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

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.

REPLY
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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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/

REPLY
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 )

Jump to this post

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.

REPLY
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 )

Jump to this post

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

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tclarkkkk | @tclarkkkk | Apr 8, 2018

Hi guys. I am a 23 year old female! I have been experiencing lots of symptoms over the last 6-7 months and have got no answers. It started out in December with very horrible abdominal pain that radiated to my back, nausea,fatigue, SOB and vomiting. After being seen in the ER that night they did an ultrasound and blood work to rule out gall bladder issues .Gall bladder came back fine. Was prescribed narcos and told to follow up with a primary care provider. While following up with my primary care doctor she did additional blood work and thoroughly checked my liver and what not. Everything came back perfect. She then referred me to see a GI specialist and he ordered an Endoscopy. Ever since the beginning of December I lost 15lbs, could barely eat and had nausea for 3 months straight. The Endoscopy was done in the beginning of February. Results came back with mild gastritis and possible gastroproieses. The shortness of breath would come and go with the abdominal pain. The only way to relieve the pain was medication and laying flat on my back while stretching out. Was also referred to a Pulmonolgist to rule out asthma and anything breathing issues associated with the SOB. Here I am today with no answers.. but I know something isn't right with my body. Pain is right under my sternum and feels like there is a rubber band pinching or holding something. Next steps I believe my GI DR wanted to do are imaging on my abdomen area and being seen by a cardiologist. Seems like a lot of my symptoms are similar to your guys symptoms! Im sorry you guys all have to go through this. It really can put you down and make you want to feel like doing nothing. I am hoping to get answers soon. Should I mention MALS to my DR or just let him run his tests and see? I feel like a lot of missed diagnoses go missed sometimes.

Thanks guys!

REPLY
7 replies
pfpurple | @pfpurple | Apr 9, 2018

I have a very similar situation and I insisted to my doctor that we do a test for MALS. There are a couple of ways to start. One is a very specific ultrasound where they have you breathe out while checking your velocities (if there is a compression of the celiac artery, they will see it with the exhalation). Other tests might include a CTA with contrast. My tests came back positive for MALS and I am seeing a vascular surgeon this week. In the meantime, my understanding is that the breathing, and in my case, heart palpitations (and slow digestion, and possibly even malnutrition), are stemming from the fact that I have a very sensitive autonomic nervous system and the nerves between the celiac artery and the ligament that is compressing it, are irritated themselves and are irritating my autonomic nervous system (causing all of those other issues). A good cardiologist, or even your PCP could explain the autonomic nervous system far better than I, but I hope I have given you something to go on.

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3 replies
tclarkkkk | @tclarkkkk | Apr 9, 2018

Thanks for the quick response! I will definitely be straight forward. As to what you were saying about the autonomic nervous system that totally makes sense for the palpitations and shortness of breath. Do you also have a burning or warm feeling under the sternum? My pain comes and goes a lot too. It sucks that to see all these specialist it takes weeks to get in. I am so ready to be out of pain and being uncomfortable..

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5 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 9, 2018

Welcome to Connect, @tclarkkkk. I'm certain that Mentor @kariulrich will share her insights, and may be able to best guide you. In the meantime, you might wish to read her story:
– Grieving the Loss of Your Physician – Experts by Experience https://socialmedia.mayoclinic.org/2018/04/06/grieving-the-loss-of-your-physician-experts-by-experience/

I'm also tagging Connect members @jmmb @jjrenn @plucky who have written about their struggles with a MALS diagnosis.

@tclarkkkk, may I ask how is your nutritional intake?

REPLY
jjren | @jjren | Apr 9, 2018
In reply to @tclarkkkk "Hi guys. I am a 23 year old female! I have been experiencing lots of symptoms..." + (show)
@tclarkkkk

Hi guys. I am a 23 year old female! I have been experiencing lots of symptoms over the last 6-7 months and have got no answers. It started out in December with very horrible abdominal pain that radiated to my back, nausea,fatigue, SOB and vomiting. After being seen in the ER that night they did an ultrasound and blood work to rule out gall bladder issues .Gall bladder came back fine. Was prescribed narcos and told to follow up with a primary care provider. While following up with my primary care doctor she did additional blood work and thoroughly checked my liver and what not. Everything came back perfect. She then referred me to see a GI specialist and he ordered an Endoscopy. Ever since the beginning of December I lost 15lbs, could barely eat and had nausea for 3 months straight. The Endoscopy was done in the beginning of February. Results came back with mild gastritis and possible gastroproieses. The shortness of breath would come and go with the abdominal pain. The only way to relieve the pain was medication and laying flat on my back while stretching out. Was also referred to a Pulmonolgist to rule out asthma and anything breathing issues associated with the SOB. Here I am today with no answers.. but I know something isn't right with my body. Pain is right under my sternum and feels like there is a rubber band pinching or holding something. Next steps I believe my GI DR wanted to do are imaging on my abdomen area and being seen by a cardiologist. Seems like a lot of my symptoms are similar to your guys symptoms! Im sorry you guys all have to go through this. It really can put you down and make you want to feel like doing nothing. I am hoping to get answers soon. Should I mention MALS to my DR or just let him run his tests and see? I feel like a lot of missed diagnoses go missed sometimes.

Thanks guys!

Jump to this post

I would definitely mention to be testing for MALS. I have been suffering since 2015. This is my fourth GI doctor. This past Thursday I had a CT scan with contrast to confirm MALS. I am waiting for the results.

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