Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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?

@kariulrich

I thought it would be fun to share a photo with you all. So to help with my over all well-being I have taken up western pleasure riding lessons once a week. Let preface this with the activity is strenuous and does trigger mals pain- for me exercise brings on pain. I do believe it has to do with my underlying vascular disease along with scar tissue from surgery, however with that comes a great escape from all pain. That one hour on the horse, connecting and learning has been invaluable. Staying active is so difficult when you are malnourished and feeling unwell. I do have times when I have to cancel lessons due to symptoms. And when I miss a week I find that the rest of my week is difficult. Just wondering what activities you all are able to tolerate, what brings you joy and escape from the chronic symptoms?

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Hi Kari, it is great to see you with your horse!!! I haven't been on in awhile. I have been focusing on the dysautonomia and all of that. It is frustrating. However, I am beginning to have my MALS pain again. I did have narrowing again in Aug of the Celiac, but sma was good so we decided to wait and see how it goes since I have all this other stuff going on. I go the end of the month for another scan. I may move it up.UGH!!! Well keep riding, it seems to do good for you because you look great!! Jill

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@jdouglas

I think I am one of the lucky ones. I was diagnosed within 2 months of getting a really bad stomachache. I had terrible pain most of the time, not just after eating. I lost 18 in less than 2 months (from 120 to 102). I have no other issues like celiac or ibs. I am a 60 year old healthy female living in Chicago. My surgery was 2 weeks ago and I could eat the following day. My question is, I’m having a difficult time getting my body to be happy eating again. Can anyone give me advice about how to reintroduce my system to eating? I have bouts of shakiness after eating, stomach cramping, bloating, etc. I have cut out dairy for now and staying away from anything spicy or rich. It seems that one day fiber is okay, then the next day, fiber is a problem. I am fairly weak given the weight loss and am looking for any advice out there. Thank you.

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FOODS TO EAT FOR MALs SUFFERERS

Hi @jdouglas Glad to hear you were lucky with the diagnosis, with hope your symptoms will subside and disappear altogether. I lost 28lbs in a month when I realised food was the cause of the pain. It took another 2 months for me to work out what I could eat. The rule of thumb for me is Anything GREEN BROWN or RED is a no go; all the foods that your digestive system finds hard to digest. So basically most healthy food for me causes severe pain. When you eat these foods the pain doesn't start straight away, they accumulate in your system, that's when the pain gets real bad.

So for a while stay away from
Brown bread, Bran, pulses, potato with skin on etc
Green beans, dark leafy greens especially spinach, kale, chard & collards, sprouts, green vegetables & fruit like peas, asparagus, broccoli, grapes & celery etc, it's the chlorophyll that we can't digest.
Red meat especially BEEF and red vegetables, beetroot, chicory, radishes

It may seem extreme but its does work with the following suggestion,
Pretty much all white foods are safe like cauliflower, parsnip, potato no skin, pasta and easy cook soft white rice. Chicken is great but don't eat whole pieces; make sure it is minced and flake your fish. I never had a problem with spices as long as you lightly spice it.

Ask your doctor to prescribe you something like or Fresubin juice which has a high caloric value, it is fat free, fiber free and lactose and gluten free. Fortisip shakes are another but they do contain lactose and gluten. They are great for increasing your daily calorie count. I would also change to lactose free milk and go for the full fat one. If you are a hot chocolate drinker I suggest Milo; It contains a lot of vitamins and minerals plus it's high in calories too.

I can only eat 1 meal every three or 4 days and even then it's only a breakfast bowl size, but I am a sever case. I have however managed to halt my rapid decline in weight by sticking to the rules above. I would suggest you eat a meal every other day and build it up from there on a fortnightly basis.

