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?

@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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@techchick1025

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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Hi @techchick1025,

I’m sorry to hear your disappointment with Mayo Clinic. You mentioned, "They couldn’t help or even believe me.” and I want to first and foremost tell you that I do understand how you must feel–you are not alone in experiencing the frustration of being "dismissed" by doctors. But, I would be remiss if I didn’t offer an explanation, and more insight regarding debatable diagnoses of conditions like MALS.

It is important to note and understand that most clinicians consider the diagnosis of MALS as controversial. The cause of MALS is still not clear and symptoms persist even after surgical treatment, Due to the lack of clarity, and the fact that it mimics other GI symptoms, MALS is considered to be a diagnosis of exclusion:
– there is no real test to prove the existence of MALS
– every other possibility that might be causing pain must be ruled out before making a clinical diagnosis.
https://www.medscape.com/viewarticle/847153_1
In MALS, the medial arcuate ligament compresses the celiac artery, reducing blood flow to the stomach/intestines; surgery, where the ligament is cut away from the artery, doesn’t always get rid of the pain and symptoms. So, surgeons reason that if compression of this artery was causing the pain and other symptoms, then eliminating the compression should get rid of it – but that is not always the case.

Furthermore, some people have artery compression without the symptoms. Why the same anomaly is harmless for some and debilitating for others remains a mystery.

MALS has become less challenging to treat, since surgical intervention now includes removing the celiac ganglion, which is the mass of nerves in that area (some call it the “solar plexus”) because pressure on the nerves may be causing the abdominal pain. https://pdfs.semanticscholar.org/d6b6/4ec69d1cd3ef5f02036362f960d3b0be0181.pdf

@techchick1025, when you experience pain and digestive issues, you'd hope a trip to the doctor would solve your health woes–but I hope you will also agree that medicine doesn’t have all the answers?
While I’m truly glad you’ve found relief with a diagnosis, I ask you to simply keep in mind that each of us (Connect members) has different causes for the struggles we face. I’m also tagging Mentor @kariulrich for her thoughts about MALS, and to share a few details about the treatment she has received.

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@kanaazpereira

Hi @techchick1025,

I’m sorry to hear your disappointment with Mayo Clinic. You mentioned, "They couldn’t help or even believe me.” and I want to first and foremost tell you that I do understand how you must feel–you are not alone in experiencing the frustration of being "dismissed" by doctors. But, I would be remiss if I didn’t offer an explanation, and more insight regarding debatable diagnoses of conditions like MALS.

It is important to note and understand that most clinicians consider the diagnosis of MALS as controversial. The cause of MALS is still not clear and symptoms persist even after surgical treatment, Due to the lack of clarity, and the fact that it mimics other GI symptoms, MALS is considered to be a diagnosis of exclusion:
– there is no real test to prove the existence of MALS
– every other possibility that might be causing pain must be ruled out before making a clinical diagnosis.
https://www.medscape.com/viewarticle/847153_1
In MALS, the medial arcuate ligament compresses the celiac artery, reducing blood flow to the stomach/intestines; surgery, where the ligament is cut away from the artery, doesn’t always get rid of the pain and symptoms. So, surgeons reason that if compression of this artery was causing the pain and other symptoms, then eliminating the compression should get rid of it – but that is not always the case.

Furthermore, some people have artery compression without the symptoms. Why the same anomaly is harmless for some and debilitating for others remains a mystery.

MALS has become less challenging to treat, since surgical intervention now includes removing the celiac ganglion, which is the mass of nerves in that area (some call it the “solar plexus”) because pressure on the nerves may be causing the abdominal pain. https://pdfs.semanticscholar.org/d6b6/4ec69d1cd3ef5f02036362f960d3b0be0181.pdf

@techchick1025, when you experience pain and digestive issues, you'd hope a trip to the doctor would solve your health woes–but I hope you will also agree that medicine doesn’t have all the answers?
While I’m truly glad you’ve found relief with a diagnosis, I ask you to simply keep in mind that each of us (Connect members) has different causes for the struggles we face. I’m also tagging Mentor @kariulrich for her thoughts about MALS, and to share a few details about the treatment she has received.

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Hi @kanaazpereira

You mention that some people have compression without the symptoms. When I spoke to the vascular surgeon he also mentioned this even going as far as quoting something like if he went out on the street and scanned people 1 in every 100 people will have MALs but show no symptoms. I'm guessing a study has not been done as the cost of scanning a large body of people would be prohibitive, how then do they know there are people with MALs that show no symptoms. They are dismissing MALs as the reason for the pain based on this fact so an explanation of how they draw this conclusion would be much appreciated.

