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

@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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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 live in Alaska sorry about that

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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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@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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@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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@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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I was in the ER today Due to adrenal crisis and ended up with a CT scan looking for kidney stones
The CT scan was never discussed upon My release and I didn’t even think about ask
After leaving and on my way home I read the CT report and it noted mildly aneurysmal celiac artery
My daughter was furious this was never discussed and called the ER they said it was seen on a previous ct scan and it hasn’t changed and they assumed I knew
Ummm nope never been told any of that and I went back to my last ct and it wasn’t noted there either
I would love to know how yours was found and I might if I keep reading the comments but would love more feed back

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@stacy475

I was in the ER today Due to adrenal crisis and ended up with a CT scan looking for kidney stones
The CT scan was never discussed upon My release and I didn’t even think about ask
After leaving and on my way home I read the CT report and it noted mildly aneurysmal celiac artery
My daughter was furious this was never discussed and called the ER they said it was seen on a previous ct scan and it hasn’t changed and they assumed I knew
Ummm nope never been told any of that and I went back to my last ct and it wasn’t noted there either
I would love to know how yours was found and I might if I keep reading the comments but would love more feed back

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Hi..wow! Your story is almost the same as mine. I went to the ER in 06/17 for severe upper middle back pain. Had an abdominal CT scan. Was told I had gallstones. Had gallbladder removed 10 days later. Then on 07/24/17 the same terrible back pain hit me again. Went to the ER, given another abdominal CT scan (mind you both times I was complaining of severe pain between my shoulder blades), ER doctor received those results and I immediately found myself having a CTA (CT angiogram). He came back in and said, "I have very bad news..your aorta is dissecting itself and did you know you also have a celiac artery aneurysm?" He said the celiac artery aneurysm was noted on the prior CT from June. No one ever informed me. However, if they would have done the CTA back in June they also would have noticed the beginnings of my TAA. I had emergency TEVAR to repair my aorta. No one was concerned much about the celiac artery aneurysm. I lost my health insurance until January so I just try my best to stay well. Good luck to you!

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@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 am very sorry to hear you are going through this. My celiac aneurysm is 1.5 cm and it was discovered 2 years ago after I had a splenic infarction. The clot originated from the celiac aneurism. I am told this is unusual to have an infarction from a CA this size. I had been losing weight, nauseated, had pain in my back and stomach area and felt severe generalized malaise. I have always been in good health. Now they follow me once year and I am fortunate to be near excellent medical care. Now I don't have any symptoms (knock on wood) and I am hoping the size doesn't vary. This group has been very helpful to me to know I am not alone out there. This can be scary and lonely. I hope you find a good doctor. I go to a vascular surgeon and have an excellent internist that hears me. It is important to find someone who takes your symptoms seriously. Please keep us posted on how you are doing.

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@stacy475

I was in the ER today Due to adrenal crisis and ended up with a CT scan looking for kidney stones
The CT scan was never discussed upon My release and I didn’t even think about ask
After leaving and on my way home I read the CT report and it noted mildly aneurysmal celiac artery
My daughter was furious this was never discussed and called the ER they said it was seen on a previous ct scan and it hasn’t changed and they assumed I knew
Ummm nope never been told any of that and I went back to my last ct and it wasn’t noted there either
I would love to know how yours was found and I might if I keep reading the comments but would love more feed back

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My Celiac Aneurysm was found the same way. A CT scan looking for kidney stones uncovered the CA. I wasn't informed about it but became concerned while reading the results of the scan. I contacted my doctor who referred me to a vascular surgeon. I discussed it with him and he suggested that I monitor it periodically to determine if it increases in size. I am in a wait and see mode like most of us.

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@stacy475

I was in the ER today Due to adrenal crisis and ended up with a CT scan looking for kidney stones
The CT scan was never discussed upon My release and I didn’t even think about ask
After leaving and on my way home I read the CT report and it noted mildly aneurysmal celiac artery
My daughter was furious this was never discussed and called the ER they said it was seen on a previous ct scan and it hasn’t changed and they assumed I knew
Ummm nope never been told any of that and I went back to my last ct and it wasn’t noted there either
I would love to know how yours was found and I might if I keep reading the comments but would love more feed back

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Thank you for your replies I didn't know there was a lot of people like myself I found out about mine from ACT scan another doctor took but never told me sent me to another doctor that was a surgeon and found out from him after he read that report he called me and said I have aneurisms on my aorta never knew for 6 months and number days doing anything but keep an eye On it I don't know what to do for Certain things in Alaska

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About two weeks ago, after two days of worsening pain….starting with what felt like indigestion in my upper left abdomen with increasing low then full back pain….and an inability to find any position that was comfortable, or be able to eat, I went to an Urgent Care where they did all the tests, plus a CT, all of which were normal. They then suggested I head to our very busy ER. They, too, did all the tests, plus a CT. An attentive radiologist saw a barely visible anomaly in my celiac artery. They did another CT to confirm, told me I was going into surgery as soon as the surgeon, an Interventional Radiologist, and his team arrived at the hospital. Barely had time to call family, arrange for care for my dogs. The CT scan showed disruption of the celiac arterial trunk from dissection with intramural hematoma and development of pseudoaneurysm. The final “Impression” after the closed surgery was: Initial visceral angiography confirming an irregular dissection of the celiac artery and development of prominent, irregular pseudoaneurysm from the false lumen. Due to the irregular narrowed lumen, primary repair with stent graft placement was not possible. Alternative, successful coil embolization of the celiac artery trunk and bifurcation and left gastric artery to prevent further pseudoaneurysm growth and mitigate risk of rupture and hemorrhage.

