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 group.

@challengergt

Well, it was an informative appointment! Learned that 7 years ago a CT showed it was still 14 mm the same size! Seems my doctors did not have the time to look at my other CT's to check or let me know I had one?? Nothing like worrying having an emergency repeat CT done waiting to be seen about it for over a month to be told Oh it is the same nothing to worry about probably never be a concern for you!! Then when I asked what about my possible Heart attack 2 weeks ago and all my chest pain I am having? I was then told I don't do this you need to see a Cardiologist for your heart. As I was sitting there in chest pain I looked at him and said I just drove 100 mils to hear this? I need to see one before I leave being I am in a Hospital full of them in this floor?? See I have been blown off so many times I am holding my ground it is not funny to me it is my life I am dealing with. So now I get to drive 100 miles one way Monday to see one. A nurse checked me out and told me how to use the Nitro Pills I have at home? I will update this siter how this goes on Monday I do so worry there taking so long to help me it may be too late. I have had 4 chest crushing pain events and 1 event that I could not get off the floor for about 1 hour a few weeks ago! I am scared and just want answers on what is going on and what I can do about it.

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What is it you have that's 14mm? I so hope you get the help and treatment you need.

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@marigail13

What is it you have that's 14mm? I so hope you get the help and treatment you need.

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My Celiac Artery is 14mm should be 7mm but there saying not big enough to fix yet. Seeing a Cardiologist Doctor tomorrow about all this.

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Well, The Cardiologist has done all kinds of Blood Tests, X-Ray and physical exam too. Prescribed Amlodipine at a low dose first for a start to see if it helps. Agrees on me stopping all the Meds and figuring what the problem is. Testing Adrenal Gland and other things. It is a start others have not done yet. Now waiting to see/hear results. More updates as they come in.

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Hello @challengergt

I'm so happy that you posted the update after your appointment, This cardiologist appears to be proactively working on your behalf. I'm sure that you feel more confident in finding a solution.

I'll look forward to reading more updates as you go through this process. Do you have any scans or other tests scheduled?

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@hopeful33250

Hello @challengergt

I'm so happy that you posted the update after your appointment, This cardiologist appears to be proactively working on your behalf. I'm sure that you feel more confident in finding a solution.

I'll look forward to reading more updates as you go through this process. Do you have any scans or other tests scheduled?

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OK Got my Chest X-Ray, Blood Tests, EKG, Thyroid Test ect back. There all great no highs or off charts but one. In fact, my GFR is better was 43 Stage 3B for a long time now above 60 normal. Kidneys are happy not on 10 drugs anymore! This is great news on my Kidneys!! But my Thyroid Level is High "TSH 7.07 u[iU]/mL" and I need to look into that. Cholesterol is perfect so my diet is great and 22% Body Fat. Waiting on one more Adrenal Gland Test any time now. I will keep you informed on how this is all going.

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@challengergt

OK Got my Chest X-Ray, Blood Tests, EKG, Thyroid Test ect back. There all great no highs or off charts but one. In fact, my GFR is better was 43 Stage 3B for a long time now above 60 normal. Kidneys are happy not on 10 drugs anymore! This is great news on my Kidneys!! But my Thyroid Level is High "TSH 7.07 u[iU]/mL" and I need to look into that. Cholesterol is perfect so my diet is great and 22% Body Fat. Waiting on one more Adrenal Gland Test any time now. I will keep you informed on how this is all going.

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You are making progress, @challengergt. You are ruling out some causes and coming up with others.

I look forward to hearing about your continued discoveries!

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My Stress Test will be soon and that one will tell them a lot. I read about one and probably won't pass it since I have a hard time walking up hill without pain and my heart rate, BP getting high. Stairs wipe me out fast, so this is what they need to see.

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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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@colleenyoung

Hi @bdickinson666 and welcome. That must be a frightening situation to face at only 49. You may find this journal article of some help.
– Celiac Arterial Aneurysms: A Critical Reappraisal of a Rare Entity https://jamanetwork.com/journals/jamasurgery/fullarticle/212580

Have you been referred to specialist for surgical consult?

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@colleenyoung I was recently diagnosed with CAA, 1.9×1.9×2.1 cm, so I am also right at the surgery/wait border also. The condition is still very rare, but…

The good news is there are more recent studies, and that non-invasive surgery is being used increasingly. I will post the links once I finish going through the archives here.

Best to all,

David

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@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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Hello @dan1230 and welcome! It sounds as if you have had a lot of problems that cause discomfort and pain. As you wrote, Mayo Connect is a good place to know that you are not alone with these health issues.

I understand that your surgery is scheduled for October. Are there meds that have been prescribed to help you during this time? Have the meds been of any help? I found an article on Mayo Clinic's website regarding vasculitis. Here is a link to that article, https://www.mayoclinic.org/diseases-conditions/vasculitis/diagnosis-treatment/drc-20363485

Have you heard back from Mayo Clinic about a second opinion?

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@10david4911

@colleenyoung I was recently diagnosed with CAA, 1.9×1.9×2.1 cm, so I am also right at the surgery/wait border also. The condition is still very rare, but…

The good news is there are more recent studies, and that non-invasive surgery is being used increasingly. I will post the links once I finish going through the archives here.

Best to all,

David

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Hello @10david4911 and welcome to Connect. I'm glad to see that you are doing some research on less invasive surgeries and I'm looking forward to seeing that information.

You mentioned that this is a recent diagnosis for you. What type of symptoms were you having that led to the diagnosis? Has your doctor discussed these less invasive surgical procedures?

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@challengergt

My Stress Test will be soon and that one will tell them a lot. I read about one and probably won't pass it since I have a hard time walking up hill without pain and my heart rate, BP getting high. Stairs wipe me out fast, so this is what they need to see.

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Hello @challengergt,

I see that you posted a couple of months ago about having a stress test. I hope that test gave your medical team additional information in order to develop a treatment plan.

I'd like to know how you are doing. Will you post an update?

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