Celiac Artery Aneurysm: Anyone else with same illness?

Have you read this https://jamanetwork.com/journals/jamasurgery/fullarticle/212580

Mary

I have been in this group for more than a year. The rarity of this condition is likely a significant reason as to why our respective doctors have varying views as to monitoring and potential corrective treatment. A couple have had their CA repaired so I urge you to read all the postings to learn of their experiences , where they were treated and how the majority of us who have not had treatment deal with the condition. My CA is 1.5 cm and I just had a scan last week and met with my Dr. who is a vascular surgeon at UCLA. I met with on Monday and he told me not to worry and have it scanned again in 3 years. He told me that it hasn't increased in size vey much since it was first discovered 7 years ago and it is unlikely to ever become a problem. My experience and medical advice differs from others so reading other postings could be helpful to you. I do recall that someone who I believe is a nurse was contemplating a move to Jacksonville as the Mayo Clinic there has experience with CA repair.

Regards

Dennis

Hi, my name is Mary and I have been diagnosed with a celiac aneurysm with mesenteric haziness found during a colonoscopy.

The aneurysm is 1.3 cm. I have to wonder if the number that is used for determining an operation is based on males. I'm 5'4", whereas my husband is 6'3". Why would we use the same size of aneurysm to determine time for an operation? No one in SW Florida is experienced in this rare condition. If I went to the Mayo in Jackson, who would I go to? Any recommendations? I am frightened and feel like I've got a ticking time bomb inside me. 😳

Hi, my name is Mary and I have been diagnosed with a celiac aneurysm with mesenteric haziness found during a colonoscopy.

The aneurysm is 1.3 cm. I have to wonder if the number that is used for determining an operation is based on males. I'm 5'4", whereas my husband is 6'3". Why would we use the same size of aneurysm to determine time for an operation? No one in SW Florida is experienced in this rare condition. If I went to the Mayo in Jackson, who would I go to? Any recommendations? I am frightened and feel like I've got a ticking time bomb inside me. 😳

Hello ALL..I was diagnosed with an aneurysmal dilitation of the distal celiac axis 2 years ago. Caught when I had a CTA of the chest due to severe back pain between my shoulder blades. I was diagnosed with a descending aortic dissection and had TEVAR to repair. No one really said anything about the celiac artery aneurysm because they were more concerned about the descending aortic dissection. My PCP actually told me that if it were to rupture I'd be dead before hitting the ground. I am currently in a new position and won't have insurance until October. I plan on getting a new PCP and going to MAYO in Jacksonville. I am scared everyday. I don't know my measurements on the celiac artery. Good luck to you all. Glad there are others like me. I am 53, female. Not overweight nor ever smoked. I am a nurse and worked night shift for years. Now on days.

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.

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.

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.