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?

@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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My esophagus hurt as well, which is between the shoulder blades and under sternum.
What part of SD? Can you travel to Mayo? Dr Costopolis was my vascular doctor and he referred me to Drs DeMartino and Kendrick. Kendrick did the surgery and knew enough about MALs to also remove part of the celiac ganglion in addition to just cutting the ligament. Dr Hsu from Conneticut is the most noted, renowned, loved surgeon in the country for treating MALs. Probably in the world. You can get his information and how to contact him from Facebook MALs Awareness group. Hope this helps. I’m sorry for your pain and dismissal. I experienced that 3 times and it is still very hurtful. Most MALs pts have had that experience.

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@sclindajanssen

My esophagus hurt as well, which is between the shoulder blades and under sternum.
What part of SD? Can you travel to Mayo? Dr Costopolis was my vascular doctor and he referred me to Drs DeMartino and Kendrick. Kendrick did the surgery and knew enough about MALs to also remove part of the celiac ganglion in addition to just cutting the ligament. Dr Hsu from Conneticut is the most noted, renowned, loved surgeon in the country for treating MALs. Probably in the world. You can get his information and how to contact him from Facebook MALs Awareness group. Hope this helps. I’m sorry for your pain and dismissal. I experienced that 3 times and it is still very hurtful. Most MALs pts have had that experience.

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I am from Sioux Falls I have Sandford insurance and I don’t think they will cover the Mayo Clinic. Thank you Teresa for all your support and information.

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@imalady2

I haven’t-But it’s actually a topic with a patient on Greys Anatomy tonight!
(Season 15, Episode 5@10/25/18)
It was very difficult to diagnose, and the young lady kept being told it was all in her head. I’ve been an RN over 30 years and have never met a patient with it.

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I have it and I’m at a Dr now for it. Saw the show. It’s a rare disorder.

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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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@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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It’s scary to learn about a MALs diagnosis when the artery that is compressed is one that supplies oxygen to all your firm organs needed for digestion. You have many questions, which is exactly how I felt at first as well. I was afraid.
But it sounds like your symptoms are noted early enough to allow for careful, thorough evaluation.
To educate yourself, you may want to join the MALs Awareness Facebook page. I have learned so much from them through the brochures in their files and the discussions. They have a list of MALs docs as well.

They say MALs is a congenital anomalies, meaning a person is born with it but signs and symptoms may not manifest for many years.

Body position and breathing affect compression. Body position of comfort seems different for each person, but many report knees to chest or forward is best. I relieved stomach pain my whole life by laying down on my side with bent hips/knees. Also, compression is worse with expiration.

My symptoms: pain with first bite of food starting in esophagus, then stomach, pancreas, gall bladder. Nausea and early fullness. 20 lb weight loss. Dry hair, nails, muscle and joint pain all were bad but got better after lap surgery and use of acid supplements 1 year ago.
Also many strange issues: lightheaded, pounding heart, low blood pressure, brain fog with speech and auditory processing difficulty (More noticeable to me than other).

My evals: ultrasound of celiac artery with images in inspiration and expiration to measure blood flow velocities. The higher the velocity, the more the compression. CT of abdomen to see actual anatomy.

My coping strategies: very small frequent meals, laying in position of comfort immediately after eating. I tend to take deep breaths and hold to promote blood flow through the celiac artery. Trial error with testing what foods work best. I don’t
have enough stomach acid so can’t digest protein but I take an acid supplement when I eat meat; lots of odd symptoms improved after I started that. Some people don’t tolerate veggies, some can’t eat sugar. Seems to vary greatly. I do not recommend trying acid pills with out guidance of a specialist, which I had. Some people have too much acid. I had tests that suggest mine was low.

Surgery: I had lap surgery with arcuate ligament release and removal of some of the nerves. All symptoms disappeared except stomach acid limitation so I still take an acid pill with meals that include protein.

