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

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

Profile picture for celliquelli @celliquelli

See photo. My vascular surgeon told me 2.0cm is the standard set by the vascular surgery community.

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And that 2.0cm standard is for nonruptured celiac artery aneurysms— the recommended standard is that ruptured ones of any size are to be surgically repaired

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Profile picture for andytheman @andytheman

So you’re saying that my 3cm celiac torn aneurysm that measured at 3cm a year ago should have been repaired already?
This does seem to make sense because last year it was at 3cm and nothing about the fact that it was torn was mentioned then. This summer I had to go to the ER for Coumadin poisoning and they took a cat scan and found the torn aneurysm and that hospital said they were going to have to transfer me to a trauma hospital for emergency surgery!

I asked why and the cardiovascular surgeon told me about my aneurysm so they shipped me off to the trauma hospital and when I got there their cardiovascular surgeon said that he too seen it but said “it’s not bleeding at this time so we feel you can safely be discharged. But you’ll have to come back at another time to get it repaired and said that I should see my own cardiovascular surgeon ASAP so I called to make an appointment with him and he said he wouldn’t see me unless the hospital said it was an emergency!

He was clearly annoyed and rushed to get to his other patients who had made appointment.

I said the hospital said to see you ASAP. He said that “all hospitals say that “
According to him the radiologist took a sonogram of the area and didn’t see anything. What? 2 cardiovascular surgeons seen it and he’s saying he didn’t see it. I was diagnosed by this surgeon for 2 years for the aneurysm and now he’s saying he didn’t see it?
What about those 2 other years? He said I had a 3 cm the last time I seen him a year ago. I asked him if it could burst and he said that it could “but we have ways to deal with that “
Do I have to wait until it bursts? Seeing that a burst aneurysm is usually fatal that wouldn’t give me much time between the burst and the hospital ER.
Then he started to dash for the exam room door and said “see you next year!” He didn’t answer my questions except for one. Now I’m walking around not knowing if I could die that day.
I forgot to ask him about the size of the aneurysm and the size of the tear.
Maybe it’s nothing but I would like to know the size.

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See photo. My vascular surgeon told me 2.0cm is the standard set by the vascular surgery community.

REPLY
Profile picture for celliquelli @celliquelli

The information you gave is wrong. Nonruptured Celiac artery aneurysms are operated on when they reach 2.0 cm — much much smaller than the 5.0 cm size you incorrectly described (according to National protocols established by vascular surgeons).

Jump to this post

So you’re saying that my 3cm celiac torn aneurysm that measured at 3cm a year ago should have been repaired already?
This does seem to make sense because last year it was at 3cm and nothing about the fact that it was torn was mentioned then. This summer I had to go to the ER for Coumadin poisoning and they took a cat scan and found the torn aneurysm and that hospital said they were going to have to transfer me to a trauma hospital for emergency surgery!

I asked why and the cardiovascular surgeon told me about my aneurysm so they shipped me off to the trauma hospital and when I got there their cardiovascular surgeon said that he too seen it but said “it’s not bleeding at this time so we feel you can safely be discharged. But you’ll have to come back at another time to get it repaired and said that I should see my own cardiovascular surgeon ASAP so I called to make an appointment with him and he said he wouldn’t see me unless the hospital said it was an emergency!

He was clearly annoyed and rushed to get to his other patients who had made appointment.

I said the hospital said to see you ASAP. He said that “all hospitals say that “
According to him the radiologist took a sonogram of the area and didn’t see anything. What? 2 cardiovascular surgeons seen it and he’s saying he didn’t see it. I was diagnosed by this surgeon for 2 years for the aneurysm and now he’s saying he didn’t see it?
What about those 2 other years? He said I had a 3 cm the last time I seen him a year ago. I asked him if it could burst and he said that it could “but we have ways to deal with that “
Do I have to wait until it bursts? Seeing that a burst aneurysm is usually fatal that wouldn’t give me much time between the burst and the hospital ER.
Then he started to dash for the exam room door and said “see you next year!” He didn’t answer my questions except for one. Now I’m walking around not knowing if I could die that day.
I forgot to ask him about the size of the aneurysm and the size of the tear.
Maybe it’s nothing but I would like to know the size.

REPLY
Profile picture for expat69 @expat69

Very very rare your condition, according to my researh.
Your aneurysm is only 1.2 cm, tiny, and does not normally become considered large and dangerous until 5 cm. Which might take 1-5 year or more, depends on many factors.
How fast it grows depend on lifestyle, diet, smoking, soft drink acid, and more.

