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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I was diagnosed with celic aneurisms 10 years ago and have been so dismissed. I just keep hearing from specialty’s we don’t want to touch it because little is known. I just suffer and no one understands a very lonely disease. I recently also was diagnosed with gastroparsesis.

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I was diagnosed in 2016 w/ Celiac artery stenosis and a dissection of my SMA superior mesentaric artery with a 70% blockage I had a SMA bypass using my left femeral artery in Feb. 2017 at OHSU in Oregon. I still continue to have pain and March 2018 was hospitalized for a week with a tube in my stomach pumping out blood. My Celiac issue was never addressed so I seemed a second opinion and am going in for an angiogram and possible stent April 24th in Medford.

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@kellylinn

I was diagnosed in 2016 w/ Celiac artery stenosis and a dissection of my SMA superior mesentaric artery with a 70% blockage I had a SMA bypass using my left femeral artery in Feb. 2017 at OHSU in Oregon. I still continue to have pain and March 2018 was hospitalized for a week with a tube in my stomach pumping out blood. My Celiac issue was never addressed so I seemed a second opinion and am going in for an angiogram and possible stent April 24th in Medford.

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Best wishes for success and thanks for posting.

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@helenannmarie55

I was diagnosed with celic aneurisms 10 years ago and have been so dismissed. I just keep hearing from specialty’s we don’t want to touch it because little is known. I just suffer and no one understands a very lonely disease. I recently also was diagnosed with gastroparsesis.

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I am hopeful that sharing these posts will help you and the rest of us to seek and obtain appropriate treatment and resolution.

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I too have both SMA dissection and celiac artery aneurysm. So far it’s watch and see. No offer of repair due to risks I assume I don’t seem to be having too many symptoms. Last month there was diarrhea and bloating but that seems to have resolved. They did a CT scan as apparently this can be a sign of something changing.

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Hi I was diagnosed with a celiac artery anuerisym with dissection in 4/2010. I had severe abdominal pain for 2 weeks, lost 10 lbs before they did CT and found it. I had it repaired with immediate invasive open surgery. Since then, I have had issues with gerd, barretts disease, malnutrition, gastric and abdominal pain, bloating, and many tests to figure stuff out. Within the last 2 years, I have had intermittent abdominal pain and gastric issues with severe pain from mid upper abdomen between breasts under ribs to left side, 30 min to 5 hours in length. Yesterday 4/12/19 (9 years to the day of last surgery) I was diagnosed (AGAIN) with another celiac artery anuerisym. I have been referred to UCSF for further follow up and decisions. Has anyone else heard of someone being diagnosed again after repair? Needless to say, I am freaking out with how it was supposed to be rare and I have it again.

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I assume this is why they only repair when absolutely necessary. I am so sorry for what you have been through. I hope for your sake if the do a second repair it will be successful.
I go for an MRI in two weeks I have had three Ct scans so far no change to the aneurysm but the dissecting Mesonteric artery I hope they see some healing on. Best wishes for you!!

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@ewillard

Hi I was diagnosed with a celiac artery anuerisym with dissection in 4/2010. I had severe abdominal pain for 2 weeks, lost 10 lbs before they did CT and found it. I had it repaired with immediate invasive open surgery. Since then, I have had issues with gerd, barretts disease, malnutrition, gastric and abdominal pain, bloating, and many tests to figure stuff out. Within the last 2 years, I have had intermittent abdominal pain and gastric issues with severe pain from mid upper abdomen between breasts under ribs to left side, 30 min to 5 hours in length. Yesterday 4/12/19 (9 years to the day of last surgery) I was diagnosed (AGAIN) with another celiac artery anuerisym. I have been referred to UCSF for further follow up and decisions. Has anyone else heard of someone being diagnosed again after repair? Needless to say, I am freaking out with how it was supposed to be rare and I have it again.

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Sorry that you are having a recurrence but is good that you are having it addressed. Best wishes and please keep us informed.

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@ewillard

Hi I was diagnosed with a celiac artery anuerisym with dissection in 4/2010. I had severe abdominal pain for 2 weeks, lost 10 lbs before they did CT and found it. I had it repaired with immediate invasive open surgery. Since then, I have had issues with gerd, barretts disease, malnutrition, gastric and abdominal pain, bloating, and many tests to figure stuff out. Within the last 2 years, I have had intermittent abdominal pain and gastric issues with severe pain from mid upper abdomen between breasts under ribs to left side, 30 min to 5 hours in length. Yesterday 4/12/19 (9 years to the day of last surgery) I was diagnosed (AGAIN) with another celiac artery anuerisym. I have been referred to UCSF for further follow up and decisions. Has anyone else heard of someone being diagnosed again after repair? Needless to say, I am freaking out with how it was supposed to be rare and I have it again.

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I hear UCSF is a great research hospital. I think this is a good referral and that you're in good hands. Ill.keep you in good vibes. Let us know...?

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Prayers are with you. Has anyone found any form of relief for the aches/soreness feeling? I am trying all things to see if there might be a link to food. My first step has been to try and eliminate Gluten from my diet. It really has been hard to tell if it has helped. Some days I feel better and other days not so much. I just keep trying different things thinking something must be triggering it, but who knows at this point?

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