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 | 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.

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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 but please do not quote me on that!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!

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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.

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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
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

Does anyone know what a Dr. uses as a baseline PSV and EDV numbers on a duplex ultrasound to determine whether or not there is celiac artery compression? I have my report but it might as well be written in Chinese. I had it ordered by a vascular surgeon who then sent me to a general surgeon who performs the surgery. He did not go over the ultrasound just the surgical procedure. Thank you in advance for any advice.

REPLY
tclarkkkk | @tclarkkkk | Apr 9, 2018

Thank You. I will take a look at Karis story,

My nutritional intake is very good. I eat pretty healthy for the most part and stay away from red meats and have been staying away from dairy and gluten to see whether the pain is coming from certain foods or certain intolerances. But nothing has helped! I used to workout 3-5 times a week. But since this pain started in December I haven't gone as regularly as I have wanted;

REPLY
tclarkkkk | @tclarkkkk | Apr 9, 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

Yes mine radiates as well sometimes and with eating 🙁

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | 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, I agree your symptoms sound like the classic MALS symptoms, but there are several other vascular entities it could be, all which we are here to help you get through! I would mention you are concerned both about MALS or another vascular problem causing your symptoms. A CT angiogram will be helpful, also a doppler ultrasound that looks at velocities. Testing can be hit or miss, as they need to see what is happening on inspiration and expiration. You must advocate for yourself, and mentioning a rare disorder can be intimidating for some physicians, be persistent until you fully understand what is happening in your body. I am not sure where you are located, but a vascular specialist should know something about MALS. Keep us updated, figuring out the diagnosis is the first step in this very long journey. I am so happy you found us! Stay strong!! You are not alone!

REPLY
pfpurple | @pfpurple | Apr 9, 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

Yes, I do get the pain/burning under my sternum. It radiates fiercely into my back. And it is worse after I eat or with even the mildest of exercise (and by exercise, I mean walking across the room). 🙁

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.

REPLY
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?

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