Life after MALS

Most of us with MALS (Median Arcuate Ligament Syndrome, also known as Celiac Artery Compression Syndrome) got so sick that when we were finally diagnosed, we were seriously grateful to not feel crazy anymore. After years of unexplained malnourishment, pain, and fatigue, the medical community actually presented us with a fix, albeit a serious one: open abdominal surgery. Surgery for MALS is a big deal. It is similar in procedure to an Abdominal Aortic Aneurism (AAA) repair - and in fact, some folks with MALS end up with aneurisms that need repairing - but with the added trauma of clipping the median arcuate ligament back to the spine (which involves lifting and spreading the ribcage - ouch!), and snipping a bunch of damaged nerves that are part of the largest nerve bundle in the autonomic nervous system and innervate most of the digestive tract (the celiac ganglion).

Once all that happens, and surgical recovery gets less hellish (and it is ROUGH), it's on to phase 2: teaching the digestive tract to work again. You see, after years of inadequate blood flow and nerves being irritated nearly nonstop (every single breath in and out raises and lowers the diaphragm, causing the MAL to slide up and down on the nerve bundle, like a guitar pick on a guitar string), the digestive tract is highly dysfunctional! We have to eat carefully, avoiding food triggers and adding new things slowly. Probiotics, digestive enzymes, small meals, low fiber.... Imagine every day is like the day after a stomach bug. 😧 Some people develop pretty serious side effects from surgery, such as pancreatitis, dumping syndrome, and POTS (Postural Orthostatic Tachycardia Syndrome), to name just a few.

So, for many of us, life after MALS is way better! But it's still hard. It's hard in a different way, but it's still hard. It's IBS, food sensitivities, dizziness, nausea, migraines, and new pains. We are generally pretty doggone grateful for surgery, and life without MALS, but we still aren't normal. And oh, how we long for normal! When you ask how we are since surgery and we say, "GOOD!" with a smile, we mean that. But GOOD is relevant. "Good" is life without MALS. "Good" is better than before MALS surgery. But our defintion of good might be quite different from yours. For us, it's eating more than dry cereal or baby food, getting out of bed in the morning and staying up for the whole day, leaving the house and attending functions we would otherwise have missed, taking walks that were impossible with MALS, performing housekeeping tasks and running errands that used to wreck us, and feeling like we have some semblance of a life worth living. We still have to think about food way too much. We still have to plan for consequences of surgery or eating the wrong foods or being too active. We're better, but we're not well. Years of nutritional deficiencies have take their toll on our overall health, and we're trying to be grateful that we aren't still getting worse while doctors once again scratch their heads at our "post-MALS" symptoms.

We could use your prayers.

While MALS is rare, there are thousands of people suffering with it. Thousands of people trying to get answers, and thousands of people struggling post-op. We need awareness of more than just the condition and the surgery; we need awareness of how to gain back our health after MALS. And we need the medical community to find MALS sooner so that the next patients don't suffer for as long and face the same consequences of long-term MALS. Let our voices be heard and our suffering bring about changes in diagnosis and treatment of MALS. We seriously wouldn't wish MALS on anyone. (Well, a "day in the life" might open some eyes and get changes rolling, so.... 😏) Thank you for your continued support. Thank you for your understanding as we speak about MALS to raise awareness. And thank you for taking the time to read this lengthy description of a few post-MALS issues. This is simply my experience with MALS and some of what I've seen in my fellow MALS Warriors. 💜🦄