Median Arcuate Ligament Syndrome (MALS)

What was the outcome for your daughter? I see you posted this in 2016 .

@astaingegerdm thank for the information. I talked to her doctor last night and she had not heard of MALS but she did research on it and is going to try and get orders for my daughter to get these tests. Unfortunately we have already been denied 3 times at UNC which is one of the top research university hospitals in the country. We are also going to try to get into Duke University hospital. Hopefully we will have better luck getting in there. Your reply was not boring at all. I have read so many stories in the last few days and I feel so bad for everyone especially since for most people suffered for many years before figuring out what was wrong. I'm hoping this is the answer so my daughter doesn't have to go through more years of suffering like so many others have.

@wheretogofromhere
I agree with the advice you received.
I’m another MALS patient. Also many years before treatment. It’s a rare disorder and most physicians have never seen it or heard about it.
However, someone should have searched harder.
The first test I had(at Mayo) was a Doppler ultrasound that showed narrowing of the celiac artery. This artery supplies blood to intestines, spleen, stomach etc.
The pain we get after eating is called intestinal angina- similar to chest pain when coronary arteries are clogged and we exercise. Not enough blood goes to where it’s needed.
As a follow up I had the CT angiogram, confirming the diagnosis.
I had my first surgery by a GI surgeon who removed the Median Arcuate Ligament that attaches to the diaphragm and in our situation puts pressure on the celiac artery.
Relief was immediate. After 6 months symptoms returned and a vascular surgeon placed a stent. The artery never totally straightened out after the first surgery.
6 years later the stent was replaced -easy procedure. So far so good. I have a follow up test once a year.
I feel so bad for your daughter, such misery.
If possible, go to a university medical center.
Hope I didn’t bore you with my description!

Good for her! Keep fighting. You’ll get her healthy. You sound like an amazing mom! She’s lucky to have you. 😊😊😊🙏🏻. Keep in touch. Let me know if I can help
Please.

Thank you @graceym1! She had the eggs with contrast last Saturday and it did not show any issues. I have sent her doctor a message that I want my daughter to have imaging for MALS and to refer us to a vascular doctor. I refuse to accept that this is my daughter's life.

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.

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?

Same with me. Never have given it much thought.

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?

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