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 | Feb 16, 2018

@tjriley Welcome to Mayo Clinic Connect! I was diagnosed with MALS over a decade ago. I am now 50 years old. I believe I had symptoms most of my life and they went undiagnosed for many years. The seizure-like activities with altered consciousness level symptoms is not something I have heard before with MALS pain, however it would not surprise me if this is the way she is coping with the severe pain. MALS pain can be severe and debilitating. I am happy to hear you are going down the neurological work up avenue. Both MALS and Seizures can be a difficult diagnosis and one that take time and patients. I think starting with the celiac block is a wise decision given her age age and symptoms. There is a physical component to MALS along with a psychological component that is not addressed properly in my humble opinion. A good therapist that understands chronic pain and rare disease may be helpful to your daughter, in addition to the block. For me MALS has become chronic and learning coping skills and how to become my own advocate through therapy has been helpful. To give you a bit of my background I have an underlying vascular disease and connective tissue disease that went undiagnosed through out my teenage years through early adulthood. MALS was found through workup for my vascular disease and once it was identified it took me three years to be comfortable seeing out treatment. The pain like I said earlier can be severe, it lead to food avoidance and malnutrition. I have had 2 open surgeries for MALS. Many children do well with the laparoscopic approach to correcting MALS. This diagnosis takes a toll on a family, and I cannot imagine what it must be like to see your child go through this. Please know you are not alone in this. I am so happy you have found Mayo Clinic Connect. This is a small group but an amazing, strong supportive group. Stay strong and take one moment at a time.

REPLY
1 reply
Gary, Alumni Mentor | @gman007 | Feb 16, 2018
In reply to @kariulrich "@tjriley Welcome to Mayo Clinic Connect! I was diagnosed with MALS over a decade ago. I..." + (show)
@kariulrich

@tjriley Welcome to Mayo Clinic Connect! I was diagnosed with MALS over a decade ago. I am now 50 years old. I believe I had symptoms most of my life and they went undiagnosed for many years. The seizure-like activities with altered consciousness level symptoms is not something I have heard before with MALS pain, however it would not surprise me if this is the way she is coping with the severe pain. MALS pain can be severe and debilitating. I am happy to hear you are going down the neurological work up avenue. Both MALS and Seizures can be a difficult diagnosis and one that take time and patients. I think starting with the celiac block is a wise decision given her age age and symptoms. There is a physical component to MALS along with a psychological component that is not addressed properly in my humble opinion. A good therapist that understands chronic pain and rare disease may be helpful to your daughter, in addition to the block. For me MALS has become chronic and learning coping skills and how to become my own advocate through therapy has been helpful. To give you a bit of my background I have an underlying vascular disease and connective tissue disease that went undiagnosed through out my teenage years through early adulthood. MALS was found through workup for my vascular disease and once it was identified it took me three years to be comfortable seeing out treatment. The pain like I said earlier can be severe, it lead to food avoidance and malnutrition. I have had 2 open surgeries for MALS. Many children do well with the laparoscopic approach to correcting MALS. This diagnosis takes a toll on a family, and I cannot imagine what it must be like to see your child go through this. Please know you are not alone in this. I am so happy you have found Mayo Clinic Connect. This is a small group but an amazing, strong supportive group. Stay strong and take one moment at a time.

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Kari,
I apologize, but I had to look up MALS and realized it is marked by abdominal pain among others symptoms. You mention the celiac block. Can you explain where this was done (anatomically), how many times, and your results. I have had them for pancreatitis pain and not really received much relief, but just wondered if there was another location for the injection that may have been more successful.
Gary

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mmifflin | @mmifflin | Feb 17, 2018
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!!

Jump to this post

I’m interested

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jmmb | @jmmb | Feb 17, 2018
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!!

Jump to this post

@mmifflin I never know how to read these posts sometimes so, were you talking to me? and if so, what info would you like?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 20, 2018
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!!

Jump to this post

Welcome @mmifflin; may I ask what brings you to Connect? We look forward to getting to know you.

REPLY
mmifflin | @mmifflin | Feb 20, 2018
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!!

Jump to this post

Hi, I am a MALS patient, had laparoscopic surgery Feb 5th at Mayo in Jacksonville FL.

REPLY
mmifflin | @mmifflin | Feb 20, 2018
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!!

Jump to this post

Sorry, I just meant I’m interested in being a part of this group.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 20, 2018
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!!

Jump to this post

We're so glad you are part of the group, @mmifflin. Talking, sharing experiences, offering support, and learning from each other – that's what Connect is all about. I'm certain that Mentor @kariulrich will join me in extending a warm welcome, and sharing her knowledge about MALS, as well.

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Kari Ulrich, Alumna Mentor | @kariulrich | Feb 20, 2018
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!!

Jump to this post

Welcome to Mayo Clinic Connect @mmifflin! So happy to hear that Mayo in Jacksonville is taking on MALS patients! Would love to hear your experience when you feel up to it. Your surgery was recent, hope your recovery is going well!

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Feb 20, 2018

MALS and Cold/Flu.... so what all do you do when you get a cold etc to keep your strength up? This cold is lasting a long time and nothing sounds good! Just want to get through this cold and keep my weight stable. Very congested and most of the ensure drinks etc are like mike and create more congestion! Grrrr... any thoughts?

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