Connect
Celiac Artery Aneurysm: Anyone else with same illness?
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
Like
Helpful
HugInterested in more discussions like this? Go to the Aortic Aneurysms Support Group.
Connect
The vascular team at mayo told me every two years for CTs, mine hasnt grown at all. I also have blood clots on the back side which is actually a good thing. Its been 5 years and mine hasnt changed at all.
Right rib for me, and they said it might very well be it. Also tbe liver is there and it could be tje liver. If i lay on my right side i feel it often.
My pain in under near the bottom of my left rib and between. Like a pulling pain feeling.. Also mine is above 1.4 last ct scan said 2 cm .... Tuesday I'm probably going to just walk in the er of a heart hospital I found in my city... Its pathetic how they expect us to live and deal with this issue
It would be good to find vascular surgeons who have actually performed the operation. I live in the L.A. area and have consulted a surgeon at UCLA but he has never done one. During my first visit about 4 years ago he told me to monitor it with CT scans and we could consider a coil stent or a more invasive surgery if and when it grows to 1.4cm. I haven't met with him since then but when I had a follow up CT he read the results and emailed me. He said that it wasn't growing and I should continue to monitor but he didn't believe that I would ever need repair. I haven't received any advice about things I should be doing prophetically and was never told to avoid lifting weight of any type.
Perhaps collectively we can all develop a consistent strategy of how and what to do while waiting as well as symptoms we may experience while waiting.
My pain is under right ribs. They say the same thing about it... Not related. I don't believe them.
Many people have that pain under the left rib I don’t understand what it is. I don’t tell doctors about it anymore because they make me feel like it is in my head.
Yep, 11 mm, not cm, which is much larger. When I asked the vascular surgeon if he had ever done the operation, and he said "no",, but I can't find you someone here who probably has. Not risking that. If the CT in 6 months shows that it is larger, I have a connection at UT Southwestern in Dallas, & they have about 12 vascular surgeons. I won't trust any dr here in Wichita Falls for anything! Our doctors are pathetic.I do keep having pain under my bottom left ri, but the dr said that's not where the aneurysm is located. Don't even know if he knows what he's talking about.Sometimes I wish I lived in a larger city. Dallas is 3 hrs away & OK City is too.
That is an unpleasant way to live and I agree that the rarity of the condition contributes to medical intervention inconsistencies. Sit , wait and monitor isn't very satisfying. I had never heard that lifting weight is an issue. Is your pain under your ribs? Are you also having persistent digestive issues? 3 tenths of a cm seems minute and I wonder why Doctors would suggest waiting in view of the difficulty you are having.
I think the problem is celiac aneurysm is so rare. I explained thr pain I have ans the dr told me theyre not supposed to hurt.. I then said .. Really? I didnt get the owners manual didnt know you had one.. Like seriously so few have popped up since 1745 no one honestly knows anything.. I get compared to having a AAA so much and there so different. And yes all they want to do is wait. Go home dont lift over 20 lbs. I now work like 3 days a week for 3 hrs a day . I get pain all the time and am tired a lot. Ive read about someone in my same case. No lifting and wait wait wait for 4 years..like really? Mine is 3 tenths of a cm off of when they recommend the operation.... 3 tenths .. The condition and how your treated is sickening
So sorry to hear this. My prayers are with you!