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 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
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
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
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
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
katy1921 | @katy1921 | Apr 17, 2018

Hi Everyone- @kariulrich My mother has been battling chronic abdominal pain for almost 4 years now. Long story short, she felt a weird pain once in her abdomen and mentioned it to her gyno and it led to finding pre-cancerous nodules in her pancreas. She has pancreatic surgery to remove part of her pancreas and her entire splein as a precaution. It was deemed she did not have pancreatic cancer and still does not today. Since then, she has been battling awful pain when she eats, immense weight loss, etc. A year ago she had her gallbladder removed as they thought it would solve it, and it did not. This week, she had celiac plexis block surgery to tackle the pain (again, another surgery designed for pancreatic cancer patients, but without her actually having the cancer). She is much worse since the surgery and no one can seem to figure out why. I came across MALS in my online research, but could not find the answer to this question - can MALS occur as a result of something going wrong during pancreatic surgery?

My mom did not have any issues eating, beyond a regular occasional bad stomach as you would expect with age. The doctor seems to think he messed something up this week in surgery and now I am wondering if she might have this as a result of something occurring in her original surgery a few years ago. Any insight would be much appreciated.

REPLY
2 replies
katy1921 | @katy1921 | Apr 17, 2018
In reply to @dave06351 "Kali, I first need to say thank you for being involved with all of our problems..." + (show)
@dave06351

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.

Jump to this post

Hi @dave06351 - thank you for sharing. I just posted below for my mom and noticed you recently had celiac plexus block. Did you have any complications from the procedure that lead to the diagnosis of MALS? Thank you in advance

REPLY
Dave | @dave06351 | Apr 17, 2018
In reply to @dave06351 "Kali, I first need to say thank you for being involved with all of our problems..." + (show)
@dave06351

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.

Jump to this post

The Plexus Block is used as a Diagnostic for MALS confirmation. My MALS symptoms resolved when the block was used. My symptoms were ripping lower rib pain, throat obstruction sensations and nausea/pain in the upper abdomen. They all went away from my block. Unfortunately, it was only a diagnostic and only lasted me about 24 hours.

REPLY
Dave | @dave06351 | Apr 17, 2018
In reply to @katy1921 "Hi Everyone- @kariulrich My mother has been battling chronic abdominal pain for almost 4 years now...." + (show)
@katy1921

Hi Everyone- @kariulrich My mother has been battling chronic abdominal pain for almost 4 years now. Long story short, she felt a weird pain once in her abdomen and mentioned it to her gyno and it led to finding pre-cancerous nodules in her pancreas. She has pancreatic surgery to remove part of her pancreas and her entire splein as a precaution. It was deemed she did not have pancreatic cancer and still does not today. Since then, she has been battling awful pain when she eats, immense weight loss, etc. A year ago she had her gallbladder removed as they thought it would solve it, and it did not. This week, she had celiac plexis block surgery to tackle the pain (again, another surgery designed for pancreatic cancer patients, but without her actually having the cancer). She is much worse since the surgery and no one can seem to figure out why. I came across MALS in my online research, but could not find the answer to this question - can MALS occur as a result of something going wrong during pancreatic surgery?

My mom did not have any issues eating, beyond a regular occasional bad stomach as you would expect with age. The doctor seems to think he messed something up this week in surgery and now I am wondering if she might have this as a result of something occurring in her original surgery a few years ago. Any insight would be much appreciated.

Jump to this post

MALS can occur when two simultaneous conditions are prevalent. Aggravation of the Celiac Ganglion & the Median Accurate Ligament being in a location that can cause it to collapse the celiac artery or chafe it. It's possible that the surgery did aggravate the Celiac Ganglion; but, should not be a continuous problem.

Obviously, you need to keep on the surgeon that did the work and have him straigthen up since it happened under his hand.

REPLY
Kari Ulrich, Alumna Mentor | @kariulrich | Apr 17, 2018
In reply to @katy1921 "Hi Everyone- @kariulrich My mother has been battling chronic abdominal pain for almost 4 years now...." + (show)
@katy1921

Hi Everyone- @kariulrich My mother has been battling chronic abdominal pain for almost 4 years now. Long story short, she felt a weird pain once in her abdomen and mentioned it to her gyno and it led to finding pre-cancerous nodules in her pancreas. She has pancreatic surgery to remove part of her pancreas and her entire splein as a precaution. It was deemed she did not have pancreatic cancer and still does not today. Since then, she has been battling awful pain when she eats, immense weight loss, etc. A year ago she had her gallbladder removed as they thought it would solve it, and it did not. This week, she had celiac plexis block surgery to tackle the pain (again, another surgery designed for pancreatic cancer patients, but without her actually having the cancer). She is much worse since the surgery and no one can seem to figure out why. I came across MALS in my online research, but could not find the answer to this question - can MALS occur as a result of something going wrong during pancreatic surgery?

My mom did not have any issues eating, beyond a regular occasional bad stomach as you would expect with age. The doctor seems to think he messed something up this week in surgery and now I am wondering if she might have this as a result of something occurring in her original surgery a few years ago. Any insight would be much appreciated.

Jump to this post

@dave06351 @katy1921 I agree with what Dave wrote above. MALS is caused by a ligament causing stenosis, however other vascular issues maybe present for your Mom that have the same symptoms as MALS. It sounds like she has had an extensive work up, but I do not see that anyone has addressed any vascular issues as a possible cause of her problems. Has she seen a vascular doctor at all? I would be curious to know if she had elevated velocities of any of her abdominal arteries on doppler ultrasound. This is a non-invasive test that could give the doctors a better picture of what is happening. Several vascular problems lead to abdominal/intestinal angina angina. It maybe coincidence that her symptoms appeared at the same time of her surgery, however it is something that needs to be noted. Further work up is needed, as a celiac block is helpful for the pain but it does not tell you the cause. Do you have a vascular doctor in your area?

REPLY
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