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.

@bree11 Here is some very basic information about MALS: https://my.clevelandclinic.org/health/articles/median-arcuate-ligament-syndrome-mals
There are a few good papers on MALS geared toward the medical professional also, wish there more! There needs to be more awareness done on this condition. Have your doctors considered a GI motility study? For me most of my GI work up came back normal, I had a some motility issues but not significant enough to raise eyebrows. It is a long diagnostic road, but worth taking in the end. If the tests get too much, let the doctors know. Sometimes I needed to take a month off of testing just to get away from the hospital awhile. (With my doctor's permission). I was fortunate that my Mayo team really believed in shared decision making. The fact you found a doctor that is willing to look further into MALS is priceless! That says a lot, and you may find that you may be guiding your care and teaching more than you expected. Don't be afraid to tell him what you have learned.

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Here is an abstract that may help: http://www.sciencedirect.com/science/article/pii/S0890509608004226
(Management of Median Arcuate Ligament Syndrome: A New Paradigm
Andrew J. Duffy1, , , Lucian Panait2, Dan Eisenberg1, Robert L. Bell1, Kurt E. Roberts1, Bauer Sumpio1
1 Yale School of Medicine, New Haven, CT
2 Saint Mary's Hospital, Waterbury, CT
Available online 6 January 2009)

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Has anyone with here with MALS experienced chest pain?

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Never had MALS, just learning about it! It was great meeting you in person at Mayo Social Media event!

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@llwortman

Never had MALS, just learning about it! It was great meeting you in person at Mayo Social Media event!

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The pleasure was all mine @llwortman, you are a remarkable human being and such an inspiration. I am so happy our lives have crossed paths!

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@applegrl Welcome to the MALS discussion! Do you or a family member have similar symptoms?

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Would like to connect with anyone who has Stent placement for MALS or has had recurrence of symptoms after multiple surgeries. Thank you!

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@lisa01

Are you aware of a FB support group called MALS PALS. It is a support group for people suffering with MALS and their loved ones. It gives a tremendous amount of informstion of individual struggles, and various treatments and specialists that treat MALS. Highly recommended!!

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Does this mean that even though you had a ganglionectomy with the 1st surgery that your symptoms can back? Did you need the omental patching around the area because scar tissue was causing problems/pain? I'm asking because my daughter is 4.25 months post op and at 2 months post op a stabbing pain has started in her epigastric region. Since there is no easy way to diagnose scar tissue I am looking at all options.

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Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain - the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn't find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn't see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren't rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

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@azbluebird

Hi Kari, I just discovered your forum and find it a valuable source of information, especially by other patients that have experienced a similar condition. I was diagnosed with gastroparesis 4 years ago and now that the abdominal pain and nausea have worsened they did a CT angio and discovered I have MALS and other related issues. I did research online and thought the doc would recommend surgery to fix the problem but my GI doc said she would not recommend surgery unless I lost 25-30 lbs and was very malnourished. That would leave me at 78 lbs. I went from 128 to 94 lbs while they were diagnosing the gastroparesis. The upper gastric pain will start early in the morning with 1/2 glass of water to take my gastroparesis pill. Even without any food. Now I have no idea what is causing the sudden increased pain - the MALS or the stomach. I am on a very restricted diet and eat extremely small amounts of food to lesson the stomach pain. The only medication I take for the gastroparesis is Domperidone. She has no suggestions on what to do to help alleviate the pain from the Celiac artery compression syndrome and some other issue involving the duodenum.

My PCP said I should probably try to get in to Mayo Clinic but I tried several years ago when my doc couldn't find out what was wrong for 1 1/2 years, and was told because I have Medicare (and a supplement) they couldn't see me in the GI department. Since MALS and Gastroparesis is considered rare, do you think I should reapply and see if they would accept me for these conditions. The other health conditions I have that aren't rare can be treated by regular specialists but the two new conditions they seem to not have a clue.

If not Mayo, maybe you or others are aware of specialists in the greater Phoenix area that know more about these conditions than the average Gastro. I would appreciate any feedback.

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Welcome to Connect, @azbluebird.
I'm confident that @kariulrich will reply to you soon. It helps so much to hear from others who have experience with the same condition. In the meantime, I wanted to see if I can help with your questions with respect to getting an appointment at Mayo Clinic. Did you request an appointment at Mayo Clinic Arizona? Mayo does accept Medicare and you are in state. It may be worth trying again. Here is a link to the online form and contact numbers http://mayocl.in/1mtmR63. You can request an appointment yourself or have your doctor call.

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