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.

I have a 14mm celiac artery aneurysm on a 7mm artery and found by a CT I have Gastropareses also and GERD I was on Prilosec for about 10 years way to long! Was going to have the Wrap to solve it but a snowstorm happen and it got put off. I was told I could get off the Prilosec after the operation. So, I decided to do it ahead of time since over the 10-year period I had been on way too many drugs that were not fixing anything? My GERD got under control once off the Prilosec so I stopped the operation since they said it may not work and could cause more problems. I am pretty upset about all the wrong things done to me over the years like being treated for COPD and not having it. On 3 inhalers till I was so sick I gave up and quit all my drugs and then got a lot better. Doctors are not happy with me but I feel the same about them right now. This Gastric problem was so bad with all the Small Intestine Bacterial growth's and just more antibiotics to solve it. Those have gone away now I breath so much better, but the chest pain is still there? I use Lidocaine for it and swallow it sometimes 3 times a day for the pain. I got off the 7.5 Hydrocodone's 4 times a day they had me on for pain due to all the problems it caused!! I feel the celiac artery aneurysm is the cause of my pain or MAULS just living in a Rural Area I was blown off when they found it and said to dangerous to fix and we will watch it. Then they forgot about it. I have a new doctor I will see doon and a 100% Disabled Veteran with PTSD too so the care I have got on the inside and outside has been substandard to say the least. They have cut a duct on my Pancreases and were surprised I got better so fast but it was because of all the Dreon I was taking that I stopped. It was not needed another drug they were trying. I am scared to have them treat me anymore over all this. Filled a complaint and was told this is how we do stuff to find answers. Well, the celiac artery aneurysm to me may be the whole problem I so not want to wait for it to burst and going to try to have it looked at again by the new doctor. I am 70 years old 5' 5" and 130 lbs I lost 30 lbs in a year once from 150 lbs not eating right. Now off the Prilosec I can eat better just wish they said do that on and how to do it. I started taking the pills apart and making them smaller for many weeks till off them. That worked but cold turkey was horrible to do but this worked without the acid overload. I read a lot on this, and I know it is rare, but the pain is a problem. They have looked inside me both ends many times and see nothing wrong? It is time for the celiac artery aneurysm to be corrected and a real doctor to deal with it that knows what to do. Been a long post but so has my journey to get better! Was hoping to hear those others have gone thru what I have here so I joined. Thanks for any help. Mark

REPLY
@challengergt

I have a 14mm celiac artery aneurysm on a 7mm artery and found by a CT I have Gastropareses also and GERD I was on Prilosec for about 10 years way to long! Was going to have the Wrap to solve it but a snowstorm happen and it got put off. I was told I could get off the Prilosec after the operation. So, I decided to do it ahead of time since over the 10-year period I had been on way too many drugs that were not fixing anything? My GERD got under control once off the Prilosec so I stopped the operation since they said it may not work and could cause more problems. I am pretty upset about all the wrong things done to me over the years like being treated for COPD and not having it. On 3 inhalers till I was so sick I gave up and quit all my drugs and then got a lot better. Doctors are not happy with me but I feel the same about them right now. This Gastric problem was so bad with all the Small Intestine Bacterial growth's and just more antibiotics to solve it. Those have gone away now I breath so much better, but the chest pain is still there? I use Lidocaine for it and swallow it sometimes 3 times a day for the pain. I got off the 7.5 Hydrocodone's 4 times a day they had me on for pain due to all the problems it caused!! I feel the celiac artery aneurysm is the cause of my pain or MAULS just living in a Rural Area I was blown off when they found it and said to dangerous to fix and we will watch it. Then they forgot about it. I have a new doctor I will see doon and a 100% Disabled Veteran with PTSD too so the care I have got on the inside and outside has been substandard to say the least. They have cut a duct on my Pancreases and were surprised I got better so fast but it was because of all the Dreon I was taking that I stopped. It was not needed another drug they were trying. I am scared to have them treat me anymore over all this. Filled a complaint and was told this is how we do stuff to find answers. Well, the celiac artery aneurysm to me may be the whole problem I so not want to wait for it to burst and going to try to have it looked at again by the new doctor. I am 70 years old 5' 5" and 130 lbs I lost 30 lbs in a year once from 150 lbs not eating right. Now off the Prilosec I can eat better just wish they said do that on and how to do it. I started taking the pills apart and making them smaller for many weeks till off them. That worked but cold turkey was horrible to do but this worked without the acid overload. I read a lot on this, and I know it is rare, but the pain is a problem. They have looked inside me both ends many times and see nothing wrong? It is time for the celiac artery aneurysm to be corrected and a real doctor to deal with it that knows what to do. Been a long post but so has my journey to get better! Was hoping to hear those others have gone thru what I have here so I joined. Thanks for any help. Mark

