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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helenannmarie55 | @helenannmarie55 | Apr 6, 2019

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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sadie168 | @sadie168 | Mar 23, 2019
In reply to @marylisa "Reirel, I am sorry for everything you have gone through. It is very scary. I hope..." + (show)
@marylisa

Reirel, I am sorry for everything you have gone through. It is very scary. I hope you will ask your doctors for more information and perhaps seek a consult with Mayo, Cleveland Clinic or a major medical center. Is it a celiac aneurysm or something else? I have a celiac aneurysm and this condition is relatively rare so many doctors do not diagnose it or even know to look for it. Fortunately I live in a major city with excellent doctors and a university hospital. It was discovered last year after I had a splenic infarction which was caused by a clot from the celiac aneurysm (I also have stenosis at the same spot.) As a result my spleen mostly died from the lack of blood. They did not remove the spleen since that is no longer the usual protocol. My doctor is taking a wait and see approach since the aneurysm is relatively small. I see my internist twice a year and a vascular surgeon once a year. But that is what I have experienced and may be very different for you. I wish you the best and hope you will keep us posted. This group has been very helpful for me and we learn from each other.

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@marylisa I saw that you go to Emory. A CT showed I have celiac stenosis and I was curious which vascular doctor you see there.

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codonpatrick | @codonpatrick | Mar 20, 2019

Thanks for that information. I have picked up 3 potential second opinion Doctors. It is great that you had such great success. There is reason for optimism !!!

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mfolan | @mfolan | Mar 20, 2019

I had an excellent doctor at Advocate Hospital (Lutheran General) in Park Ridge, IL Interventional Radiologist. He removed my massive celiac artery aneurysm and put a stent in my celiac artery. His name is Dr. Marshall Dines http://advancedradiologyconsultants.net/doctors/jenkins.html So far all my CT scans have been good. My aneurysm has vanished and the stent in my artery looks good.

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codonpatrick | @codonpatrick | Mar 20, 2019
In reply to @dollylinda "Nice to know of a doctor with experience." + (show)
@dollylinda

Nice to know of a doctor with experience.

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yes ... and they bare few and far between

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dollylinda | @dollylinda | Mar 20, 2019
In reply to @jurney01 "Paul DiMuzio, MD, FACS is a doctor in Philadelphia, Pa. He has experience with celiac aneryisum...." + (show)
@jurney01

Paul DiMuzio, MD, FACS is a doctor in Philadelphia, Pa. He has experience with celiac aneryisum. Google him. He has medical journals published on the work he has completed

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Nice to know of a doctor with experience.

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codonpatrick | @codonpatrick | Mar 20, 2019

Thanks! I will do that

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Jen | @jurney01 | Mar 20, 2019
In reply to @codonpatrick "The Vascular surgeon that I have consulted with at UCLA has made no recommendations whatsoever other..." + (show)
@codonpatrick

The Vascular surgeon that I have consulted with at UCLA has made no recommendations whatsoever other than to periodically monitor with a CT scan. He told me that if it doesn't enlarge just let it go and that I will likely never need a repair. At some point I plan to get a second opinion from a surgeon who has had experience treating the condition. It may mean a trip to Nashville , Dallas or Chicago based on what others in the group have discussed. It would be nice to have a list of surgeons who have successfully repaired celiac aneurysms. There is no substitute for experience.

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Paul DiMuzio, MD, FACS is a doctor in Philadelphia, Pa. He has experience with celiac aneryisum. Google him. He has medical journals published on the work he has completed

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1 reply
dollylinda | @dollylinda | Mar 19, 2019
In reply to @codonpatrick "The Vascular surgeon that I have consulted with at UCLA has made no recommendations whatsoever other..." + (show)
@codonpatrick

The Vascular surgeon that I have consulted with at UCLA has made no recommendations whatsoever other than to periodically monitor with a CT scan. He told me that if it doesn't enlarge just let it go and that I will likely never need a repair. At some point I plan to get a second opinion from a surgeon who has had experience treating the condition. It may mean a trip to Nashville , Dallas or Chicago based on what others in the group have discussed. It would be nice to have a list of surgeons who have successfully repaired celiac aneurysms. There is no substitute for experience.

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I am just checking in with the group. I have been diagnosed with a celiac aneurysm for about 1-1/2 years. I believe I've had it for about 4 or 5 years, which was when I had the onset of the rib pain syndrome. I just wanted to say that my rib pain was much worse for the first 4 years. It was 24/7 discomfort. Over the last year it has improved a lot. Just wanted to give a little hope to some of you. I have not had any procedure, but I do take gabapentin now and it's working for me.

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codonpatrick | @codonpatrick | Mar 19, 2019
In reply to @mpolityka "Back from my visit with Vascular Surgeon. Not much different news to report. He said since..." + (show)
@mpolityka

Back from my visit with Vascular Surgeon. Not much different news to report. He said since the size of mine 1.6cm hadn't changed over the past 7 years that they would not do any repair unless it got up to around 2.5 cm. He said he had done a repair previously but that the surgery is just too tricky and not necessary at this point. Scheduled a follow up CT for one year out.

Does anyone know if an Ultrasound would provide necessary results to avoid repeated CT's?

I guess I can live with knowing I have this and know that mine hasn't changed over the last 7 years so I try not to worry about it. The issue I have is the unexplained pressure, aching under the rib cage. Some days like I said it is better than others. He recommended trying an acid reflux medicine or antacid to see if that helps. Has anyone else found any remedy that seems to help with these similar symptoms?

Also, to try and prevent the aneurysm from getting larger he suggested taking a daily aspirin and a cholesterol med. Anyone else get this recommendation? I just saw on the nightly news last night that the FDA has warned now against taking aspirin daily and it has other side effects. Not sure if it is worth it for me to start this at age 49 knowing mine hasn't grown. Curious to what others think or have done?

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The Vascular surgeon that I have consulted with at UCLA has made no recommendations whatsoever other than to periodically monitor with a CT scan. He told me that if it doesn't enlarge just let it go and that I will likely never need a repair. At some point I plan to get a second opinion from a surgeon who has had experience treating the condition. It may mean a trip to Nashville , Dallas or Chicago based on what others in the group have discussed. It would be nice to have a list of surgeons who have successfully repaired celiac aneurysms. There is no substitute for experience.

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