I wish you a speedy recovery,

Mark

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@helenannmarie55

I have been diagnosed with MALS for over. 7 years and just recently gastroparsesis. I am having so much pain between my shoulder blades I just can’t take it. This past weekend I took extra strength Tylenol like it was candy. No one can help me. I live in South Dakota. I have an appointment with my gastro doctor on Wednesday. I was dismissed by my vascular dr saying nothing has changed. I get sent away with nothing. I really need help. Who will listen or understand?

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Hi @helenannmarie55
I am right there with you, the pain between the shoulder blades is truly awful. I've not been on this website 3 weeks because I was suffering so much. I also get chest pain, this time I couldn't even let the duvet rest on my chest!
For such severe pain I can only recommend you ask you doctor to prescribe Buprenorphine Transdermal patch, it's what I use. Have they referred you to a pain specialist? Everyone reacts differently to pain meds, the pain specialist will be able to try different methods of controlling your pain, they also perform celiac plexus blocks.

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@103196

I’m not sure how to use this forum I just registered so bear with me. My primary doctor just discovered Median arcuate ligament by accident in a CT scan of my chest. They did a full pelvic to confirm it. He sent me to a few different specialists before I found the right depot and surgeon. I had an appointment today and he said they are ordering a US Abdomen Limited order and a
VL visceral / mesenteric order to rule everything else out.
I’m kinda scared about all this happening so quickly and they are telling me it’s really rare. The symptoms I have had are losing about 30 pounds in a span of 2 1/2 years, some pain and bloating after eating. (but it doesn’t happen all the time, just in blocks of time.) The doctor said he wants to do these tests because even thought I don’t have the pain all the time, it has kinda made me afraid to eat because I want to avoide being uncomfortable. I would like to know if anyone has been in the early stages like this and the symptoms weren’t super crazy bad. I don’t understand how I got this. Is it hereditary? Was I born this way or did it develop on its own? What happens if my symptoms are not that bad? Will it go away? Will it have to be monitored? Any feed back is greatly appreciated.

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Hi @103196 LionessCA
If you have read through the whole post it can be quite daunting and scary to get the diagnosis. The problem most have is what treatment to have or getting heard. There is some research on it but sadly not enough. My early stages were severe Abdominal pain with Gastritis and GERD, there were other symptoms but they were the main ones. I posted a recommendation for food below which you should read. When you see your surgeon make sure you ask about the Celiac Plexus nerve bundle. My theory is that some are born with it, however the ligament can slip down in some people late on in life and start causing problems after a few years. I'm guessing that if you were born with it you were naturally very slim throughout your youth no matter what you ate. The longer you leave it untreated the worse the symptoms will get and by what my surgeon has said the harder it is to treat effectively.

We are all here for you so don't be afraid to ask any question.

Mark

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@annief

Hi 103196, this is a tough diagnosis. I feel for you. Mine was found by accident as well. After running all the usual test for stomach problems, they did a CT w/contrast. That’s when they found the compressed artery as well as a pulmonary embolism. Both unexpected for the symptoms. Also had the Doppler test. Then I spent months researching the condition, options for treatment and finally a surgeon. Debated if I could live with it because I had read about people who were in much worse shape than I was. I was sad and discouraged that I had it. Finally I just could not continue to live that way.

I had the lapriscopic as well. I did not find research regarding how we get it, just that they find this condition postmortem and there were never any symptoms. I did have one general surgeon tell me, my symptoms could go away but I never read anything about that in the articles I found. I waited and waited until I felt like I had had enough and just could not continue to live like that. I am in Dallas and found a vascular surgeon familiar with it and actually he and the hospital have a relationship with the Cleveland Clinic. He pretty much performed the procedure I saw on the CC website. He released the ligament and took care of the nerves as well.

Found lots of good info and encouragement on this website as you can see from the post by sclindajanssen. Someone on this blog also reminded me to not get too discouraged at what you read. Everyone is different and some have other conditions that complicate things. Fortunately I did not have any other vascular problems. I am now 4 weeks post op. I can eat without pain. Now hopefully it is just recovering from a major surgery. Getting my strength back and my digestive system back in sync. Don’t let “lapriscopic” fool you. I had hoped to be back at work by now but I think it will be at least one more week. Hang in there. You will read stories of people who have struggled just to get the right diagnosis so at least you have that done. Take your time if you can, do your reasearch and you will know when the time is right. Will say a prayer for you too.

