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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codonpatrick | @codonpatrick | Jan 31, 2019
In reply to @helenannmarie55 "When I was diagnosed 10 years ago The vascular doctor that was highly recommended told He..." + (show)
@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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codonpatrick | @codonpatrick | Jan 31, 2019
In reply to @janet26 "I have been told it has to reach 2 cm. Different doctors different ideas. I am..." + (show)
@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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1 reply
janet26 | @janet26 | Jan 31, 2019
In reply to @codonpatrick "I was diagnosed with a celiac aneurysm a couple of years ago. It is about 1.2..." + (show)
@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

REPLY
1 reply
onemind711 | @onemind711 | Jan 30, 2019
In reply to @dollylinda "Yes...non alcoholic type. I have had 4 years worth of mostly 24/7 pain. I just changed..." + (show)
@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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onemind711 | @onemind711 | Jan 30, 2019
In reply to @txkathy "Has anyone ever had an aneurysm rupture or ever heard of anyone that did?" + (show)
@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 | @dollylinda | Jan 30, 2019
In reply to @dollylinda "I have fatty liver also. Can get lightheaded but not tired. I have lots if right..." + (show)
@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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1 reply
randy1950 | @randy1950 | Jan 30, 2019
In reply to @txkathy "I live in North Central TX on the OK border by Wichita Falls. I am seeing..." + (show)
@txkathy

I live in North Central TX on the OK border by Wichita Falls. I am seeing the only Vascular Surgeon near by (Dr. Mohamad), but am considering going to UT Southwestern in Dallas. It's 3 hours away, but far more advanced than we are here.

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@txkathy Good luck. They say the Celiac aneurysm is not as common as an aortic. So finding someone in Dallas may be difficult as well. At least someone that has operated on one before. I have considered going to Mayo, but that is a long way.

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txkathy | @txkathy | Jan 30, 2019

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

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2 replies
txkathy | @txkathy | Jan 30, 2019
In reply to @randy1950 "Hi @txkathy . I'm in Texas also. My celiac aneurysm was 1.25 6 months ago. Getting..." + (show)
@randy1950

Hi @txkathy . I'm in Texas also. My celiac aneurysm was 1.25 6 months ago. Getting checked again in a few days. I was wondering who your vascular Dr was.?? I go to Vanguard in Rowlett. DR. Rose An.

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I live in North Central TX on the OK border by Wichita Falls. I am seeing the only Vascular Surgeon near by (Dr. Mohamad), but am considering going to UT Southwestern in Dallas. It's 3 hours away, but far more advanced than we are here.

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1 reply
codonpatrick | @codonpatrick | Jan 29, 2019
In reply to @txkathy "Thanks for the info. I see the vascular surgeon on Thursday. I'll post an update then." + (show)
@txkathy

Thanks for the info. I see the vascular surgeon on Thursday. I'll post an update then.

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I look forward to reading your update.

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