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.

@briandem

Thanks for your reply Andytheman! So you have had this with dissection for 2 years? Have you gotten a second opinion? It's tough because of the double rarity of this aneurysm + dissection, means less doctors with enough knowledge an experience, so finding the right one that will actually put themselves in your position. Sorry you are going through that, I have been panicking for just a couple days, so can not imagine. I did et a call back from the referral people who found a VS that will see me today, so i will post after that happens.

Jump to this post

Good luck. I’m searching for a similar Cardiovascular surgeon. My PCP just keeps telling me to go see my cardiovascular surgeon. The same one that blew me off!

REPLY
@dan1230

Andy,
Welcome. I too have a 1.6cm aneurysm and dissection of the celiac artery, I just had open repair of my SMA to fix the aneurysm and dissection. It was a 10.5 hour surgery last December(2022). I had/have a great vascular surgeon from Mayo in Rochester MN. The biggest thing I can tell you is to be YOUR biggest advocate. No one knows your body better than you! Had I not pushed and found the surgeon I did, and with Gods help, I would not be here today!! Stand up for yourself and your body and keep looking until you find the Doctor and Team that have your best interest in mind. They have been watching my Celiac aneurysm for several years with not much change. I wish you the best and know that you will get to the bottom of everything.

Dan

Jump to this post

Thank You for the advice. I will continue to fight those doctors who only give me 10 minutes per visit twice a year. Not acceptable. I’m convinced that certain doctors have a “God complex” and don’t give patients the benefit of a back and forth conversation regarding their concerns.
I will get to the bottom of this even if I pro change doctors and specialists
André

REPLY
@andytheman

Hi Dave from the great Country of Canada. Nice to hear from a fellow Canadian. I’m a transplanted Canadian and a Canadian citizen (and at heart). I was born and raised in Sherbrooke in the Province of Quebec.
I am now a naturalized American citizen. That makes me a dual citizen of both Countries and can vote in the Canadian and American elections due to a Canadian Supreme Court decision.

I know that some Canadians don’t want Americans voting in their elections because I don’t live, work, or pay taxes in Canada. But Canada has determined that if you are born in Canada (like me) You will always be a Canadian. Doesn’t matter where Canadians live, they are still considered Canadians. My family was 5 kids and a set of parents. We moved to New England because my dad worked as a loom fixer for $40.00 a month in Sherbrooke.
Why we moved was strictly economic. His $40.00 a month became $40.00 a week as a loom fixer in the USA.
Anyways, this is not a forum to discuss what country you’re from but it is about aneurysms. My aortic celiac aneurysm, though very rare, is not unheard of in the medical community.
My previous post explains everything but here it is, several months later and I still haven’t seen another VS for a second opinion. My primary care physician said that I should see the same cardiovascular doctor that blew me off. I have no pain but my aneurysm is torn for crying out loud! My Cardiovascular surgeon says he didn’t see anything although he did the past 2 years. He’s lying to me so I’m looking for a second opinion from a “real “ cardiovascular surgeon.

The other scary part is that I had open heart surgery in 2015 and now have to be tested weekly because I am on a blood thinner.
Is being on a blood thinner and having a torn aneurysm a reason for concern? I need to know. Not “see you next year “. So I feel like a walking time bomb. It could be nothing or it could be a large torn aneurysm. I want to know either way. My PCP blew me off and rushed me to the point that I couldn’t even ask questions about my health. 10 minute appointment spending more time with the nurse who took my vitals than time spent with him.
Lately I have noticed that doctor appointments are only 10 minutes of actual “doctor “ time. So he does have to send a referral for insurance requirements.
What am I supposed to do?

Jump to this post

Andy,
Welcome. I too have a 1.6cm aneurysm and dissection of the celiac artery, I just had open repair of my SMA to fix the aneurysm and dissection. It was a 10.5 hour surgery last December(2022). I had/have a great vascular surgeon from Mayo in Rochester MN. The biggest thing I can tell you is to be YOUR biggest advocate. No one knows your body better than you! Had I not pushed and found the surgeon I did, and with Gods help, I would not be here today!! Stand up for yourself and your body and keep looking until you find the Doctor and Team that have your best interest in mind. They have been watching my Celiac aneurysm for several years with not much change. I wish you the best and know that you will get to the bottom of everything.

