Median Arcuate Ligament Syndrome (MALS)

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.

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.

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. 😊😊😊😊😊😊😊

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!

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 😊🙏🏻⭐️

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

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?

Same with me. Never have given it much thought.

Hello, my 20-year-old daughter has been sick for 3 years. She started having pain in her abdomen and vomiting everything she ate or drank in January 2022. By May 2022 she had lost 60lbs and her PCP had an x-ray done of her abdomen and came back and asked if she had swallowed a marble. The radiologist that looked at her x-ray ruled out gallstones. We were referred to a GI doctor who did an endoscopy and colonoscopy, which came back negative, and he prescribed medicine for her nausea, GERD, and an appetite stimulant. None of these meds did anything but the GI’s PA insisted she keep taking them. He would not listen to us when we told him she was not getting better. By October 2022 she was in so much pain that her PCP ordered a STAT CT, but the insurance denied it. It wasn’t until October 2023 that we were finally able to get a CT scan and it clearly showed she had a massive gallstone and 4 days later she had her gallbladder removed. Two weeks after that we went for a follow up with the surgeon, and we thought she was getting better because she could keep food down, but she was still uncomfortable. By December she was back to having extreme nausea and pain every time she ate or drank anything, but the pain was on the left side of the abdomen. The surgeon said it was most likely IBS and gave her meds that did not work. Since then, we have gone to the ER, had 3 referrals at UNC Hospital denied, CT and MRI scans, and been bounced around from doctor to doctor and they just keep prescribing new meds that do not work and say there is nothing else they can do. We went back to her PCP, and she ordered extensive bloodwork (including a full food allergy panel), urine and stool test, and a stomach dump scan (this is the only test that has been done where she actually eats something). All have come back negative (still waiting on the stool test results). My daughter is basically starving to death and unable to live any quality of life. She was never sick prior to all this starting and all these doctors are giving up on her and telling her it is a mental issue. We are at a loss on where to go that someone will listen to all her symptoms, do more than basic testing, and not make her feel like she is crazy. Could MALS possibly be what her issue is?

I’m so so sorry your poor daughter is going through all of this. In order for her to have a definitive diagnosis of Mals she first needs a cta of her celiac artery. It’s just a ct with contrast I had symptoms of Mals for about 5 years. After the 50 th time ending up in the er I begged for the cta. The attending was very compassionate and ordered it. Then I was referred to gi for barium swallow a test where you eat eggs with contrast in them and have x rays over a 4 hour period and recently a ph impedance test. Also referred to a vascular surgeon who specializes in Mals. She did a special ultrasound that confirms Mals. You have to advocate for your daughter. Which is sounds like you are. I’ve had to fight with my hmo to get approved for these tests. Your daughter is very sick and will get better! Just make sure you get stat referrals for these tests so she can get the help she needs asap!!! Good luck. I’ll pray for you both. Let me know how it’s going. If you have any questions just ask!!! I’ll do all I can to help you! Stay strong! Don’t take no for an answer.