Median Arcuate Ligament Syndrome (MALS)

I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?

I am a 52 year old male and I have diarrhea with nausea almost everday of my life. I have tested for many things but I just could never get relief. I somewhat learned to deal with the diarrhea by taking questran every morning before eating anything for 2 hours. If not I would get diarrhea within 10 minutes of eating my first meal everyday. I also get spells of severe abdominal pain with my stomach right in the middle under my ribs being ultra sore. I was recently hospitalized and they were thinking pancreatitis but they did a ct scan and found 75 percent stenosis of my celiac trunk artery. They say it is from vasculitis but the the ct scan clearly shows my ligament that attaches to my diaphragm is rapped around my celiac artery. The artery is only 2mm in dia now but the artery just past the ligament is 6.5 mm. It hurts almost all the time now but especially when I exhale. They want me to see a rheumatologist for treatment of vasculitis but I feel I actually have Mals syndrome. Here is a picture of my celiac artery.

Hi @jpol and welcome to Connect. Those symptoms must be awful. You may have noticed I moved your post to this existing discussion on MALS so that you can connect with others who have experience with this and os that you can learn what they have had to say.

I wanted to introduce you to fellow Connect members @kariulrich and @jbdforisu as they have experience with this and you may be able to provide support for eachother.

Back to you @jpol have you mentioned to your doctor that you think it is MALS as opposed to vasculitis?

@ethanmcconkey

Hi @jpol and welcome to Connect. Those symptoms must be awful. You may have noticed I moved your post to this existing discussion on MALS so that you can connect with others who have experience with this and os that you can learn what they have had to say.

I wanted to introduce you to fellow Connect members @kariulrich and @jbdforisu as they have experience with this and you may be able to provide support for eachother.

Back to you @jpol have you mentioned to your doctor that you think it is MALS as opposed to vasculitis?

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Not yet, I am going to monday

@jpol

Not yet, I am going to monday

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Can I put my pictures back or no.

@jpol

Can I put my pictures back or no.

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I see they are still there just before my original post

I have one strange difference from most people with Mals. I have not lost weight. And when I have pain, i have an overwhelming feeling of hunger and wanting to eat more even though just causes more pain. I currently weigh 300 lbs and am 6' 6" tall.

I have been to see many drs and been to the er with this numerous times. After a while they all seem to think I was making this all up and it was all in my head. It's frustrating to say the least. One thing that gets me relief is to get in the fetal position if you can imagine a 300 lb man doing that. Lol

I dont know if it matters but I am also diabetic

@jpol

I have been to see many drs and been to the er with this numerous times. After a while they all seem to think I was making this all up and it was all in my head. It's frustrating to say the least. One thing that gets me relief is to get in the fetal position if you can imagine a 300 lb man doing that. Lol

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Don’t give up-keep going and

@jpol

I have one strange difference from most people with Mals. I have not lost weight. And when I have pain, i have an overwhelming feeling of hunger and wanting to eat more even though just causes more pain. I currently weigh 300 lbs and am 6' 6" tall.

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@jpol
I didn’t lose weight either. I did not eat much, but preferred carbs, easier to digest. Also, I had an autoimmune GI illness at the same time- not diagnosed at that time either.

Another thing is this time I had this flareup, I have enlaged glands like I have the mumps. and I also have pain in my testicles. Anybody else have these symptoms. I had this about 10 years ago also

For other people with mals, does it hurt to exhale very deeply. I notice that i inhale fine but I baby the exhale and never exhale all the way. Every once in a while I have to blow air in order to get enough air or I get out of beeath.

@dwp60

Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I was diagnosed with two small PEs in my left lung. During a follow up CT Scan I was told I have MALs. I’m just starting this journey and have not been able to eat much as well as extreme fatigue and constantly going back and forth to the hospital. I have an upper aortic aneurysm as well as irregular heart beat. I’m not sure what all is going on but I was told my body is deconditioned. I started trying ensure to see if it would help with my lack of eating and the pain in my stomach after I eat. It has not helped. I feel hopeless because so many things seem to be going wrong for me right now. I live in Maryland and will be seeing a Vascular Surgeon very soon. My gastrologist is sending me to Johns Hopkins to meet with a surgeon. He did tell me this was extremely rare.

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Go on Facebook to the MALSGroup. There’s lots of info on mals and doctors

@sciograndma

Where did you get all of those tests done? I have been very ill, and continue to get worse. Have lost an enormous amount of weight. ( Averaging 20 pounds per 21/2 months!) we live out in the boonies…far from good medical care!! I am praying to get a referral to Cleveland Clinic right away! Sure hoping it isn't too late for them to find out what is wrong and be able to help me!! Not sure there is going to be any coming back from whatever is wrong!!

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I had my tests done at a hospital in Toledo. Twenty pounds is a significant amount to lose in such a short time! What is the hold up with the referral to Cleveland Clinic? How much weight do you have to lose before they do something? I’m not a pushy person by nature but, when it comes to my health, I’ve had to learn to be. By the way, Cleveland Clinic has a service where they will review your case for a fee of about $550. You have to get your records, tests, imaging studies, etc., to them and they give you their opinion. Be persistent and don’t give up.

@dwp60

Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I was diagnosed with two small PEs in my left lung. During a follow up CT Scan I was told I have MALs. I’m just starting this journey and have not been able to eat much as well as extreme fatigue and constantly going back and forth to the hospital. I have an upper aortic aneurysm as well as irregular heart beat. I’m not sure what all is going on but I was told my body is deconditioned. I started trying ensure to see if it would help with my lack of eating and the pain in my stomach after I eat. It has not helped. I feel hopeless because so many things seem to be going wrong for me right now. I live in Maryland and will be seeing a Vascular Surgeon very soon. My gastrologist is sending me to Johns Hopkins to meet with a surgeon. He did tell me this was extremely rare.

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Welcome, @dwp60, You are going through a challenging time medically, you have a lot of diagnosis happening at once. Take this one moment at a time. It sounds like you are on the right track and your physicians are on top of things. Eating is a challenge with MALS and put on top of that PEs, aneurysm and heart irregularities I can understand your feeling of hopelessness. Out of curiosity have you had any past medical history, connective tissue wise? I do wonder if all these are related or not.

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