So I got lucky. None of this showed up two months ago on a CT I have every year to monitor an aneurysm in my ascending aorta. I don’t know what caused it or what any of this means for the future. The surgeon had seen this before and was well qualified to perform this procedure. My experienced PCP had never seen this before. I live in central Oregon, in Bend, where I would not have thought my care could be so good. The surgeon was Dana Mann, MD.

Now I need to find out how to take care of myself. Diet, exercise, future monitoring. Wish my energy would come back. Maybe with time.
I was incredibly lucky and am so grateful to the fine people working at our one hospital, who cared enough to save my life.
Thank you for letting me share this journey with you. So glad I found you all.

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@marionap

About two weeks ago, after two days of worsening pain….starting with what felt like indigestion in my upper left abdomen with increasing low then full back pain….and an inability to find any position that was comfortable, or be able to eat, I went to an Urgent Care where they did all the tests, plus a CT, all of which were normal. They then suggested I head to our very busy ER. They, too, did all the tests, plus a CT. An attentive radiologist saw a barely visible anomaly in my celiac artery. They did another CT to confirm, told me I was going into surgery as soon as the surgeon, an Interventional Radiologist, and his team arrived at the hospital. Barely had time to call family, arrange for care for my dogs. The CT scan showed disruption of the celiac arterial trunk from dissection with intramural hematoma and development of pseudoaneurysm. The final “Impression” after the closed surgery was: Initial visceral angiography confirming an irregular dissection of the celiac artery and development of prominent, irregular pseudoaneurysm from the false lumen. Due to the irregular narrowed lumen, primary repair with stent graft placement was not possible. Alternative, successful coil embolization of the celiac artery trunk and bifurcation and left gastric artery to prevent further pseudoaneurysm growth and mitigate risk of rupture and hemorrhage.

So I got lucky. None of this showed up two months ago on a CT I have every year to monitor an aneurysm in my ascending aorta. I don’t know what caused it or what any of this means for the future. The surgeon had seen this before and was well qualified to perform this procedure. My experienced PCP had never seen this before. I live in central Oregon, in Bend, where I would not have thought my care could be so good. The surgeon was Dana Mann, MD.

Now I need to find out how to take care of myself. Diet, exercise, future monitoring. Wish my energy would come back. Maybe with time.
I was incredibly lucky and am so grateful to the fine people working at our one hospital, who cared enough to save my life.
Thank you for letting me share this journey with you. So glad I found you all.

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Wow!!! that certainly happened fast.. Glad that you had a great surgeon to take care of you. Just take it easy and follow doctors orders..

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@marionap

About two weeks ago, after two days of worsening pain….starting with what felt like indigestion in my upper left abdomen with increasing low then full back pain….and an inability to find any position that was comfortable, or be able to eat, I went to an Urgent Care where they did all the tests, plus a CT, all of which were normal. They then suggested I head to our very busy ER. They, too, did all the tests, plus a CT. An attentive radiologist saw a barely visible anomaly in my celiac artery. They did another CT to confirm, told me I was going into surgery as soon as the surgeon, an Interventional Radiologist, and his team arrived at the hospital. Barely had time to call family, arrange for care for my dogs. The CT scan showed disruption of the celiac arterial trunk from dissection with intramural hematoma and development of pseudoaneurysm. The final “Impression” after the closed surgery was: Initial visceral angiography confirming an irregular dissection of the celiac artery and development of prominent, irregular pseudoaneurysm from the false lumen. Due to the irregular narrowed lumen, primary repair with stent graft placement was not possible. Alternative, successful coil embolization of the celiac artery trunk and bifurcation and left gastric artery to prevent further pseudoaneurysm growth and mitigate risk of rupture and hemorrhage.

So I got lucky. None of this showed up two months ago on a CT I have every year to monitor an aneurysm in my ascending aorta. I don’t know what caused it or what any of this means for the future. The surgeon had seen this before and was well qualified to perform this procedure. My experienced PCP had never seen this before. I live in central Oregon, in Bend, where I would not have thought my care could be so good. The surgeon was Dana Mann, MD.

Now I need to find out how to take care of myself. Diet, exercise, future monitoring. Wish my energy would come back. Maybe with time.
I was incredibly lucky and am so grateful to the fine people working at our one hospital, who cared enough to save my life.
Thank you for letting me share this journey with you. So glad I found you all.

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That is so incredibly fortunate that you had a team of medics that were clued in and competent. I hope you continue to heal well. This reassures my feelings that monitoring is important as I too live in an area in Canada that I pray will have the experience should my aneurysm start changing. Thanks for sharing .

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