Dan

REPLY
@daveincanada

Hi everyone, Canadian here and a new member to this exclusive club.

Similar story to many, I had a CT scan for something completely unrelated and it came back saying I have a 17 mm partially calcified celiac artery aneurysm. That was about 3 weeks ago and I’m waiting for my appt to be scheduled with the vascular surgeon.

Like others in this thread, I also get twinges (not painful, just discomfort) just under the rib, usually my left side. They’ve been there a while and didn’t think much of it, but after this diagnosis and reading the experiences of others here, I’m thinking it’s related.

Not sure whether I want the VS to say I need surgery or wait & see, but anxious to find out one way or another. I’ll report back when I know!

Jump to this post

Hi Dave from the great Country of Canada. Nice to hear from a fellow Canadian. I’m a transplanted Canadian and a Canadian citizen (and at heart). I was born and raised in Sherbrooke in the Province of Quebec.
I am now a naturalized American citizen. That makes me a dual citizen of both Countries and can vote in the Canadian and American elections due to a Canadian Supreme Court decision.

I know that some Canadians don’t want Americans voting in their elections because I don’t live, work, or pay taxes in Canada. But Canada has determined that if you are born in Canada (like me) You will always be a Canadian. Doesn’t matter where Canadians live, they are still considered Canadians. My family was 5 kids and a set of parents. We moved to New England because my dad worked as a loom fixer for $40.00 a month in Sherbrooke.
Why we moved was strictly economic. His $40.00 a month became $40.00 a week as a loom fixer in the USA.
Anyways, this is not a forum to discuss what country you’re from but it is about aneurysms. My aortic celiac aneurysm, though very rare, is not unheard of in the medical community.
My previous post explains everything but here it is, several months later and I still haven’t seen another VS for a second opinion. My primary care physician said that I should see the same cardiovascular doctor that blew me off. I have no pain but my aneurysm is torn for crying out loud! My Cardiovascular surgeon says he didn’t see anything although he did the past 2 years. He’s lying to me so I’m looking for a second opinion from a “real “ cardiovascular surgeon.

The other scary part is that I had open heart surgery in 2015 and now have to be tested weekly because I am on a blood thinner.
Is being on a blood thinner and having a torn aneurysm a reason for concern? I need to know. Not “see you next year “. So I feel like a walking time bomb. It could be nothing or it could be a large torn aneurysm. I want to know either way. My PCP blew me off and rushed me to the point that I couldn’t even ask questions about my health. 10 minute appointment spending more time with the nurse who took my vitals than time spent with him.
Lately I have noticed that doctor appointments are only 10 minutes of actual “doctor “ time. So he does have to send a referral for insurance requirements.
What am I supposed to do?

REPLY

Hi everyone, Canadian here and a new member to this exclusive club.

Similar story to many, I had a CT scan for something completely unrelated and it came back saying I have a 17 mm partially calcified celiac artery aneurysm. That was about 3 weeks ago and I’m waiting for my appt to be scheduled with the vascular surgeon.

Like others in this thread, I also get twinges (not painful, just discomfort) just under the rib, usually my left side. They’ve been there a while and didn’t think much of it, but after this diagnosis and reading the experiences of others here, I’m thinking it’s related.

Not sure whether I want the VS to say I need surgery or wait & see, but anxious to find out one way or another. I’ll report back when I know!

REPLY
@hopeful33250

Just wondering, @briandem, are you taking meds for your blood pressure?

As many of the Connect members were given restrictions on lifting, I'm wondering if you were you given any weight restrictions regarding lifting?

Jump to this post

I am taking blood pressure and 1 mg aspirin per the ER I went to. Had my physical 2 weeks ago and my BP was normal, but was elevated at the ER. When they conferred with a VS contact the ER Doc had, they suggested it to keep the pressure low to control the size of the aneurism and the aspirin to I believe thin the blood through the dissection to prevent clot. the dissection is at the aneurism like bypassing through the wall.
Went to GP yesterday and he's keeping me on them. He did tell me not to work out until I meet with a VS to prevent any stress on it. I am still waiting for the VS to call as when I called them following the referral from my GP, they were discussing if they would be able to take my case. So needless to say, still up in the air.