There seems to be 2 debates with MALs. First is vascular vs nervous systems issue. Many who have ligament release but nerves not addressed continue to have more pain after surgery. Leads docs to consider this as nerve compression issue. I think it’s both. Second, lap vs open surgery. Some with lap have symptoms return later with scar tissue. Dr. Hsu from Connecticut is the most reputable surgeon (maybe arguable for those who disagree with his method) and he removes the ligament all the way to the spine so people do not have symptoms return. I had Dr. Kendrick from Mayo and I feel satisfied with results but still use some of the same coping strategies, maybe out of fear or habit, or need. Not sure why. I avoid sitting where compression is worst for me, even after surgery as it seems to irritate surgical area.

Evaluation/intervention for MALs is a long journey with more questions than answers. I wish I had joined MALs awareness support group before my surgery. I have learned to have patience, educate myself, take 1 day at a time, rest frequently, and take deep breaths to relax and calm myself. It’s challenging but worth the difficulty because the gratitude for health experienced later is the greatest feeling.
My thoughts and prayers are with you!

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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, 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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@imalady2

I haven’t-But it’s actually a topic with a patient on Greys Anatomy tonight!
(Season 15, Episode 5@10/25/18)
It was very difficult to diagnose, and the young lady kept being told it was all in her head. I’ve been an RN over 30 years and have never met a patient with it.

Jump to this post

@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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@sclindajanssen

It’s scary to learn about a MALs diagnosis when the artery that is compressed is one that supplies oxygen to all your firm organs needed for digestion. You have many questions, which is exactly how I felt at first as well. I was afraid.
But it sounds like your symptoms are noted early enough to allow for careful, thorough evaluation.
To educate yourself, you may want to join the MALs Awareness Facebook page. I have learned so much from them through the brochures in their files and the discussions. They have a list of MALs docs as well.

They say MALs is a congenital anomalies, meaning a person is born with it but signs and symptoms may not manifest for many years.

Body position and breathing affect compression. Body position of comfort seems different for each person, but many report knees to chest or forward is best. I relieved stomach pain my whole life by laying down on my side with bent hips/knees. Also, compression is worse with expiration.

My symptoms: pain with first bite of food starting in esophagus, then stomach, pancreas, gall bladder. Nausea and early fullness. 20 lb weight loss. Dry hair, nails, muscle and joint pain all were bad but got better after lap surgery and use of acid supplements 1 year ago.
Also many strange issues: lightheaded, pounding heart, low blood pressure, brain fog with speech and auditory processing difficulty (More noticeable to me than other).

My evals: ultrasound of celiac artery with images in inspiration and expiration to measure blood flow velocities. The higher the velocity, the more the compression. CT of abdomen to see actual anatomy.

My coping strategies: very small frequent meals, laying in position of comfort immediately after eating. I tend to take deep breaths and hold to promote blood flow through the celiac artery. Trial error with testing what foods work best. I don’t
have enough stomach acid so can’t digest protein but I take an acid supplement when I eat meat; lots of odd symptoms improved after I started that. Some people don’t tolerate veggies, some can’t eat sugar. Seems to vary greatly. I do not recommend trying acid pills with out guidance of a specialist, which I had. Some people have too much acid. I had tests that suggest mine was low.

Surgery: I had lap surgery with arcuate ligament release and removal of some of the nerves. All symptoms disappeared except stomach acid limitation so I still take an acid pill with meals that include protein.

There seems to be 2 debates with MALs. First is vascular vs nervous systems issue. Many who have ligament release but nerves not addressed continue to have more pain after surgery. Leads docs to consider this as nerve compression issue. I think it’s both. Second, lap vs open surgery. Some with lap have symptoms return later with scar tissue. Dr. Hsu from Connecticut is the most reputable surgeon (maybe arguable for those who disagree with his method) and he removes the ligament all the way to the spine so people do not have symptoms return. I had Dr. Kendrick from Mayo and I feel satisfied with results but still use some of the same coping strategies, maybe out of fear or habit, or need. Not sure why. I avoid sitting where compression is worst for me, even after surgery as it seems to irritate surgical area.

