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.

jjren | @jjren | Apr 17, 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

Is there a list of vascular entities?

REPLY
jmmb | @jmmb | Apr 12, 2018
In reply to @tclarkkkk "Thanks for the quick response! I will definitely be straight forward. As to what you were..." + (show)
@tclarkkkk

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..

Jump to this post

I find also that when I get up at night to go to the restroom, I get back in bed and my heart is racing and it is really hard to catch a breath. And yes, not because of the few steps it takes!!! It is weird that there are so many weird symptoms, yet so many of us share them. There has to be something to that I would think. If only the Dr.s would see that!!

REPLY
Dave | @dave06351 | Apr 12, 2018

Kali, I first need to say thank you for being involved with all of our problems with MALS. Secondly; I need to ask, how dire is MALS symptoms for everyone. I've been diagnosed after physical exam, CT angiogram for anatomy only, and a celiac plexus block. It seemed like we would need more tests than this, other than history of mild gastric emptying; 14% gallbladder function and removal. But, Dr. Hsu said that's all we need. I feel like my symptoms are much more dire than a the anatomy of this issue. I almost feel like a completely detached a ligament in my diaphragm and I'm suffocating. Now, I had a chest x-ray after my block and I assume that means my diaphragm is properly attached. But, How does MALS just happen out of the blue? I would think the geometry would have needed to change to cause the agrivation and restriction of the Celiac artery.

REPLY
9 replies
dbarselow | @dbarselow | Apr 10, 2018
In reply to @tclarkkkk "Thanks for the quick response! I will definitely be straight forward. As to what you were..." + (show)
@tclarkkkk

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..

Jump to this post

I get up in the evening to urinate and I am breathing like a Mexican bull in the arena by the time I return to bed and believe me it&apos;s not for or no steps involved at all.

Dbarselow

REPLY
dbarselow | @dbarselow | Apr 10, 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

Had CT done twice already with contrast mind you, the second time the tech pushed the syringe in all at once I felt like I was going to burst into flames and stop breathing. I have so much going on in my personal very
personal life wright now I don&apos;t have time for this believe it or not. But I be back I hope I just last till I can!

Dbarselow

REPLY
jmmb | @jmmb | 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

@tclarkkkk , your symptoms do sound like MALS. @pfpurple post was pretty much what I would say. They say GI could diagnosis this, but I have not had much luck with GI's. I was diagnosed by accident going to the er with extreme pain. I was told I had IBS and I had ulcers so I figured just that and wanted pain meds. They insisted on doing ct scan and said my arteries were narrow and to go to a vascular surgeon. My primary referred me and then this long journey began. that was 2014. I had no idea what a difficult surgery and complicated surgery this was. I had both celiac and SMA involved. Did well for a few months and then started to narrow again. Then had stents put in 2015 each artery, then just this past Oct. had a balloon in celiac. Everyone is different, but the more you hear, the more knowledge you gain and can be helpful. This is a great site. @kariulrich is awesome and so knowledgeable. Good luck and let me know if you have any questions. I would push for a ct scan even from the pcp to start. HOpe that helps...

REPLY
susanf | @susanf | Apr 9, 2018
In reply to @pfpurple "I have a very similar situation and I insisted to my doctor that we do a..." + (show)
@pfpurple

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.

Jump to this post

Thank you. It was helpful. Keep searching. All I know after tonight's attack I am counting down the days, hours, minutes until my surgery on the 18th. Thank you again for the support.
Susan

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 9, 2018
In reply to @pfpurple "I have a very similar situation and I insisted to my doctor that we do a..." + (show)
@pfpurple

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.

Jump to this post

I believe it depends on the clinic doing the U/S. For some reason I believe it should be under 200.... but please do not quote me on that! I maybe remembering my last U/S results lol!! I will do some checking. This article is helpful https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419433/

REPLY
tclarkkkk | @tclarkkkk | 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

So I tried to schedule with the cardiologist but since my PCP referred me there to get an Event Monitor to check for irregular heartbeats they will not see me because they are out of those right now.. So I believe I am just going to follow up with my GI doctor because he seems the most thorough right now with trying to figure out this pain. I guess I was just confused as to who to start with first GI or cardiology! Because my PCP says to just wait it out and change my diet for now.

REPLY
tclarkkkk | @tclarkkkk | 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

Hi Kari. Thank you for taking the time to read and respond. I am going to make an appointment with the cardiologist and he should be able to order those types of tests correct? I have no problem advocating for myself as a I am a super healthy 23 year old with no health history or anything major that runs in my family. So having these symptoms for months on end has not been fun! As you all know. I am located in Seattle!

REPLY
View MoreView Less
Please sign in or register to post a reply.