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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

@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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@103196

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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Hi @103196 LionessCA

The first thing you need to do is confirm that you have MALs so ask your primary or consultant for an angiogram. In your case I would suggest they do your whole torso from the pelvis up. There may be more going on with the swelling. Tell the consultant to make a note about looking for MALs so the radiographer actually looks for it. I'm guessing here, but with the amount of testing you have had they probably have done one but the Radiographer may have missed it.

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@ukmalsman

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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@ukmalsman hi thank you for your response… I live in Nashville. I have just reached out again today for the second time to my gastroenterologist. Asking that they do a specific ultrasound test for the MALS.
My doctors have all been very ‘sympathetic’… some even calling me at 7-8-9 o’clock at night just to let me know that they have reviewed my tests, are so sorry but they have looked at my films over and over and over and they are dumbfounded and just have no explanation for me. They are always very apologetic. They say they know that something is wrong but they do not see anything on the films showing them a cause for my issues.

Still, all the sympathy in the world doesn’t help me.

Although my PCP has personally witnessed my stomach issues, still he does not know what to do...Except to send me to specialist doctors. And I understand that. At least he does that. My PCP before him had me come back for bloodwork every three months for two years before I finally just broke down and lost my mind in his office and begged him to please not make me come back after three months because I could not handle the pain for three more months before doing just another round of bloodwork.
After that I found another PCP who has at least made the effort to find good specialists for me to see.
But You just think that somewhere at some point somebody would recognize this and know what’s causing it.

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@bachsmom

@ukmalsman hi thank you for your response… I live in Nashville. I have just reached out again today for the second time to my gastroenterologist. Asking that they do a specific ultrasound test for the MALS.
My doctors have all been very ‘sympathetic’… some even calling me at 7-8-9 o’clock at night just to let me know that they have reviewed my tests, are so sorry but they have looked at my films over and over and over and they are dumbfounded and just have no explanation for me. They are always very apologetic. They say they know that something is wrong but they do not see anything on the films showing them a cause for my issues.

Still, all the sympathy in the world doesn’t help me.

Although my PCP has personally witnessed my stomach issues, still he does not know what to do...Except to send me to specialist doctors. And I understand that. At least he does that. My PCP before him had me come back for bloodwork every three months for two years before I finally just broke down and lost my mind in his office and begged him to please not make me come back after three months because I could not handle the pain for three more months before doing just another round of bloodwork.
After that I found another PCP who has at least made the effort to find good specialists for me to see.
But You just think that somewhere at some point somebody would recognize this and know what’s causing it.

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Hi @bachsmom Keep going and don't give up. there are so many inspiring stories on here where someone has gone through the mill like you, but persevered. I had the same issue, many many years of test and nothing. I began to feel the consultants thought it was in my head, even I questioned myself, but I knew it couldn't be because it was just too painful. I even got to the final stage with the consultants whereby they were going to discharge me back to my primary and have the pain specialist fit a spinal chord stimulator. If I would have agreed I would have never found out I had MALs. I turned down the offer telling them I wanted to exhaust every possible avenue.

I understand your urgency, I would give @dave06351 a message, an earlier post he mentioned he has actually spoken to Dr Hsu from Connecticut and could probably guide you further. Maybe @dave06351 could give us a brief on what Dr Hsu said and an update on his condition.

All the best,
Mark

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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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I'm sorry to learn that you were in so much pain, @ukmalsman; may I ask if there's anything you could share about how you coped and managed the pain? I'm glad to see you back on Connect.

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@kanaazpereira

I'm sorry to learn that you were in so much pain, @ukmalsman; may I ask if there's anything you could share about how you coped and managed the pain? I'm glad to see you back on Connect.

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Hi @kanaazpereira

I'm glad to be back, it helps to help others in the same situation. I think all MALs sufferers have a strong spirit of mind. If you think about it, the severity of the pain is like being tortured every single day. I say to my friends it's like being in the Sigourney Weaver movie Aliens, as it feels like one of those monsters is trying to pop out of my chest! No matter how bad it gets I know that at some point there will be a lull where the pain will eases enough for me to do things. It's a battle of wills, pain v mental well-being; if you let the pain win your mental health takes a beating so I find things that amuse me, make me smile or LOL. My friends know when I'm out of action because they don't hear from me, they kindly allow me to rest but send me jokes, funny pictures and videos to amuse me. When I am curled up in the foetal position because of the pain a funny picture from a friend can take your mind off the dire situation.

Also being prepared is a given. I have everything I need by my bed, water, books and I basically live on jelly babies and licorice allsorts. I always think to myself this body belongs to me and not to the pain; the pain may take away my freedom, but it will never have my liberty!

Mark

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@bachsmom

@ukmalsman hi thank you for your response… I live in Nashville. I have just reached out again today for the second time to my gastroenterologist. Asking that they do a specific ultrasound test for the MALS.
My doctors have all been very ‘sympathetic’… some even calling me at 7-8-9 o’clock at night just to let me know that they have reviewed my tests, are so sorry but they have looked at my films over and over and over and they are dumbfounded and just have no explanation for me. They are always very apologetic. They say they know that something is wrong but they do not see anything on the films showing them a cause for my issues.

Still, all the sympathy in the world doesn’t help me.

Although my PCP has personally witnessed my stomach issues, still he does not know what to do...Except to send me to specialist doctors. And I understand that. At least he does that. My PCP before him had me come back for bloodwork every three months for two years before I finally just broke down and lost my mind in his office and begged him to please not make me come back after three months because I could not handle the pain for three more months before doing just another round of bloodwork.
After that I found another PCP who has at least made the effort to find good specialists for me to see.
But You just think that somewhere at some point somebody would recognize this and know what’s causing it.

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My situation may be different as for the cause. Bachsmom, did you sustain any injuries before all this happened?

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Hi-
I’ve been through almost every level of gastric testing to diagnose the pain in my right upper quadrant including a diagnostic laparoscopy that resulted in a removed appendix. Two years worth of pin, hospital visits and testing. Who would you recommend connecting with at the Mayo Clinic? The symptoms of MALS seem so similar to what I’m suffering with and I was diagnosed with gastroperisi as a teenager. I’m looking for any help or advice.

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Don’t go to MAYO. They couldn’t help or even believe me. Get all test results and contact DR Hsu in Connecticut. He’s the expert.

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