1. < Digestive Health

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?

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 1, 2017
In reply to @kariulrich "Hi Sarah, Welcome to Mayo Connect! I have had MALS surgery twice, the last time was..." + (show)
@kariulrich

Hi Sarah, Welcome to Mayo Connect! I have had MALS surgery twice, the last time was a little over a year ago. I would be happy to try and answer your questions or help point you in the right direction. One comment I have is I highly recommend if you do need surgery have it done by a doctor and staff that is very familiar with MALS. It is a very specific surgery and takes the skill of vascular surgeon that is familiar with the disease. I have had pain between my shoulder blade with MALS, but I also have a vascular disease. MALS pain is a pain that needs to be ruled out, so what that means if you are experiencing pain especially in the area you described it is important to have a thorough cardiac and GI work up. As far your doctor not going to bat for you to get you the best care... get a new doctor, one that understands that an experienced vascular surgeon is needed. May I ask what state you are in?

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@jamorris9 Did your daughter Sarah have a Cath CT Angio? I am so sorry to hear about her constant nausea and pain. My initial diagnosis was on catheter angiography which showed severe celiac stenosis. I can only speak from my experience, I had MRI/MRA a Functional "Stress" MRI/MRA they all came back normal. (This was prior to my second mals surgery). I know cath based angiogram is more invasive however it may be a route to considering given her past medical history.

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malsman | @malsman | Mar 8, 2017
In reply to @lisa01 "Are you aware of a FB support group called MALS PALS. It is a support group..." + (show)
@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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MALS PALS has been the most informative group we have found and up until recently all we knew about but we also recently found a new group online not on Facebook called MALS Support. Its just a website forum.. I think thats the name of the website too but can't remember. Maybe do a google search for MALS Support and it should come up not sure... Other than that it has been really hard to find support. I highly recommend the that forum because I don't like my friends seeing what I am posting on Facebook. Its too personal. I wish there was more information out there but its been hard. I have had two procedures already and this isn't a easy topic to find doctors that understand it.

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 8, 2017
In reply to @lisa01 "Are you aware of a FB support group called MALS PALS. It is a support group..." + (show)
@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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Thank you for the information. I prefer MayoConnect because the way it is set up and monitored. I find the MALS group here to be respectful. Hope you will join us here!

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malsman | @malsman | Mar 8, 2017
In reply to @lisa01 "Are you aware of a FB support group called MALS PALS. It is a support group..." + (show)
@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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I think I have searched prior but nothing ever came up or I would have been on sooner. Thank you for the welcome. I also may have been searching by a different name. Had to learn a bit. I always called it CACS (Celiac Artery Compression Disease) and was of course told I had celiac disease etc... All the common stories.

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 8, 2017
In reply to @lisa01 "Are you aware of a FB support group called MALS PALS. It is a support group..." + (show)
@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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Yes, that would nice if we could cross reference MALS it affects so many areas. @malsman, how long have you been diagnosed? Have you found anything helpful? I had Open Mals Celiac bypass with ganglionectomy with my 1st surgery. My second surgery included a revision on the dacron graph and included a omental patching around the area to prevent scar tissue from reforming. It all seems like a blur to me.

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 8, 2017
In reply to @lisa01 "Are you aware of a FB support group called MALS PALS. It is a support group..." + (show)
@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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Interesting article: http://www.thij.org/doi/full/10.14503/THIJ-12-2495?code=txhi-site

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Linda | @llwortman | Mar 20, 2017

Very interesting! I would like to hear, see & read more about this. Thank you fir sharing, Good job!
Linda

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Kari Ulrich, Alumna Mentor | @kariulrich | Mar 23, 2017

This was my experience with MALS and FMD done by Mayo in 2011, I have had a revision to my celiac bypass since then, and I am doing well. http://sharing.mayoclinic.org/discussion/before-and-after-fibromuscular-dysplasia-fmd-diagnosis/

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 23, 2017
In reply to @kariulrich "This was my experience with MALS and FMD done by Mayo in 2011, I have had..." + (show)
@kariulrich

This was my experience with MALS and FMD done by Mayo in 2011, I have had a revision to my celiac bypass since then, and I am doing well. http://sharing.mayoclinic.org/discussion/before-and-after-fibromuscular-dysplasia-fmd-diagnosis/

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Kari, thanks for sharing your video about living with Fibromuscular Dysplasia (FMD) and MALS. First-hand stories mean so much.

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evrose23 | @evrose23 | Apr 12, 2017
In reply to @lmtuska "Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo,..." + (show)
@lmtuska

Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo, MN, in February for an open surgery with a Vascular Surgeon. I, too, am interested in connecting with others to best understand this condition, follow up care and research resources. I would be interested in the webinar. Thank you Colleen!

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@kariulrich Hello, I'm about to have a CT-A to determine if I have MALS. Do you mind if I ask why you chose the open procedure vs. laparoscopic?

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