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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dbarselow | @dbarselow | Apr 7, 2018
In reply to @dbarselow "Hi I do not know who to address this to so I'll guess I just state..." + (show)
@dbarselow

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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Well pfpurple your words are kind and helped me as I read them. I want to thank you very much.

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dbarselow | @dbarselow | Apr 7, 2018
In reply to @dbarselow "Hi I do not know who to address this to so I'll guess I just state..." + (show)
@dbarselow

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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Nice link and lots of cases, I am tired right at the moment don't have time to read them all but tomorrow is another day. I posted a link in one of my posts I think anyone with this condition should read it.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 2018
In reply to @dbarselow "Hi I do not know who to address this to so I'll guess I just state..." + (show)
@dbarselow

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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Welcome to Connect, @dbarselow
You may also be interested in joining members talking about celiac artery aneurysms in this discussion:
- Celiac Artery Aneurysm https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/

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pfpurple | @pfpurple | Apr 7, 2018
In reply to @dbarselow "Hi I do not know who to address this to so I'll guess I just state..." + (show)
@dbarselow

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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I am so sorry you are going through this! And two very different things on the same artery no less. Since there are only a handful of surgeons in the US with MALS experience and likely many more with aneurysm experience, I think if it were me, I would get with one of the MALS experts. There is a list on this site somewhere (@kariulrich can you direct @dbarselow ?). Also, if you haven’t done so yet, you might wish to join the MALS Pals group on Facebook. I have found it to be very informative (and a list of MALS surgeons can be found there as well). I should mention that no MALS surgeon has done “hundreds” of these (most have done 10-20 with the exception possibly of Dr Hsu or Dr Bilchik) but even they haven’t likely done a hundred even. MALS is extraordinarily rare and until recently hasn’t been well studied. I hope this helps a little. 🙂

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dbarselow | @dbarselow | Apr 7, 2018

May I add that there is more than one name for this MALS syndrome. I urge people to read this celiac aneurysm article as it has a lot to do with one and another. God bless to all of you.

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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 )

REPLY
4 replies
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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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
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.

REPLY
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!

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