Median Arcuate Ligament Syndrome (MALS)

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 !:-)

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?

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. 🙁

@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.

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?

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

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

Definitely go to a good vascular surgeon. They will first want to rule out any gi issues. As I have gone for about 8 of them. Also there is a neurological condition that most people with Mals have. It’s called dysautonomia. And I have both. My surgeon said once the surgery is done the dysautonomia goes away! Which is awesome news. I see my surgeon on June 6 to discuss all my options. Good luck to you and your daughter. You will find your answers!!! God bless you both. ❤️🙏🏻

Actually I just posted this on April 15th. The CTA showed nothing wrong however I researched how the test is supposed to be performed for diagnosing MALS and I think it might have been done wrong. I asked her doctor to order a duplex ultrasound to see how the blood flows through her veins and expressed that I still think it's a vascular or even a nerve condition. Her doctor is standing by the radiologists interpretation of the CTA and said that the ultrasound would not show anything because gas or bowels would block the view. She just wants to send her to another GI doctor. I'm pursuing other doctors on my own to explore the possibility of it being MALS or maybe a nerve condition because this is the only condition I can find that matches her symptoms to the letter.

I'm so sorry you're having to experience this. MALS is an awful condition. Facebook has several pages that are excellent resources pages. MALS is one of them, and Median Arcuate Ligament Foundation is another. They have list of doctors and people sharing they're experiences
I was diagnosed 4 hours ago after having 40 tests ruling out every imaginable GI issue. 2 years ago I had a robotic lap to cut back the Median Arcuate Ligament and nerves. Unfortunately it still wasn't enough
I researched Dr Woosup Park for University Hospital in Ohio. He did Open surgery in Nov 2023. I had surgery scare tissue compressing one my Ligament and other organs. This is a very tough recovery but finally successful. Please research your doctors before doing surgery. I didn't want to travel but eventually I finally did from Florida to find the one person who was excellent
Good Luck? Stay positive and keep advocating.