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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Kari Ulrich, Alumna Mentor | @kariulrich | Apr 1, 2018
In reply to @kariulrich "For those of you who do not have access to facebook this is the update peer..." + (show)
@kariulrich

For those of you who do not have access to facebook this is the update peer recommended physician list. This list is a peer list from MAL PALS and compiled by Robin one of the moderators. MALS PALS is another awesome resource. Here is the link if you would like to join: https://www.facebook.com/groups/105633382202/?ref=br_rs It is awesome to have both groups! Facebook has different privacy settings and updates them frequently. Always know what the terms of use are for all websites you share your personal information on.

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I don't think it attached properly, let me try again 🙂

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jmmb | @jmmb | Apr 1, 2018
In reply to @susanf "Thank you got in to one of the Facebook support groups." + (show)
@susanf

Thank you got in to one of the Facebook support groups.

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Your welcome!! We have to help each other out!!

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jmmb | @jmmb | Apr 1, 2018
In reply to @jmmb "Hi, I am wondering if anyone that has MALS also has body aches, and bad hip..." + (show)
@jmmb

Hi, I am wondering if anyone that has MALS also has body aches, and bad hip pain? Thanks

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Kari, what is FMD? Do you happen to know any CFS support groups? I don't know which to focus on. It is all overwhelming. I hope I get some answers or direction of what to do next!! Hope you had a nice day and didn't eat to much and get sick. I am so sore from just cooking and standing. I get such pain from movement. I have the eating pain and the movement pain. Do you find that as well?

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mandyjunebug | @mandyjunebug | Apr 2, 2018
In reply to @mandyjunebug "Hi. I don't have a diagnosis let along surgery. I am just beginning my search. There..." + (show)
@mandyjunebug

Hi. I don't have a diagnosis let along surgery. I am just beginning my search. There is something seriously wrong with my stomach this past year and doctors have been unhelpful so far. I have to be extremely careful eating or else i suffer severe pain, feeling overfull, nausea and vomiting. As long as i don't eat "too much" or the wrong thing (pasta liquids are my enemies) i manage to get by without symptoms. Instead of an everyday thing now they come on as attacks when i make a mistake. I have had a lot of abdominal surgeries and a lot of other pain not related to eating. Once i even had a doctor tell me i'd had an omental infarction. But so far none of them have brought up MALS. I want to ask, but its tough sometimes, i don't want to get that look...you know the patronizing one that says they think you should not be looking up your symptoms on google. I would like to see a single one of them suffer even half of what i have suffered and not open up google.

Anyway, if there is a good place for me to find a supportive group of people who may share simlar symptoms, even if not a diagnosis, i would love to hear.

I would really like to look at a plate of food without feeling afraid, but in the mean time it would be nice to know some people who understand.

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@kariulrich i would love some recommended reading. Thanks. My history is very complicated...even without something like MALS. I already have a rare disorder called VHL. So i have had a half dozen surgeries, including three major abdominal surgeries. I've had a whipple which removed a good chunk of my digestive tract and head of my pancreas, a bilateral adrenalectomy, and a couple of other bits and bobs removed. I have a lot going on in the abdominal region. Over the last four years i have had an ongoing agonizing epigastric pain that is not related to eating, and got a whole bunch of shrugs from doctors, including one comment of "I'm not going to say it's all in your head..." And has been pretty much brushed off as "scar tissue". Luckily, i figured out that a course of 3 advil per day keeps that pain managed pretty well. This new stomach pain came on in the last year, and i had been seeing a local gastro doctor, but i got the brush off from him, so i emailed my endocrinologist at UW and asked him to add a gastro to my team there. I already have a neurosurgeon, pancreatic surgeon, retina specialist, and endocrinologist...gastro should complete the set LOL. Some of the things that go with MALs sounds very familiar, but some not familiar. So hopefully i can finally get this sorted. I am managing my symptoms well enough that the worst episodes come like attacks now instead of all the time. So that is good. One the weird things, and the thing that causes me the most problems is liquids. Have you ever heard of liquids being a problem for anyone else? For example a few nights ago i had one bowl of split pea soup for dinner. Liquids are a known risk food for me, but i waited a few minutes after eating the soup and didn't feel any warning signs. So i decided i could have a cup of apple juice. About an hour later i was in so much agony. The easiest way to describe it is feeling like i just won a hotdog eating contest and now my stomach is about to explode. I was belching. Uncomfortable. Gripping my stomach. Pretty much debilitated. And looking at the floor like it would be a good place to writhe in agony. I was like that for about 2 hours with no end in sight. Since it has helped me avoid puking in this situation before i worked up the courage to slowly walk up and down the stairs a few times, popped a couple advil for good measure. After a total of 2hr 45 minutes it finally stated to ease off and then was gone pretty quickly. All this from maybe 2 cups of liquid. Have you heard of that happening to anyone else?

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jjren | @jjren | Apr 3, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

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Has anyone had a Dr explain why patients were fine no symptoms for many years and then all of sudden have MALS symptoms?

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pfpurple | @pfpurple | Apr 3, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

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Gosh, I would love to know this as well!

REPLY
mandyjunebug | @mandyjunebug | Apr 4, 2018
In reply to @jmmb "Hi everyone. I finally got a call from Mayo and I am going to see a..." + (show)
@jmmb

Hi everyone. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

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@jjren i read somewhere that MALS can sometimes come after weight loss or severe illness or surgery.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 6, 2018

Special Announcement

Mayo Clinic recently started a blog series called Experts by Experience. It is published bi-weekly on Mayo Clinic's Social Media Network here: https://socialmedia.mayoclinic.org/tag/experts-by-experience/

Today we published an article written by your fellow MALS member and Connect friend @kariulrich
- Grieving the Loss of Your Physician – Experts by Experience by our very own https://socialmedia.mayoclinic.org/2018/04/06/grieving-the-loss-of-your-physician-experts-by-experience/

Thank you Kari for sharing your insights here and for Mayo Clinic professionals!

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 6, 2018

Thought you all would like to see this, we have had discussions before about pharmacogenomics testing, there is a program coming up on this topic! https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-radio-pharmacogenomics-testing/

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dbarselow | @dbarselow | Apr 7, 2018

Hi I do not know who to address this to so I'll guess I just state my case. I live in New England Massachusetts to be exact. not the city but the arm of cape cod I went to the emergency room complained about a migraine doctor ask some questions that led to two cat scans one of the head and one of my mid torso (Woke up one evening on my stomach gasping for air) and this is when I learned about a celiac aneurysm I happen to have 2.3 in size I later learned I have this compression syndrome. So I began to research on the internet and learned a lot about it. My main concern is that I have been bounced back and forth between the same group of doctors and ended up being referred back to the very first doctor who happens to claim he has done hundreds of celiac artery procedures. I my first referral was to a doctor in Boston where there are some of the best doctors in the world right but the doctor was only in the mood to give advice for procedure I guess. Scared and lonely feeling for sure Here is the most up to date reading I read, it is in PDF format. ( https://jamanetwork.com/journals/jamasurgery/fullarticle/212580#full-text-tab )

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