Welcome back. I wanted to take some time to put some information about MALs out there. Im going to provide some basic info and leave links at the bottom of the post for you to check out for more information.
What is MALs?
MALs stands for Median Arcuate Ligament Syndrome. There are currently two known types of MALs and those are neurogenic MALs and MALs as a true vascular compression. The form of MALs I have is neurogenic MALs, which means the pain is caused by nerves and not from the lack of blood flow to my organs.
MALs occurs when the diaphragm sits too low resulting in the median arcuate ligament compressing the celiac artery. Around 34-50% have the anatomy for MALs, but only 1% of the population experiences symptoms.
MALs is incredibly hard to diagnose. I have been struggling with GI related symptoms, pain, and more since I was just a kid. Around 2017 my symptoms really began to progress and I did not receive an accurate diagnosis until 2023. Thats 6 years of constant testing, appointments, debilitating pain and other symptoms.
MALs symptoms include epigastric pain, fear of eating, pain when or 30 min after eating, constipation, diarrhea, trouble breathing, vomiting, fatigue, weight loss/gain, and many more.
Treatment for MALs consists of open abdominal surgery to release the median arcuate ligament, reposition my diaphram, and remove the dead/damaged/inflamed nerves. After surgery I will have a 4-6in scar going down the middle of my stomach. Recovery for MALs surgery is measured in months, not weeks. It can take 4-6 months to heal from MALs surgery, for some even longer. You are required to stay in the hospital for 1 week minimum and then stay within an 1hr of the hospital for the next 1 ½ weeks.
What does MALs feel like?
MALs pain feels like a handful of knives are being jabbed into my upper abdomen, it feels like my ribs are being broken by a hammer, slowly. I wake up gasping for air and by the end of the day I can barely speak anymore because it is so hard to breathe. MALs causes pain in my body throughout my entire rib cage, front and back. I can turn maybe 1-2 inches before the pain is too excruciating to continue. MALs causes me to feel pain directly on my spine, I also get a weird burning and heavy sensation in my ribs and upper abdomen. Additionally, the bloating I get daily is very severe.MALs pain is compared to end stage pancreatic cancer pain. Walking, sitting up, drinking, eating, driving, wearing certain clothes, all cause extreme MALs pain for me and most other MALs patients. There have been times where I pass out just from the pain itself. It is hard to describe how severe the symptoms of MALs are. MALs also cause malnourishment in many patients. I experience malnourishment. I lost my period in November, have no energy, my skin coloring is gray and dull, my anxiety and depression are much worse, the brain fog is so severe..like real severe I often have nothing going on in my brain it just feels fuzzy and black. Malnourishment is very serious.
I know this was a little different than my normal content but I thought it was important to get that information out there. The more awareness and knowledge we can share will only help patients like me and future MALs patients. Hopefully one day it won’t take years for patients to get an accurate diagnosis. MALs is a progressive illness and the longer it goes untreated the worse symptoms can get. A huge symptom of MALs is malnourishment and the longer someone goes severely undernourished the more irreversible damage caused. Early diagnosis = a better quality of life. Thank you for your support.
Leave a comment and let me know what other questions you have about MALs and how it affects my daily life.
Links to check out:
https://malsawareness.com/mals
Chronic Illness Chronicles 
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