Celiac Artery Dissection (CAD)

@andytheman

Yes, I completely agree with this. When something seems not right witht the doctor providing you care, get a second opinion. If possible seek care at a tertiary, academic center that has more unusual and complex cases referred to them. When this happens, the doctor gains more special real life experience than other places which would see less unusual cases and not have the exerience to handle them. I would add that ultrasound is good for screening and follow up, but a high quality CT angiogram will usually provide the best evaluation of blood vessels and establish a strong baseline for treatment or followup.

@fabiof

Salve Fabio,

I have not had any genetic testing and have no known connective tissue disease. Since you seem to be interested in a genetic link, I have a family background from Italy as well, mostly in the Tuscan region near the town of Pistoia.

I had not been formally diagnosed with mesenteritis but the superior mesenteric artery which runs in the small bowel mesentery is adjacent to the celiac a. when they both arise from the abdominal aorta.

When my gallbladder attack occurred, I initially and regretfully ignored treatment. I was experiencing episodes of significant pain which I thought was maybe a stomach ulcer as I was going through a personal stressful situation. I eventually sought care and had a CT scan, which showed an inflammed contracted gallbladder with stones, and mild inflammatory stranding around the head of my pancreas and the adjacent celiac artery. Looking back the celiac vessel was very mildly dilated at that time but not enough to be noted on the inital CT. My blood work showed that I had mild pancreatisitis too. its not unusual for gallstones when passing through the bile duct which goes through to pancreatic head to cause inflammation of the pancreas. After my gallbladder was removed, I felt great. I believe the inflammation from the gallbladder inflammed the celiac. artery at that time and weakened it.

But had another CT scan of my abdomen for another reason about 6+ years ago which showed the dissection and aneurysmal dilation which has been stable since on follow up imaging. The story is longer than this for the discovery and diagnosis, but thats pretty much what happened. as an FYI was best detected and evaluated on a CT angiogram study as dissections can be difficult to see on routine CT abdomen . Again I have been subsequently followed by Doppler US to avoid radiation dose and IV dye/contrast administration. I am asymptomatic and pretty healthy otherwise except for high cholesterol which I am taking medication for which is necessary to help prevent further progression.

I get followed for this at Nortwestern University Hospital in Chicago, Mark Eskandari MD Chief of Vascular Surgery, I am very comfortable with his assessement and care, very professional.

@mjpisa
Hi, thank you so much for your reply.
I'm also originally from Tuscany.
I'm shortly awaiting the results of the genetic tests for connective tissue problems, having previously had alpha-1 antitrypsin deficiency, which isn't good.
Given what happened to you, perhaps it could be caused by inflammation of the gallbladder, just like yours. I could be dealing with this mesenteritis, which I've still had in a mild form since the first diagnosis in June 2024. Perhaps it's caused by the genetic disease or something else that has weakened the arteries.

Thanks for the vascular reference.

In my case, too, they've had incorrect reports a couple of times on the MRIs, and thanks to a radiologist I accidentally contacted who discovered the problems, but for months I went on as if I had nothing. Maybe I would have just disappeared!

The great thing is that when you do tests and visits to different hospitals, everyone shoots at random...

Good luck!
Fabio

@mjpisa we have 2 such hospitals in my state and actually they are the number 1 in the nation and the other one is number 2 so I will check their reviews and pick one. Both have academic connections with Brown University and specialize in those aneurysm and artery aneurysms. I will be looking into what they have to offer. It appears they both have expertise in this area.

I picked the number 1 hospital in the country right in RI affiliated with the Brown University Norman Prince Spine Center. Unfortunately the same neurosurgeon is affiliated with the same hospital and University. I can’t find a decent doctor as the top ten are all affiliated with the hospital, the Brown University and Lifespan hospital as they all have admitting privileges at the top hospital group. My aneurysm is being monitored by my Cardiovascular surgeon who also is part of this group. BTW I had my gallbladder removed years ago so that’s not an issue.