Mark

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@ukmalsman

Hi @kanaazpereira

You mention that some people have compression without the symptoms. When I spoke to the vascular surgeon he also mentioned this even going as far as quoting something like if he went out on the street and scanned people 1 in every 100 people will have MALs but show no symptoms. I'm guessing a study has not been done as the cost of scanning a large body of people would be prohibitive, how then do they know there are people with MALs that show no symptoms. They are dismissing MALs as the reason for the pain based on this fact so an explanation of how they draw this conclusion would be much appreciated.

Mark

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@ukmalsman
I was also told that some people have the syndrome, but no symptoms. This has been found coincidentally when undergoing surgery for something totally unrelated as well as postmortem. Diagnosis can be suspected with an abnormal Doppler ultrasound of the abdomen, showing reduction in flow rate. This can then be confirmed with a CT angio. Unfortunately, my GI doctor did not know how to follow up on my abnormal ultrasound and dismissed it as a false positive. During surgery the celiac nerve plexus may be removed to decrease persistent pain. It does not always work- the nervous system is not easy to understand- there may be a “memory” of pain.

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@ukmalsman

Hi @kanaazpereira

You mention that some people have compression without the symptoms. When I spoke to the vascular surgeon he also mentioned this even going as far as quoting something like if he went out on the street and scanned people 1 in every 100 people will have MALs but show no symptoms. I'm guessing a study has not been done as the cost of scanning a large body of people would be prohibitive, how then do they know there are people with MALs that show no symptoms. They are dismissing MALs as the reason for the pain based on this fact so an explanation of how they draw this conclusion would be much appreciated.

Mark

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Yes, there was a study published in a journal. The researcher studied the celiac artery in many cadavers and concluded that something like 35% had MALs anatomy. Of course there are many limitations with that study such as all participants being deceased. But researchers assert that only 1% of that 35% have Sxs. Research is valuable but can’t prove anything, so we take those stats with a grain of salt.

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Do you know any doctors in Arizona that treat MALS

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Do you know of any doctors in Arizona that treat MALS?

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The MALs Awareness Facebook group has list of MALs docs and location in their files on the top menu item.

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@helenannmarie55

I would buy your books I think I would relate

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Hi @helenannmarie55

If I every get them published I will send you a copy!

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@sclindajanssen

Yes, there was a study published in a journal. The researcher studied the celiac artery in many cadavers and concluded that something like 35% had MALs anatomy. Of course there are many limitations with that study such as all participants being deceased. But researchers assert that only 1% of that 35% have Sxs. Research is valuable but can’t prove anything, so we take those stats with a grain of salt.

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Hi @sclindajanssen and @astaingegerdm

Thanks for the info, I had come across this but didn't want to believe it. Doctors, consultants and surgeons are considered to be some of the smartest people in society, how can such intelligent people base everything on such a study. They would second guess the dead rather than listen to the living! Looking at MALs in dead people has far too many variables for them to even draw a hypothesis. Because of this belief MALs will stay as a condition of exclusion. MALs sufferers worldwide will continue to suffer silently undergoing unnecessary operations and years of diagnostic procedures making it too late to treat when they do finally find the compression. It takes guts to speak out against this like Dr Hsu from Connecticut who I believe is not very popular amongst fellow surgeon because of how he treats MALs. Sometimes it takes a pioneer to push the boundaries of what we know to change how others think. If I could afford to be treated by Dr Hsu I would fly out to America tomorrow. I think it is up to us the sufferers to help with that change in mindset by demanding similar surgery from our surgeons, it seems that the earlier the treatment with extensive cutting back of the ligament and Nerve bundle the better the prognosis.

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@ukmalsman

Hi @sclindajanssen and @astaingegerdm

Thanks for the info, I had come across this but didn't want to believe it. Doctors, consultants and surgeons are considered to be some of the smartest people in society, how can such intelligent people base everything on such a study. They would second guess the dead rather than listen to the living! Looking at MALs in dead people has far too many variables for them to even draw a hypothesis. Because of this belief MALs will stay as a condition of exclusion. MALs sufferers worldwide will continue to suffer silently undergoing unnecessary operations and years of diagnostic procedures making it too late to treat when they do finally find the compression. It takes guts to speak out against this like Dr Hsu from Connecticut who I believe is not very popular amongst fellow surgeon because of how he treats MALs. Sometimes it takes a pioneer to push the boundaries of what we know to change how others think. If I could afford to be treated by Dr Hsu I would fly out to America tomorrow. I think it is up to us the sufferers to help with that change in mindset by demanding similar surgery from our surgeons, it seems that the earlier the treatment with extensive cutting back of the ligament and Nerve bundle the better the prognosis.

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Your words are profound and spot on! Thank you

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