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One thing I left out was I have had what I thought was 4 Heart Attacks and was told later it was GERD? I know what GERD feels like this was the most chest pain I have ever felt in my life! I stayed up for 3 days afraid to sleep and went to the ER 3 times in a row only to be told it was in my head because I felt OK there??? I wonder if the celiac artery aneurysm happen at that time? It was not seen before this and I have had many CTs looking for things before this? I had real good MRIs for the Pancreas problem looking for things, so I find it hard they just missed it. Not sure if getting a celiac artery aneurysm is supposed to be really painful but no other reason for the bad pain was given. This is why I want to know more and have it looked at again. Thanks Again Mark

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Had a scare BP jumped up to 163/120 then 171/111 saw the doctor 2 days later. I have Nitro Pills for the next time. Also dealing with Diabetic problems too that I'm trying to control with my diet. Not sure if those were real high BP but the chest pain was really bad and worried about my Celiac Artery blowing out. There setting me up for another CT to see if it is getting bigger.

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@helenannmarie55

In 2008 a ct showed what several radiologists though was an aneurism in my stomach. One doctor didn’t agree it was an aneurism so he did an angigram and then I was diagnosed with median accurate ligament disease. The doctors would not touch it because it was rare. Last years I had a blocked small intestine, and then was diagnosed with gastroparesis. It is one thing after another with such pain with eating. I am very frustrated that no one will offer to surgically release this artery. Maybe when the appendage attached to this artery bursts someone will do something unless I am gone. It is so frustrating because no one understands.

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I have a 14mm celiac artery aneurysm on a 7mm artery and found by a CT I have Gastropareses also and GERD I was on Prilosec for about 10 years way to long! Was going to have the Wrap to solve it but a snowstorm happen and it got put off. I was told I could get off the Prilosec after the operation. So, I decided to do it ahead of time since over the 10-year period I had been on way too many drugs that were not fixing anything? My GERD got under control once off the Prilosec so I stopped the operation since they said it may not work and could cause more problems. I am pretty upset about all the wrong things done to me over the years like being treated for COPD and not having it. On 3 inhalers till I was so sick I gave up and quit all my drugs and then got a lot better. Doctors are not happy with me but I feel the same about them right now. This Gastric problem was so bad with all the Small Intestine Bacterial growth's and just more antibiotics to solve it. Those have gone away now I breath so much better, but the chest pain is still there? I use Lidocaine for it and swallow it sometimes 3 times a day for the pain. I got off the 7.5 Hydrocodone's 4 times a day they had me on for pain due to all the problems it caused!! I feel the celiac artery aneurysm is the cause of my pain or MAULS just living in a Rural Area I was blown off when they found it and said to dangerous to fix and we will watch it. Then they forgot about it. I have a new doctor I will see doon and a 100% Disabled Veteran with PTSD too so the care I have got on the inside and outside has been substandard to say the least. They have cut a duct on my Pancreases and were surprised I got better so fast but it was because of all the Dreon I was taking that I stopped. It was not needed another drug they were trying. I am scared to have them treat me anymore over all this. Filled a complaint and was told this is how we do stuff to find answers. Well, the celiac artery aneurysm to me may be the whole problem I so not want to wait for it to burst and going to try to have it looked at again by the new doctor. I am 70 years old 5' 5" and 130 lbs I lost 30 lbs in a year once from 150 lbs not eating right. Now off the Prilosec I can eat better just wish they said do that on and how to do it. I started taking the pills apart and making them smaller for many weeks till off them. That worked but cold turkey was horrible to do but this worked without the acid overload. I read a lot on this, and I know it is rare, but the pain is a problem. They have looked inside me both ends many times and see nothing wrong? It is time for the celiac artery aneurysm to be corrected and a real doctor to deal with it that knows what to do. Been a long post but so has my journey to get better! Was hoping to hear those others have gone thru what I have here so I joined. Thanks for any help. Mark

REPLY

I will be seeing a Vascular Surgon April 28th to see what he thinks. He has worked with the Mayo Clinic in the past. Just happens to only be 100 miles from me. I will update what he tells me I need to do. The VA has authorized this to be looked into. Mark

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Celiac is a sneaky autoimmune disease. When your small intestine has its digestive filament ruined you do not digest food and your entire body is in a state of malnutrition. Every part of your body can be effected with no growth potential. It is a very serious disease and they are just now teaching doctors about it. It took me 8 years of pain and body dysfunction to finally have a smart Dr give me the test. The 6 gastroenterologists I have seen only did colonoscopies and all said your ok. None every mentioned Celiac. It is genetic and effects the ability of the entire body to grow new cells and function. Go to the Celiac Foundation web or the Mayo Clinic Celiac Clinic to learn the facts.

