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.

Profile picture for Jess @jmendez37

Hi! so i was diagnosed with Mals a few months ago. I have been dealing with this issue since September 2023. I have been through every test possible so far. I went from 155lbs to 112lbs..Eating is very painful so now im at the point of food advesion..Knowing i will be in pain. I would rather starve:( I have been attending the Mayo clinic for months and with great experiance minuse my last visit went horribly wrong due to being malnurished and being told of many time delays. I have an upcoming procedure Medium Arcuate ligament Release. Doctor told me i have a 70% chance that it will work. Has anyone gone through this and what can i expect..the good and bad?

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I had Mals surgery 4 years ago, with an experienced surgeon who has 90% success rate for mals. You should have other compressions checked (EDS, ACNES,NC,). There are more and also, mals can affect pots. Message me if you need more info. Facebook Mals Awareness has lots of information and people who have been through this for support. Best wishes!

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I had mals surgery sept 20th of 2023. However I am 43 I have been living with this for 43 years. My stomach nor my bowel muscles do not work anymore with out medicine

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Profile picture for Jess @jmendez37

yeah it was the mayo clinic in jacksonville. Unfortuantly the celiac plexus block was all for not. I was passing out and taken to the ER without knowing truly whether it worked or not. I had one bite of a cracker and that is all that i remember.:-| but i still have hope for getting better !:-)

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Ofcourse you will get better! All of us suffering with masks will get better. We just need a great Dr that specializes in Mals. And do lots of our own research. I also found out I have dysautonomia. My surgeon said 80 percent of her Mals patients have this as well. I take mididrine which helps all my blood pressure issues. Thank God. Good luck to you. Keep advocating for yourself!!!! Keep in touch. 😊❤️🙏🏻

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yeah it was the mayo clinic in jacksonville. Unfortuantly the celiac plexus block was all for not. I was passing out and taken to the ER without knowing truly whether it worked or not. I had one bite of a cracker and that is all that i remember.:-| but i still have hope for getting better !:-)

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Profile picture for Jess @jmendez37

My last visit went horribly wrong..with not being able to eat or drink "fasting"many hours before 2 testing procedures..then hours of delay after scheduled time frame..then low blood sugar and passing out due to dehyration. They did not check to see if my IV was connected and working. Epic Fail on their end. Had to go To the ER side of the mayo..just all around a terrible sh*t show. I notified my experiance. Receieved a letter in the mail for them apologizing of the time delays of the procedure but then was told that i allowed them to still treat me and go ahead with the procedure even though i was in a state of fasting essentially for 3 days 😐 " Mind you i traveled 5 hours from the panhandle to get these procedures done, i didnt feel like i had any options at that point. If i had said no!.. reschule me ..waiting for weeks to get everything going again , just felt impossible considering i have been dealing with this for so long and i am just tired.. With that experiance i am now more of an Advocate of my well being than anything. 1st procedure was an arteriorgram procedure. 2nd was the celiac plexus nerve block. My doctor was great and he cant help the time delays for sure i just wish the care side of it all was better so no one has to go through what i and my family had to deal with. I dont remember much. 🙁

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I’m
So sorry for your horrible experience! Sounds awful. That was Mayo Clinic? I have heard mixed reviews about them. They used to be the best. Did celiac plexus block help at all?

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@jmendez37
Welcome to Mayo Connect!
You have had a rough time- I think all of us here have had a similar experience.
What happened at your last Mayo visit?
When I had the ligament release the surgeon told me I had a 50-50 chance of success. I knew I had to have the surgery because I couldn’t continue living like I was then.
It actually was 100% success.
Laparoscopic surgery. There was some pain afterwards- Gabapentin worked well. I assume it was nerve pain. They also removed nerve plexus.
There was no more pain related to eating!
However, the celiac artery had a kink from the ligament pressure and in 6 months I needed a stent to keep it open.
Good luck! Let us know how it went.

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My last visit went horribly wrong..with not being able to eat or drink "fasting"many hours before 2 testing procedures..then hours of delay after scheduled time frame..then low blood sugar and passing out due to dehyration. They did not check to see if my IV was connected and working. Epic Fail on their end. Had to go To the ER side of the mayo..just all around a terrible sh*t show. I notified my experiance. Receieved a letter in the mail for them apologizing of the time delays of the procedure but then was told that i allowed them to still treat me and go ahead with the procedure even though i was in a state of fasting essentially for 3 days 😐 " Mind you i traveled 5 hours from the panhandle to get these procedures done, i didnt feel like i had any options at that point. If i had said no!.. reschule me ..waiting for weeks to get everything going again , just felt impossible considering i have been dealing with this for so long and i am just tired.. With that experiance i am now more of an Advocate of my well being than anything. 1st procedure was an arteriorgram procedure. 2nd was the celiac plexus nerve block. My doctor was great and he cant help the time delays for sure i just wish the care side of it all was better so no one has to go through what i and my family had to deal with. I dont remember much. 🙁

REPLY
Profile picture for Jess @jmendez37

Hi! so i was diagnosed with Mals a few months ago. I have been dealing with this issue since September 2023. I have been through every test possible so far. I went from 155lbs to 112lbs..Eating is very painful so now im at the point of food advesion..Knowing i will be in pain. I would rather starve:( I have been attending the Mayo clinic for months and with great experiance minuse my last visit went horribly wrong due to being malnurished and being told of many time delays. I have an upcoming procedure Medium Arcuate ligament Release. Doctor told me i have a 70% chance that it will work. Has anyone gone through this and what can i expect..the good and bad?

Jump to this post

@jmendez37
Welcome to Mayo Connect!
You have had a rough time- I think all of us here have had a similar experience.
What happened at your last Mayo visit?
When I had the ligament release the surgeon told me I had a 50-50 chance of success. I knew I had to have the surgery because I couldn’t continue living like I was then.
It actually was 100% success.
Laparoscopic surgery. There was some pain afterwards- Gabapentin worked well. I assume it was nerve pain. They also removed nerve plexus.
There was no more pain related to eating!
However, the celiac artery had a kink from the ligament pressure and in 6 months I needed a stent to keep it open.
Good luck! Let us know how it went.

REPLY

Hi! so i was diagnosed with Mals a few months ago. I have been dealing with this issue since September 2023. I have been through every test possible so far. I went from 155lbs to 112lbs..Eating is very painful so now im at the point of food advesion..Knowing i will be in pain. I would rather starve:( I have been attending the Mayo clinic for months and with great experiance minuse my last visit went horribly wrong due to being malnurished and being told of many time delays. I have an upcoming procedure Medium Arcuate ligament Release. Doctor told me i have a 70% chance that it will work. Has anyone gone through this and what can i expect..the good and bad?

REPLY
Profile picture for Kari Ulrich, Alumna Mentor @kariulrich

Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security of being here on Mayo connect vs Facebook when it comes to health information security. I was hoping that a group would start here for MALS. If we had enough patients here on Mayo Connect maybe they would consider doing a webinar in the future. I really like the format of this site. I have had Open Mals surgery twice, once for a bypass and then a revision several years later. If there is anyone interested in joining me here let me know.

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I was diagnosed with Mals a few months ago...it has been an on going battle..highs and lows of this diagnosis

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@wheretogofromhere
Her doctor apparently does not understand how a Doppler ultrasound works. Gas and bowels don’t interfere with the test.

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