I have an aortic artery aneurysm which has a tear in it and I’m on a blood thinner for my mechanical aortic heart valve so that’s not good. I also have a fractured spine at the L1 level which is the lowest vertebrae in the spine and I don’t know what to do anymore. Every doctor is connected because I went for the best so I’m working with my PCP as the hub. I hope my torn aneurysm doesn’t burst and my Coumadin keeps my blood from getting too thin as it would be easy for thin blood to pass through the tear. So I have one of the best neurosurgeons and one of the best cardiovascular surgeon and my blood pressure has been around 197/93 stage 2 hypertension so if you add the high pressure and the torn aneurysm together you have a chance to see how it could turn out. It could burst and it’s usually fatal or my mechanical heart valve could develop a clot and kill me or the clot can cause what they call “ brain bleed” then I would have a stroke from a blood clot in the brain. So it’s almost like I’m waiting to die from any one of these. I have many doctor appointments coming up so I hope they can get their act together and keep me alive. It’s scary. I contacted my cardiologist and he doubled up on my metropolol from 50 mg to 100 mg and I noticed that my BP has come down to elevated but stage 1 but today is the first time I take it. Wish me luck. Thanks

I too ended up in the ER for a sharp abdominal pain on my left side mostly and my upper central abdominal. 2 different reasons. A CT scanner showed I have a hematomas from my self-injecting shots for leveling up my blood thinner level.

It was way too low and it was in danger of having a stroke or heart attack from a blood clot as my blood was too thick and taking a long time to clot.

So these injections were added to my Coumadin. The hematoma formed as a result. I was bleeding in my abdomen.

Nothing they can do about that because it’s basically an internal bruise. Hard and very painful.

While there the CT scan showed that I had a torn celiac artery aneurysm. I knew about it from my yearly sonograms and for 3 years I was told by my cardiovascular surgeon that it wasn’t growing.

The hospital I went to said “you need to go to another hospital for emergency surgery” so they packed it up and put me into a big ER on wheels and off I went and the trauma hospital.

Long story short the surgeon acknowledged the tear and said that because it wasn’t bleeding there was “no need to admit you into the hospital tonight but you will need to come back to the hospital “

“See your cardiovascular surgeon ASAP first” I called him and I was told “we have an appointment set up for your yearly sonogram and I’ll see you in March” ( 3 months away!)!

I insisted that that was not acceptable and “I need to see you ASAP”. “All hospitals say that” (ASAP). and he finally caved in and we made an appointment for 2 days. He was literally annoyed by my insistence!

When I got there I had forgotten to bring my mask and halfway through the door she stopped me and rudely said “don’t you live in an assisted living facility? I said “yeah “ and she scolded me by yelling out that “shame on them for sending you here without a mask !”

I have 3 but just forgot to grab one. After filling out some paperwork a man came out and it was the sonogram guy. He did a sonogram and then I went into an exam room and my doctor came in and was making light of my issue the whole time I was there.

“We didn’t see any tears in your aneurysm” and I said that 2 surgeons seen it and you didn’t see any?” That’s when I said “could it bleed or burst?”
“It could but don’t worry about it, it’s no big deal”

He said that “we have treatment plans for a burst or bleeding aneurysm! “I’ll see you next year!” and walked out of the room.

I made next year’s appointment and walked out feeling like I’m a walking time bomb. It could burst he said but I know that a burst or bleeding aneurysm is an emergency and needs quick treatment. They are usually fatal in many cases.

This nutty doctor was annoyed clearly that I messed up his day with other patients and now I think I should get a second or third opinion. My insurance company said they had a list that I can pick from and my PCP was absolutely of no help as his answer was “ your cardiovascular Surgeon knows you better than anyone else”.
And we left it at that as I was on the phone and he rushed me off to attend to his other patients.

Am I being a hypochondriac or is a second opinion warranted?
I feel like I just got blown off by both doctors and I’m not one to whine.

OK, I’m really new here. I’m a 56 year-old female that was just diagnosed with celiac artery dissection. Treatment is being delayed on that at this time other than cholesterol medication because during the angiogram they found I had a pulmonary embolism in my right lung. I feel lucky to be above ground right now very scared and very confused. I feel blessed they chose to keep me in the hospital and find anything as they kept saying I “did not fit the profile“ but here I am. I have noticed much activity at all brings back the pain and difficulty to breathing. Exactly how rare is this thing? Thank you for any advice anybody has! Blessings