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Hi @annief

Great post and very encouraging. I've read a good majority of this post and no one has ever mentioned Mental Health. I have been suffering 10 years with the first 3 years barely leaving my home. I will be upfront and say after 5 years of horrendous pain my mental state was very poor. Even with wonderful family and friends it stripped me bare. Not being able to work was the worst for me, missing family weddings and other celebrations just added to the depressive state. It was the fact that I couldn't travel especially in a car which grounded me. People never saw me as depressed because my character is totally different; I can honestly say I was on the edge. I am a natural problem solver and could see where I was heading so endeavored to solve the problem, so I started writing. I've written 3 novels so far and not looked back since. I'm not published in any way, but the research, planning and writing keeps my mind busy and my closest friend loves them. I actually love writing when I am not suffering from brain fog. Back then I was afraid to talk about my mental health with anyone, but it is something that needs to be open. Posting on here has helped tremendously, It was suggested I sign up with MALs PALs on Facebook which I have. But in all honesty I'm probably one of the very few people who doesn't use Facebook, it's a privacy issue! For all those who are suffering in silence, don't be afraid to get involved on either website. I can categorically say they are a good bunch here on the Mayo website.

Thank you all.

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@cjbro

@imalady2 I saw that Grey’s Anatomy episode! Oddly, for the last month or so I have been suffering with some very strange symptoms, including severe, radiating pain just under my sternum, a heavy, overstuffed feeling in my abdomen. and diarrhea. I almost went to ER several times. Then I’m watching that Grey’s episode and, low and behold, they describe my exact symptoms! ((Altho I think they over-simplified the solution based on the surgery and recovery experiences I’m reading here!) I assume a gastroenterologist would be my next step? Or would it be a vascular surgeon?

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Hi @imalady2 Sorry to hear you're having problems. Your first port of call would be a Gastroenterologist, they will want to rule out other causes like your Gallbladder. If you really believe you could be suffering from MALs then read through this post and take note of the doctors that have been suggested. It's just that if you end up with a doctor that that knows little about MALs you will have a lengthy diagnostic process.

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@kariulrich

I thought it would be fun to share a photo with you all. So to help with my over all well-being I have taken up western pleasure riding lessons once a week. Let preface this with the activity is strenuous and does trigger mals pain- for me exercise brings on pain. I do believe it has to do with my underlying vascular disease along with scar tissue from surgery, however with that comes a great escape from all pain. That one hour on the horse, connecting and learning has been invaluable. Staying active is so difficult when you are malnourished and feeling unwell. I do have times when I have to cancel lessons due to symptoms. And when I miss a week I find that the rest of my week is difficult. Just wondering what activities you all are able to tolerate, what brings you joy and escape from the chronic symptoms?

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Hi @kariulrich

A woman after my own heart! I enjoyed horse riding especially as a means of getting around when I traveled to other countries. I would have taken it up if I had not become so ill with MALs, Instead I find my escape in writing novels, to which I can do anything my heart desires!

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@ukmalsman

Hi @helenannmarie55
I am right there with you, the pain between the shoulder blades is truly awful. I've not been on this website 3 weeks because I was suffering so much. I also get chest pain, this time I couldn't even let the duvet rest on my chest!
For such severe pain I can only recommend you ask you doctor to prescribe Buprenorphine Transdermal patch, it's what I use. Have they referred you to a pain specialist? Everyone reacts differently to pain meds, the pain specialist will be able to try different methods of controlling your pain, they also perform celiac plexus blocks.

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No pain specialist yet. Thank you that will be my next step.

