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Jen
@jurney01

Posts: 4
Joined: Jul 05, 2016

Celiac Artery Aneurysm

Posted by @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

REPLY

@jurney01 Hi Jen: I just saw your post regarding your health problem. I’m so sorry to hear about that, but I’m glad that you were able to have a procedure to help. While I’ve never been diagnosed with this, I also have a rare disorder, Neuroendocrine tumors, and I know how important it is to connect to others who are also going through something similar. Hopefully, someone on Mayo Connect will be able to relate with you and share their experiences. I see that you just recently joined Mayo Connect so let me welcome you to this very supportive, encouraging community. We are here for each other and learn from each other!

I “googled” the disorder and I see that is very rare. If you would like to share your experience, please let us know how your doctor found this aneurysm and if you were having specific symptoms or if it was just found incidentally. Best wishes to you as you share your experience and find help and support from others! Teresa

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

@hopeful33250

@jurney01 Hi Jen: I just saw your post regarding your health problem. I’m so sorry to hear about that, but I’m glad that you were able to have a procedure to help. While I’ve never been diagnosed with this, I also have a rare disorder, Neuroendocrine tumors, and I know how important it is to connect to others who are also going through something similar. Hopefully, someone on Mayo Connect will be able to relate with you and share their experiences. I see that you just recently joined Mayo Connect so let me welcome you to this very supportive, encouraging community. We are here for each other and learn from each other!

I “googled” the disorder and I see that is very rare. If you would like to share your experience, please let us know how your doctor found this aneurysm and if you were having specific symptoms or if it was just found incidentally. Best wishes to you as you share your experience and find help and support from others! Teresa

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Thank you for your kind words. The aneurysm was found once a cat scan was completed. I went to the hospital with abdominal pain and vomiting. I never expected this diagnosis. I had to be transferred to another hospital since the vascular surgeon never had experience with this illness.
I hope you are well as we share rare disorders. Lol. I appreciate your time and look forward to connecting with others like you ar the Mayo Clinic

Jen

@hopeful33250

@jurney01 Hi Jen: I just saw your post regarding your health problem. I’m so sorry to hear about that, but I’m glad that you were able to have a procedure to help. While I’ve never been diagnosed with this, I also have a rare disorder, Neuroendocrine tumors, and I know how important it is to connect to others who are also going through something similar. Hopefully, someone on Mayo Connect will be able to relate with you and share their experiences. I see that you just recently joined Mayo Connect so let me welcome you to this very supportive, encouraging community. We are here for each other and learn from each other!

I “googled” the disorder and I see that is very rare. If you would like to share your experience, please let us know how your doctor found this aneurysm and if you were having specific symptoms or if it was just found incidentally. Best wishes to you as you share your experience and find help and support from others! Teresa

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@jurney01 Jen: Thanks for sharing some more info about your situation with all of us. Please keep us posted as you continue to learn about your disorder. Most of us have found that information and education is our greatest ally in dealing with disorders. When you add to that the sense of camaraderie that you find with others at Mayo Connect you have a winning combination! Best wishes.

Hi Jen, @jurney01 My dad was recently diagnosed with a celiac artery aneurysm. He has not had surgery yet (it’s kind of a long story). But I think he would like to talk to someone who has, get a little feedback as to what to expect and maybe just bend your ear.

Liked by randy1950

Hello @saschlief,

I’m sorry to hear about your dad’s diagnosis, but so glad that you came to Connect to seek some information from Jen, @jurney01.

As @hopeful33250 mentioned earlier, celiac artery aneurysm is indeed rare, but I would encourage you to read this article about some research done at Mayo Clinic which shows that endovascular repair could be effective in treating aneurysms involving branches of the celiac and superior mesenteric arteries: http://mayocl.in/1OS5tAf

saschlief, I’d also like to introduce you to a few members who have talked about living with abdominal aortic aneurysm. @janetpomponio, @kdh1, @playsdixie, @elsinann, @lynnkay1956, @ssams, @jessicalatessa, do you have any insight for @saschlief that would help her father?

@saschlief, could you give us a few more details? What symptoms did your dad have that led to this diagnosis? How is his doctor monitoring the aneurysm to make sure it does not get too enlarged?

Jen,
You and I are both very rare. I was just diagnosed with a celiac artery Aneurism last week. I Like you was experiencing severe abdominal pain. I was absolutely not expecting this news after CT scan. Like you I was quickly transferred to a hospital that had vascular surgeons on staff. I’m now released with low grade pain with a wait and see approach. In two weeks they are repeating the CT scan to monitor it. The frustrating part for my family is the wait and see approach. They would much rather have a fix. I’m happy to find someone else with this condition at least to chat with. I’d be happy to share my experiences in more detail if your interested. Doug

Hello @dougf,

Welcome to Connect; we’re so glad to have you here. Please join us anytime with your questions and insights.

Jen, @jurney01, it’s been a while since we heard from you; how are you? @saschlief, how is your dad doing?

I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?

At this point not in my case. They told me they really don’t know the cause and I have none of the risk factors like High cholesterol, smoking, High blood pressure. Sometimes it just happens. They did a battery of Rheumatology tests on me to rule out connective tissue disease etc. So no underlying cause was identified at this point.

Not my case either. The doctors have no clue. They had thought possibly hereditary or even stress. I consider myself lucky to still be alive..
🙂 🙂

@colleenyoung

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

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I had an open surgery and everthing went extremly well. Went in for my one year check up and was given excellent grades. The person that did the ultra sound said the repair was so good the graff blended right in with the aorta. I am very pleased. I am a smoker and the kidney veins were getting clised. He opened one but didn’t have time to open and clean the other one.

@colleenyoung

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

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Excellent to hear, all is well. Based on research I’ve done there has been no one who had the surgery that had bad results. Mine is only 1.8 CM so they want to wait and see but I’m heavily leaning towards getting it done after next follow up in 3 months.

@colleenyoung

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

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Mine was 5.5 so had grown quite a bit so it had to be operated  on.  I am glad it is over.

@colleenyoung

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

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Where did you have your surgery? Dr.’s name?

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