doctors and have read an enormous amount about our rare condition. My take away is that we are at risk of rupture which could be catastrophic. However , likelihood of rupture of a small anureysm is extremely low. I have heard and read that repair is not recommended until it reaches 1.4 cm or more.

It is uneasy having the condition so I am having checked periodically.

Dennis

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Thank you for reply. My next MRI Is in April. The story will continue. I went from 1.2 to 1.3 if it has grown more I may have to be a squeaky wheel

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@janet26

Thank you for reply. My next MRI Is in April. The story will continue. I went from 1.2 to 1.3 if it has grown more I may have to be a squeaky wheel

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You and I are just about in the same place as our aneurysms are virtually the same size. I think being a squeaky wheel is the right strategy for both of us. Are you happy with your vascular surgeon? How often do you have an MRI ? I have had three MRI's about every year to 18 months since it was diagnosed. Have you had any notable symptoms? Most celiac aneurysms are apparently asymptomatic.

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@txkathy

I saw the vascular surgeon yesterday, & he said my aneurysm is only 11 mm in size, as it was on a previous CT in Sept. Wants to follow up with another CT in 6 months. If it gets any larger, he wants to do a surgical resection or a stent.

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i.1 cm is pretty small 11 cm seems quite large. Have you had a second opinion ? My vascular surgeon gave similar advice but less frequent MRI's.

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@janet26

Thank you for reply. My next MRI Is in April. The story will continue. I went from 1.2 to 1.3 if it has grown more I may have to be a squeaky wheel

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Per my vascular surgeon that's more than likely just due to the person taking the measurement. I had the very same thing as you..exact same size.

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@dollylinda

Per my vascular surgeon that's more than likely just due to the person taking the measurement. I had the very same thing as you..exact same size.

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Have you had it repaired… or planning to?

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@codonpatrick

Have you had it repaired… or planning to?

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I am being told they prefer not to repair until it reaches 2 cm

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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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