Evaluation/intervention for MALs is a long journey with more questions than answers. I wish I had joined MALs awareness support group before my surgery. I have learned to have patience, educate myself, take 1 day at a time, rest frequently, and take deep breaths to relax and calm myself. It’s challenging but worth the difficulty because the gratitude for health experienced later is the greatest feeling.
My thoughts and prayers are with you!

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Thank you. You have provided many answers and information that is very helpful to me. Hopefully the next 2 tests will show a better prognosis. At least now I can understand the symptoms and how they pertain to me. I’m very grateful they found it early so I can now go through the elimination process Thank you for your prayers, it’s very sweet of you.

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@103196

Thank you. You have provided many answers and information that is very helpful to me. Hopefully the next 2 tests will show a better prognosis. At least now I can understand the symptoms and how they pertain to me. I’m very grateful they found it early so I can now go through the elimination process Thank you for your prayers, it’s very sweet of you.

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You’re welcome. I remember being in your shoes like it was yesterday. So many questions and so many unknowns. I thought it was urgent to fix it before organ damage but I know now I had MALs my whole life, which explains why I could not handle sitting straight in my desk in grade school and hated family trips in the station wagon; I always went to grandparents instead. Haha
I wish you well. Keep us updated and feel free to ask more questions. I learned a lot from MALs Awareness group on Facebook. So much support there as well.

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Hello my MALS family, I am so happy to see the recent activity here and all of the support from multiple people. I am trying to catch up with posts, and I am so impressed by the community of people here. This journey for some can be long and I hope you all are finding the strength and support you need. I am currently titrating some of my medications and at first it was difficult, but I think I am finding a place were I can tolerate smaller doses. I am seeing my primary care doctor soon and a new vascular medicine doctor in December. Just want to see, how many here have MALS with other diagnosis? Curious how many of us are dealing with more than Mals issues?

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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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@ukmalsman

Hi Kari
Over here in the UK I was told by my pain specialist that they are actively trying to reduce the amount of morphine they are prescribing to patients. It is good and bad, good because I think morphine is over prescribed by consultants that don't look deeply enough into a patients illness. I mentioned in a post that I was once on 90mg of MST twice daily which in hindsight was far too higher dose. It got that way because like you said I became tolerant and had to move up a dose. Why I say bad is because before I was diagnosed with MALs a couple of months ago, my pain specialist said the final stage is to put me on a spinal cord stimulator. He really pushed for me to sign up to this. I did my research and talked to people who had it fitted. If I went ahead that would be the end of investigating what was causing the pain and there were certain scans I could not have if I had the stimulator fitted. I was adamant that I wasn't going to give up finding what was causing this horrific pain so declined the stimulator until I had exhausted all avenues. I'm glad I did otherwise I wouldn't have had the angiogram which showed up the MALs. I know the spinal cord stimulator has helped many people especially those with nerve pain. The problem I have over here in the UK is MALs is even less known, it's taken 2 months for me just to get a consultation with a vascular surgeon. I am hazarding a guess that he knows nothing about MALs. I see him in 2 weeks.

I asked Jill the same question if the consultant has looked at the Celiac Plexus. If like me you have pain when you breathe in and out then (and this is my hypothesis) maybe your suffering from the hammer anvil action. The celiac trunk is trapped in between the median acuate ligament and the celiac plexus. The ligament acting as the hammer when you breathe and the plexus acting as the anvil. I am thinking after a long period of time the celiac plexus becomes damaged too causing scaring/scar tissue on the plexus nerve bundle. Amongst the research they believe that if you get relief from a celiac plexus block then you would be a good candidate for surgery to remove the celiac plexus nerve bundle which may offer permanent pain relief. I believe that MALs sufferers get pain from different areas, pain after eating maybe from lack of blood supply because of compression. Pain on breathing as mention before from hammer anvil action. Constant deep pain could be from the stenosis of the artery itself. That's why I say pain relief should be tailored to the stage you are at. I will post about food too and what has helped me to eat again and not lose weight. There is something you could try yourself which may tell you if it is the nerve bundle. Try a tens machine, if you get some pain relief then you may need to talk to your primary about investigating your celiac plexus.

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I agree with everything you stated @ukmalsman, I appreciate you posting!

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