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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@codonpatrick

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

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This is to Mary.
I completely agree with Dennis. My vascular surgeon in Eugene. Oregon, says the same thing to me. I also use to have a lot of right rib pain. It was bad for about 4 years. It actually started to get better. I just had an unrelated CT scan that showed my aneurysm was exactly the same size as it was 2-1/2 years ago.
At the surgeons office I get yearly ultrasound checks.

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i have seen that report in JAMA.. It is also almost 17 yrs old and not much has changed from that report. Mine is 1.6 cm and my dr. told me not to worry and just have scans every year or so to monitor .. at this point i'm just living life as normal. I have no symptoms at this point either..

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@codonpatrick

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

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Dennis, I appreciate your reply. You gave good advice and I wish you well on your health journey.

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@dollylinda

I don’t know the answer, but I’m 5’3 also and my aneurysm is also 1.3cm. I’ve had it for 2 years that I’m aware of. I was freaked out when I found out but have come to grips with it and don’t worry at all. I get an ultrasound every year. They say it’s stable.
Best wishes!

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Maybe I'll come to terms with it. You've been given some bit of good news. Thanks for your reply.

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@asdf

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. 😳

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@asdf – The Cleveland Clinic in FL may be closer to you than Mayo in Jacksonville. I think their hospital is near the west coast in addition to a clinic in West Palm Beach.

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@kdh1

I had my surgery at Abbott the Doctors name is Timothy M. Sullivan. Very good Dr explains everything. Takes time not just in and out. Would highly recommend him.

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Colleen, I am near Fort Myers in SW Florida. Is your doctor near me or in a state nearby?

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@astaingegerdm

@asdf – The Cleveland Clinic in FL may be closer to you than Mayo in Jacksonville. I think their hospital is near the west coast in addition to a clinic in West Palm Beach.

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Oh, this is good news! Thank you, Ingegerd.

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Ken, this was an excellent article, although, you're right that it's a bit dated. I really appreciate the info. Thanks!

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@65coupe

i have seen that report in JAMA.. It is also almost 17 yrs old and not much has changed from that report. Mine is 1.6 cm and my dr. told me not to worry and just have scans every year or so to monitor .. at this point i'm just living life as normal. I have no symptoms at this point either..

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Yes, thanks for the info.

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