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@pwgrimes

Celiac is a sneaky autoimmune disease. When your small intestine has its digestive filament ruined you do not digest food and your entire body is in a state of malnutrition. Every part of your body can be effected with no growth potential. It is a very serious disease and they are just now teaching doctors about it. It took me 8 years of pain and body dysfunction to finally have a smart Dr give me the test. The 6 gastroenterologists I have seen only did colonoscopies and all said your ok. None every mentioned Celiac. It is genetic and effects the ability of the entire body to grow new cells and function. Go to the Celiac Foundation web or the Mayo Clinic Celiac Clinic to learn the facts.

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Hello @pwgrimes,

I found your post to be very informative. Could you share with me the type of test that diagnosed Celiac Disease? Was it a blood test or an upper endoscopy?

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Hi. Since it's been about 6 years how are you doing?

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@challengergt

I will be seeing a Vascular Surgon April 28th to see what he thinks. He has worked with the Mayo Clinic in the past. Just happens to only be 100 miles from me. I will update what he tells me I need to do. The VA has authorized this to be looked into. Mark

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@challengergt

I am glad to hear that you have an upcoming appointment with a vascular surgeon. Seeing this type of specialist should help you in making a decision on how to treat this problem and provide you with the information needed to understand this disorder better. Education is key!

Will you post an update after your appointment on the 28th?

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@hopeful33250

@challengergt

I am glad to hear that you have an upcoming appointment with a vascular surgeon. Seeing this type of specialist should help you in making a decision on how to treat this problem and provide you with the information needed to understand this disorder better. Education is key!

Will you post an update after your appointment on the 28th?

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Yes, I will be hoping they can give me informative information??

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@challengergt

Yes, I will be hoping they can give me informative information??

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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.

REPLY
@pwgrimes

Celiac is a sneaky autoimmune disease. When your small intestine has its digestive filament ruined you do not digest food and your entire body is in a state of malnutrition. Every part of your body can be effected with no growth potential. It is a very serious disease and they are just now teaching doctors about it. It took me 8 years of pain and body dysfunction to finally have a smart Dr give me the test. The 6 gastroenterologists I have seen only did colonoscopies and all said your ok. None every mentioned Celiac. It is genetic and effects the ability of the entire body to grow new cells and function. Go to the Celiac Foundation web or the Mayo Clinic Celiac Clinic to learn the facts.

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I had the double blood test. Also I have the gene. You have to have that for the autoimmune disease. The allergy just gives you a temporary bowel problem. When I look back over my 72 years before the test I see all the symptoms . I always wondered why I had sickly times. I started out with constitution as a very skinny slow growing child. I would be exhausted after any time of exertion. I even had the enamel wear off my teeth. Had to have all crowns at 40. The first major symptom I noticed was the huge bloating like I was pregnant. As a adult I now have osteoporosis, even though I lifted substantial weights for 40 years and no one in my family has it. I have arteriosclerosis and had a 4 inch shunt in my thigh. Then there is peripheral neuropathy as well. I have had pancreatitis, all the doctors said I must be a drinker. And my gallbladder was nothing but a stone when removed. I have extreme Gerd. My digestive system does not work well and my bowel and rectal area do not coordinate. All of these are the result of living with malnutrition and not digesting food for my body and parts to grow and function right. I am one of the 30% who do not get complete relief from Going GF. I do not think I need the small intestine endoscopy to prove I have it. The Celiac leaves patchy areas of the intestine injured and a doctor needs to know the specific spots to get the samples. Since no Dr. I have been to in 11 years knows about the disease I don’t trust their testing. I am now having a very bad and painful time with rectal pain, probably caused by straining to alleviate constipation. I am in bed in pain waiting for an appointment with Colorectal Doctor who knows about anal fissures. They have made me wait 10 weeks and I can’t take pain med. The ER doctor knew nothing about Celiac and could not understand the problems I have. I waited 10 hours for nothing.
If I did not mention the Celiac Foundation web site they know the latest research.

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