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.

I have been searching for the cause of my pain for the last 5 years. It started with a hiatal hernia repair and TIF. There were complications along the way that resulted in me having another hiatal hernia repair two days after the first. More complications left me with an abscess between my aorta and esophagus. After a couple of times almost dying what I was left with was epigastric pain. It hurts worse after I eat. My heart rate will spike. It doesn’t seem to matter what I eat or how much I eat. The pain always comes. It has left me feeling pretty isolated and alone even with an incredible support system. Between the pain, nausea, hr spikes, headaches, weight loss and no answers, I was recently directed towards the possibility of this being MALS. I’m not sure if it’s the actual ligament causing the issue or maybe just anatomical changes that came from the surgeries I’ve had but it seems like a possibility. Really there aren’t a lot of other possibilities out there anymore. I have an appointment with the MALS team at UT Health in Houston in April and it cannot seem to come fast enough.

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@deltarobo

I have been searching for the cause of my pain for the last 5 years. It started with a hiatal hernia repair and TIF. There were complications along the way that resulted in me having another hiatal hernia repair two days after the first. More complications left me with an abscess between my aorta and esophagus. After a couple of times almost dying what I was left with was epigastric pain. It hurts worse after I eat. My heart rate will spike. It doesn’t seem to matter what I eat or how much I eat. The pain always comes. It has left me feeling pretty isolated and alone even with an incredible support system. Between the pain, nausea, hr spikes, headaches, weight loss and no answers, I was recently directed towards the possibility of this being MALS. I’m not sure if it’s the actual ligament causing the issue or maybe just anatomical changes that came from the surgeries I’ve had but it seems like a possibility. Really there aren’t a lot of other possibilities out there anymore. I have an appointment with the MALS team at UT Health in Houston in April and it cannot seem to come fast enough.

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I am sorry you are going thru all this with no success in finding an answer.
I have been diagnosed with MALS and have had 2 recent surgeries for it. I had a robotic lap in 2022 and open surgery Nov 2023. It took over 40 tests and procedures before being diagnosed.
MALS can be very difficult to diagnose, so it's important to find a doctor with lots of experience and to do your research.
Facebook has a wonderful page called MALS PALS. It provides lots of information and support from many people who are experiencing what you are going thru. They share their own experience with doctors and procedures and tests that have helped them find answers.. This page personally helped me diagnose MALS and helped me find a vascular surgeon to confirm my diagnosis of MALS. You need to be your own advocate unfortunately. The MALS Foundation also has a page that provides wonderful information and lists of doctors thru out the country who can help. Keep in mind that you may have to travel for this care. Because MALS is so rare you usually don't have anyone in your own area to help. I have traveled from Florida to Ohio for surgery. I'm 3 months Post op and hopefully on the road to recovery. Recovery after surgery can be tough and long, but your whole world can change for the good. It took me 4 yrs to finally figured out and lots of patience.
I hope you find help.

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@deltarobo

I have been searching for the cause of my pain for the last 5 years. It started with a hiatal hernia repair and TIF. There were complications along the way that resulted in me having another hiatal hernia repair two days after the first. More complications left me with an abscess between my aorta and esophagus. After a couple of times almost dying what I was left with was epigastric pain. It hurts worse after I eat. My heart rate will spike. It doesn’t seem to matter what I eat or how much I eat. The pain always comes. It has left me feeling pretty isolated and alone even with an incredible support system. Between the pain, nausea, hr spikes, headaches, weight loss and no answers, I was recently directed towards the possibility of this being MALS. I’m not sure if it’s the actual ligament causing the issue or maybe just anatomical changes that came from the surgeries I’ve had but it seems like a possibility. Really there aren’t a lot of other possibilities out there anymore. I have an appointment with the MALS team at UT Health in Houston in April and it cannot seem to come fast enough.

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So sorry you’ve been through so much. You’re right MALS is difficult to diagnose. However, seeing a vascular surgeon and doing the special ultrasound with breathing protocol is the definitive test for MALS. There are surgeries to relieve and eliminate your issues related to this. Also MALS pals on fb is a great source of support for you. I just joined recently and already feel their cheers of support and don’t feel so isolated. Hang in there. You’ll get through this. I’ll remember you in my prayers. 😊😊😊😊😊😊😊

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It took 16 years to get a diagnosis of mals and I found it by researching. Mayo Connect directed me to mals and I did a lot more research. There’s several Facebook Mals groups with tremendously great information and support. I had open surgery 4 years ago and no longer have mals, but I do have nerve damage in that area. Make sure you check for all vascular compressions. Hang in there!

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@lasirvent

It took 16 years to get a diagnosis of mals and I found it by researching. Mayo Connect directed me to mals and I did a lot more research. There’s several Facebook Mals groups with tremendously great information and support. I had open surgery 4 years ago and no longer have mals, but I do have nerve damage in that area. Make sure you check for all vascular compressions. Hang in there!

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Wow that’s a long time! Glad your surgery helped you. That’s wonderful news. I’ve been reading up a lot on MALS and gone on their official website as well. Mals pals is such a great source as well. Not that I wish this on anyone but it’s good to know there are others that can share their stories with me and offer me support as well. Be well!!!! Thankyou 😊🙏🏻⭐️

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I just want to ask a question. Why does my hearung cut out when I strain to pass gas or a turd? Am I the only one that has noticed this. Everyone just laughs when Inask that question

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I notice this every morning when I sit on the toilet when the furnace fan can be heard. Maybe no one else has ever noticed this before?

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Same with me. Never have given it much thought.

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