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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: Oct 29 2:54pm | Replies (1225)

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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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Replies to "I have been searching for the cause of my pain for the last 5 years. It..."

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. 😊😊😊😊😊😊😊