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@ukmalsman

Hi @annief

Great post and very encouraging. I've read a good majority of this post and no one has ever mentioned Mental Health. I have been suffering 10 years with the first 3 years barely leaving my home. I will be upfront and say after 5 years of horrendous pain my mental state was very poor. Even with wonderful family and friends it stripped me bare. Not being able to work was the worst for me, missing family weddings and other celebrations just added to the depressive state. It was the fact that I couldn't travel especially in a car which grounded me. People never saw me as depressed because my character is totally different; I can honestly say I was on the edge. I am a natural problem solver and could see where I was heading so endeavored to solve the problem, so I started writing. I've written 3 novels so far and not looked back since. I'm not published in any way, but the research, planning and writing keeps my mind busy and my closest friend loves them. I actually love writing when I am not suffering from brain fog. Back then I was afraid to talk about my mental health with anyone, but it is something that needs to be open. Posting on here has helped tremendously, It was suggested I sign up with MALs PALs on Facebook which I have. But in all honesty I'm probably one of the very few people who doesn't use Facebook, it's a privacy issue! For all those who are suffering in silence, don't be afraid to get involved on either website. I can categorically say they are a good bunch here on the Mayo website.

Thank you all.

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I would buy your books I think I would relate

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Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.

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@ukmalsman

Hi @103196 LionessCA
If you have read through the whole post it can be quite daunting and scary to get the diagnosis. The problem most have is what treatment to have or getting heard. There is some research on it but sadly not enough. My early stages were severe Abdominal pain with Gastritis and GERD, there were other symptoms but they were the main ones. I posted a recommendation for food below which you should read. When you see your surgeon make sure you ask about the Celiac Plexus nerve bundle. My theory is that some are born with it, however the ligament can slip down in some people late on in life and start causing problems after a few years. I'm guessing that if you were born with it you were naturally very slim throughout your youth no matter what you ate. The longer you leave it untreated the worse the symptoms will get and by what my surgeon has said the harder it is to treat effectively.

We are all here for you so don't be afraid to ask any question.

Mark

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Thank you Mark, yes I was very slender growing up and just gained weight when I was pregnant. Now I am down to 108. I haven’t been that weight since high school and I am 50 it is kinda disturbing to me. I will ask about the nerve bundle when I see my surgeon at the beginning of Dec. thank you for all your advice and yes I have many questions and will check in regularly. 🙂

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@bachsmom

Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.

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Hi @bachsmom

I am amazed at the difference and you say your primary has witnessed this. I really can't believe they have not done much to help you. There was a discussion a little earlier between me and @kanaazpereira regarding the diagnosis of MALs (5 Oct 2018). Kanaaz was saying that MALs is a diagnosis of exclusion; basically going through every other known possibilities and even then they sometimes don't consider MALs. MALs is generally stumbled upon or if a primary or consultant is familiar with MALs they will look for it. My diagnosis took ten years and even then it wasn't the gastro consultant who suggested the angiogram it was an immunologist. My argument was that instead of the lengthy process where I and I believe many others had several operations like an appendectomy or cholecystectomy, before they actually look for MALs. A healthy appendix and gall bladder were removed probably for nothing. It would be better for all if after the usual check on the digestive system they then do an angiogram to check the arteries before they start removing organs. You are a severe case and you have time restraints too so don't settle for anything less, you have been through every possible test. Now be specific, ask for a gastroenterologist and one that has dealt with MALs. Look further down this post, @schaepekaren mentioned Dr Hsu from Connecticut is the most noted or look on the MALs PALs Facebook page where they list Consultants around the USA.

Of course we on the Mayo website are here for you. If you say which part of the USA you are in maybe someone reading will be able to suggest a consultant. As for food, look further down at my recommendation Food for MALs sufferers. If you try it eat in small portions and not every day. I can only manage 1 breakfast bowl full every 3 – 4 days, but its better than nothing. If you haven't eaten for a while all the healthy brown, green and red food will be out of your system. Remember anything white is alright! Stay away if it Red, Brown or Green!

Good luck and keep us posted.

Mark

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