Blood clot I would be more concerned about. Has your doctor prescribed blood thinning medicine?
What else your doctor say?

I had evar and AAA abdominal aorta aneurysm surgeries last year, and after that also blood clot.
It comes suddenly, and the pain is beyond anything you ever felt in your life. Rush to hospital for emergency surgery, IF one get there fast enough, and depends where the clot is located.

Your doctor is your best source for educated opinion.

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The information you gave is wrong. Nonruptured Celiac artery aneurysms are operated on when they reach 2.0 cm — much much smaller than the 5.0 cm size you incorrectly described (according to National protocols established by vascular surgeons).

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Profile picture for dan1230 @dan1230

Hello everyone. It has been very informative to read all the posts on celiac aneurysms. Three years ago I went into the er with severe stomach pain. Found out that I had a dissection in my descending artery and three blood clots. They also found an aneurysm of my celiac artery that measured 1.5cm. Nobody has spoken to me about the aneurysm. Ugh! Was back in er this past Friday after almost passing out twice on Thursday, combined with severe stomach and back pain. Found out that I now also have systemic vacuities. My stomach is always hurting, more so if I eat. Have lost almost 35lbs in the last six weeks. Currently have surgery scheduled for October to repair dissection (if I can hold out that long). Waiting to hear from Mayo this week on getting a second opinion. Thanks again for all of your posts. Nice to know I’m not alone in this.

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I just read this post. I hope that everything went well. Do You have any updates to share?

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Profile picture for kkboco @kkboco

My heart goes out to you, Dennis. Thank you for taking the time to respond in light of all you are processing.

My husband is being monitored by Dr. Frances Caputo at Cleveland Clinic. It is my understanding that both open and endovascular options are offered at the Clinic.

I will be thinking of you over the coming weeks and months. Please keep us posted on how you are doing.

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Thank you so much . Also, thanks for sharing the information regarding your husband’s doctors.

Let’s stay in touch and my best wishes to your husband !

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My heart goes out to you, Dennis. Thank you for taking the time to respond in light of all you are processing.

My husband is being monitored by Dr. Frances Caputo at Cleveland Clinic. It is my understanding that both open and endovascular options are offered at the Clinic.

I will be thinking of you over the coming weeks and months. Please keep us posted on how you are doing.

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Profile picture for kkboco @kkboco

Hi Dennis, thank you for your posts. Curious if your CAA size is still the same? Thank you.

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My CAA was first discovered in a CT scan performed in 2014. It was approximately 1.5 CM at that time. About a year ago following one of my periodic scans the CAA hadn't changed, and my doctor told me that it was unlikely to grow and I would probably never have to surgically repair it. I had another scan performed a few weeks ago and for the first time the CAA expanded to 1.9cm. My doctor ordered a more extensive scan with contrast which is scheduled for February.

Based on conversations with my doctor the risk/ reward for having surgery increases at the 1.8 to 2.0 cm size and the risk of rupture at 2.0cm indicates the need for surgery. Now that I am at the cusp of having to take remedial action, I would like to weigh various options. It is my understanding that the surgery is extensive, and members of this group have posted that it lasts ten hours. I think that embolization is a much less invasive option and i would like to do some research and invite comments from others in this group as to their knowledge? experience with embolization to repair a CAA. Due to the rarity of this condition, it would also be helpful to know of vascular surgeons in various locations where both the traditional surgery and embolizations have been performed.

Regards

Dennis

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Profile picture for codonpatrick @codonpatrick

Randy

Thanks for sending the article. I misstated as mine is 1.5 CM. just slightly larger than yours. I just had a CTA last week and my doctor felt that there was nothing to be concerned about as it has barely grown since it was discovered six years ago. He felt that another contrast scan in three years would be sufficient with a non contrast scan in a year.

Dennis

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Hi Dennis, thank you for your posts. Curious if your CAA size is still the same? Thank you.

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All, I have been reading and finding peace on this site since my husband's incidental and asymptomatic finding of a 1.2cm CAA one year ago. He is having his annual ultrasound on Thursday. I am curious -- for those of you who have been on "watch and wait" (some dating back to 2016), have any of you had any change in size from your original diagnosis? If so, how much change, and are you still on watch and wait? Thank you in advance... I am nervous for Thursday. Sending healing energy to everyone on this string... PS - I think there are many like me who have been quietly reading this community... point being, diagnosis seems to be more and common... take care all.

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