REPLY
@briandem

Thanks Teresa, yes they do, but when we called they said that they were not in our network, so feel the insurance company is touting doctors that may have at one time been in the network but are no longer. They are supposed to update every 6 days so I highly doubt that many left in the previous 6 days. My doctor's office is working up a referral and will find one for us that is in the network so hopefully will hear back soon.
As many others here have said, I feel like a ticking time bomb and while supposed to keep my blood pressure down, how is it possible when the anxiety is through the roof!

Jump to this post

Just wondering, @briandem, are you taking meds for your blood pressure?

As many of the Connect members were given restrictions on lifting, I'm wondering if you were you given any weight restrictions regarding lifting?

REPLY

Thanks for your reply Andytheman! So you have had this with dissection for 2 years? Have you gotten a second opinion? It's tough because of the double rarity of this aneurysm + dissection, means less doctors with enough knowledge an experience, so finding the right one that will actually put themselves in your position. Sorry you are going through that, I have been panicking for just a couple days, so can not imagine. I did et a call back from the referral people who found a VS that will see me today, so i will post after that happens.

REPLY
@briandem

Thanks Teresa, yes they do, but when we called they said that they were not in our network, so feel the insurance company is touting doctors that may have at one time been in the network but are no longer. They are supposed to update every 6 days so I highly doubt that many left in the previous 6 days. My doctor's office is working up a referral and will find one for us that is in the network so hopefully will hear back soon.
As many others here have said, I feel like a ticking time bomb and while supposed to keep my blood pressure down, how is it possible when the anxiety is through the roof!

Jump to this post

I have the same celiac aneurysm with a tear in it. It is currently at 3 cm. I am concerned because I went to a hospital emergency room for something not related with aneurysms.

Of course as usual the ER doctor ordered a CT scan with dye. He came back to my examination room and said “ we are going to transfer you to a trauma hospital for emergency surgery because you have a celiac aneurysm and it has a tear in it, It’s presently at
3 cm.”
So they shipped me to the trauma hospital and when I got there they already had the CT scan image. The cardiovascular surgeon acknowledged the aneurysm and said that “because it’s not bleeding, we feel you can be discharged today but you will need to come back later to get it taken care of “
The discharge instructions were that I see my own cardiovascular surgeon (I actually have one) ASAP.

The next day I meet with him and they did a sonogram and he came into the room and said that he didn’t see anything,” see you next year!” I said “wait a minute, could it burst?” He said “it could but we have ways to take care of that”

I thought about how quickly things could go bad if it burst and nobody is around. I was previously told that it would probably be fatal if not addressed quick enough.

For 2 years my cardiovascular surgeon acknowledged I had one and now he says that he didn’t see anything.
2 hospital cardiovascular surgeons saw it but my guy all of a sudden says that he didn’t see anything? And tells me to come back in a year??

If he didn’t see anything why is he acknowledging that it could burst. It’s a torn aneurysm for crying out loud!

He was clearly annoyed by my being in his office while he had patients that had earlier made appointments. He rushed out of the room and I got out to follow the arrows on the floor leading me to the (rude) secretary’s desk.

She’s the one that said “where’s your mask?” as soon as I walked into the lobby. I had forgotten to bring my mask that was required then.

She gave me an unfriendly stare and handed me a mask. (I always wear one for doctors visits as they were still required at that time and because I had had covid months ago and am now covid free). That was it, “see you next year “ why would he say that if he said he didn’t see anything? I don’t have any pain so does that mean I don’t have it? I also have another cardiovascular doctor. He’s a cardiologist and I don’t know if he deals with aneurysms.

REPLY

Thanks Teresa, yes they do, but when we called they said that they were not in our network, so feel the insurance company is touting doctors that may have at one time been in the network but are no longer. They are supposed to update every 6 days so I highly doubt that many left in the previous 6 days. My doctor's office is working up a referral and will find one for us that is in the network so hopefully will hear back soon.
As many others here have said, I feel like a ticking time bomb and while supposed to keep my blood pressure down, how is it possible when the anxiety is through the roof!

REPLY
Please sign in or register to post a reply.