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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: 10 hours ago | Replies (1229)

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@wheretogofromhere

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?

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Replies to "Hello, my 20-year-old daughter has been sick for 3 years. She started having pain in her..."

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.