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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@hopeful33250

@andytheman

I hope that you get some resolution to these varying opinions. Will you post again if you get another opinion?

In the meantime, how are you feeling?

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I have no pain right now and yes, I will post again with an update. Thank you

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@shawn1775

Thank you for this information. i just received a bit of hopeful news from the doctor stating that the size was a minimal 9mm, so not yet 1cm. I have been referred for more tests.

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How many millimeters per centimeter? I was diagnosed with a 3 cm and also been measured at 40mm. How many centimeters is that?

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@andytheman

How many millimeters per centimeter? I was diagnosed with a 3 cm and also been measured at 40mm. How many centimeters is that?

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10 mm per cm , so a 40 mm would be 4cm.

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So, I went to the vascular surgeon and he said that they wouldn't do any surgery until it reaches 2cm. Since mine is 1.8cm if they would still do surgery. He said not until it hits 2cm and that's protocol. (I'm 2mm short of surgery) He wants another scan in 6 months. I do have an appointment in a few weeks for an ultrasound and a doppler to check blood flow in my legs. To be honest, I want a second opinion. My insurance case manager called me to see how my appointment went and I told her that he wants to wait another 6 months. I told her that I wasn't comfortable with that. So, I asked my family doctor for a referral to the Mayo clinic. She agreed 100% with me and she asked that Mayo do a case evaluation on me. That way they can look at all the data and scans to see if I really need to wait. If I hear that Mayo clinic wants me to wait then I'll be ok waiting. I guess I need to hear if from more that one professional.

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@johnnyfive

10 mm per cm , so a 40 mm would be 4cm.

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Oh so it was 3cm once and it grew to 4cm. Thank you. I was born in Canada and they use the metric system. I forgot about metric measurements once I became an American citizen. Also, I thought it had to reach 5 cm before we start talking about surgery. The other poster said his would be done when it reaches 2cm. I find that kind of low.
Thanks!

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@johnnyfive

So, I went to the vascular surgeon and he said that they wouldn't do any surgery until it reaches 2cm. Since mine is 1.8cm if they would still do surgery. He said not until it hits 2cm and that's protocol. (I'm 2mm short of surgery) He wants another scan in 6 months. I do have an appointment in a few weeks for an ultrasound and a doppler to check blood flow in my legs. To be honest, I want a second opinion. My insurance case manager called me to see how my appointment went and I told her that he wants to wait another 6 months. I told her that I wasn't comfortable with that. So, I asked my family doctor for a referral to the Mayo clinic. She agreed 100% with me and she asked that Mayo do a case evaluation on me. That way they can look at all the data and scans to see if I really need to wait. If I hear that Mayo clinic wants me to wait then I'll be ok waiting. I guess I need to hear if from more that one professional.

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Hello @johnnyfive,

It is good that you are being proactive and searching for the best treatment/diagnosis possible. I'm glad that your doctor is proceeding with a referral to Mayo. I hope that goes well for you.

I'm wondering about the doppler for your legs. Are you having leg symptoms?

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@hopeful33250

Hello @johnnyfive,

It is good that you are being proactive and searching for the best treatment/diagnosis possible. I'm glad that your doctor is proceeding with a referral to Mayo. I hope that goes well for you.

I'm wondering about the doppler for your legs. Are you having leg symptoms?

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No leg symptoms, they are checking for blood flow. He told me one of the most common places for an aneurysm is behind the knee and since I already have one aneurysm then I probably have one or more of them. He also put me on a 20lb weight limitation.

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@johnnyfive

No leg symptoms, they are checking for blood flow. He told me one of the most common places for an aneurysm is behind the knee and since I already have one aneurysm then I probably have one or more of them. He also put me on a 20lb weight limitation.

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@johnnyfive

It sounds like your doctor is being thorough. Has the doppler for the legs been scheduled yet?

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@hopeful33250

@johnnyfive

It sounds like your doctor is being thorough. Has the doppler for the legs been scheduled yet?

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Yes, the doppler and ultrasound are both scheduled the week of the 22nd this month. I'm not sure how long the referral to Mayo will take. I sent the request in last week and asked for a case evaluation. Will they just review my scan and call my doctor or call me to ask questions?

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Hey All, Last week I was diagnosed with the celiac aneurysm at 1.0 cm with dissection. As many others here, been a very worrisome time. Trying to find a Vascular Surgeon in my network has been a challenge. My issue started with severe upper abdomen and mid back pain that was very painful and couldn't sleep because I couldn't lay on my back or side. They did CT scan and ended up finding the aneurism. I guess this is rare, but with the dissection with it, it is double rare, so as I am sure with many of you, its a scary feeling. While my size is only 1.0, and everything I have seen minimizes the severity of it, the dissection really adds to my concern. I will post next after I meet with a VS (Hopefully soon).

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