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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ewillard | @ewillard | Apr 16, 2019
In reply to @hopeful33250 "@ewillard I appreciate your kind comments to me. Later this month I'll have a follow-up exam..." + (show)
@hopeful33250

@ewillard

I appreciate your kind comments to me. Later this month I'll have a follow-up exam to check on the tumor status.

I've found that keeping active both physically and mentally helps with anxiety during times of waiting. What plans do you have for getting through this waiting mode? Do you have any hobbies or activities that will help you to keep from worrying?

Jump to this post

I hope your follow up comes with good results!
I have to work and when I get home we are planning our next moves...everyone is on edge so emotions are touchy. My sons live in different states and want to come before surgery along with a couple of my siblings who live a long distance away.

Been playing dice games but most I have been cleaning because when I stress out I cant sit still.

REPLY
1 reply
ewillard | @ewillard | Apr 16, 2019
In reply to @dollylinda "Yes... For me the Keto diet helps a lot. I have to follow it very closely...." + (show)
@dollylinda

Yes... For me the Keto diet helps a lot. I have to follow it very closely. Reduces inflammation. I have a lot of right rib and waist pain.

Jump to this post

I can't do the keto because I have Issues with fats. My doctor just recommended low FODmap so when I am done with If or if not I am doing surgery then I will try that.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 16, 2019
In reply to @ewillard "Hi. Thank you. That is exactly how it feels! I am in a waiting mode and..." + (show)
@ewillard

Hi. Thank you. That is exactly how it feels! I am in a waiting mode and that isnt good either. I will keep you updated when I know more.

I am sorry that you struggle with an illness and it reoccurring. That is terrible. I hope that you are getting anseets/treatment that help as resolve your issues.

Jump to this post

@ewillard

I appreciate your kind comments to me. Later this month I'll have a follow-up exam to check on the tumor status.

I've found that keeping active both physically and mentally helps with anxiety during times of waiting. What plans do you have for getting through this waiting mode? Do you have any hobbies or activities that will help you to keep from worrying?

REPLY
1 reply
dollylinda | @dollylinda | Apr 15, 2019
In reply to @mpolityka "Prayers are with you. Has anyone found any form of relief for the aches/soreness feeling? I..." + (show)
@mpolityka

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?

Jump to this post

Yes... For me the Keto diet helps a lot. I have to follow it very closely. Reduces inflammation. I have a lot of right rib and waist pain.

REPLY
1 reply
ewillard | @ewillard | Apr 15, 2019
In reply to @onemind711 "I hear UCSF is a great research hospital. I think this is a good referral and..." + (show)
@onemind711

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...?

Jump to this post

I, too, believe I will be in good hands. I will let you know any updates. 🙂

REPLY
ewillard | @ewillard | Apr 15, 2019
In reply to @hopeful33250 "Hello @ewillard and welcome to Mayo Connect. I can certainly understand your discouragement and your "freaking..." + (show)
@hopeful33250

Hello @ewillard and welcome to Mayo Connect.

I can certainly understand your discouragement and your "freaking out with how it was supposed to be rare and I have it again" as you said in your post. While I have never had this problem, I have had a rather rare disorder myself with reoccurrences. When a disorder is rare, it seems to create even more anxiety because it is something that only a few people can relate to. Is that the way you feel?

It sounds as if you are getting some good medical attention and I hope that your visit to UCSF is helpful to you. Will you provide an update and let us know how you are doing?

Jump to this post

Hi. Thank you. That is exactly how it feels! I am in a waiting mode and that isnt good either. I will keep you updated when I know more.

I am sorry that you struggle with an illness and it reoccurring. That is terrible. I hope that you are getting anseets/treatment that help as resolve your issues.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 15, 2019
In reply to @ewillard "Hi I was diagnosed with a celiac artery anuerisym with dissection in 4/2010. I had severe..." + (show)
@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.

Jump to this post

Hello @ewillard and welcome to Mayo Connect.

I can certainly understand your discouragement and your "freaking out with how it was supposed to be rare and I have it again" as you said in your post. While I have never had this problem, I have had a rather rare disorder myself with reoccurrences. When a disorder is rare, it seems to create even more anxiety because it is something that only a few people can relate to. Is that the way you feel?

It sounds as if you are getting some good medical attention and I hope that your visit to UCSF is helpful to you. Will you provide an update and let us know how you are doing?

REPLY
1 reply
mpolityka | @mpolityka | Apr 15, 2019

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?

REPLY
1 reply
onemind711 | @onemind711 | Apr 14, 2019
In reply to @ewillard "Hi I was diagnosed with a celiac artery anuerisym with dissection in 4/2010. I had severe..." + (show)
@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.

Jump to this post

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...?

REPLY
1 reply
codonpatrick | @codonpatrick | Apr 14, 2019
In reply to @ewillard "Hi I was diagnosed with a celiac artery anuerisym with dissection in 4/2010. I had severe..." + (show)
@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.

Jump to this post

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

REPLY
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