Median Arcuate Ligament Syndrome (MALS)

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.

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.

@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!

@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.

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

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.

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.

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. ❤️🙏🏻

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

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