My story spans several decades. I most likely had MALS as a teen. I remember having intermittent symptoms as a high school student, especially during PE (hello, exercise intolerance!) when running would give me debilitating pain, nausea, and sometimes cause vomiting. On and off for the rest of my teens and twenties, symptoms would flare up and die back. I assumed I had a sensitive tummy.
In my thirties, I developed some food intolerances, an autoimmune disease, and Celiac Disease, and started working to clean up my diet. Some things would improve with "better" eating habits, but others would rise up. One thing stood out for my entire life: protein and fats were harder on my digestion, certain proteins weren't tolerated at all. Anything that was supposed to improve digestion made everything much worse. Still, I thought I was sensitive and took the IBS diagnosis from docs, without any plan to help since everything they gave me to try made it worse. Then I developed the early stages of a connective tissue disorder right after having a tick-borne illness and mono in the same month, and my health deteriorated quickly. Looking back, the mono and tick illness likely kicked off the auto-immune connective tissue disorder, and the connective tissue inflammation ramped up my MALS symptoms because of ligament and nerve involvement.
Within 4 years, I had visited numerous specialists, spent so much money on meds and supplements and diets, and went to the ER with heart attack symptoms every few months. I decided I was probably going to slowly starve to death and questioned how doctors could keep sending me home while I was losing weight and telling them I couldn't eat. I remember later, when reading the symptoms of MALS, realizing that I said all the right things: it hurts right here (pointing to the spot under my sternum) after I eat; I can only eat easy-to-digest carbs and only in small doses; I'm nauseous all the time, except for the few minutes after I wake up each day; I can't eat if I have to leave the house that day because of the nausea and pain; an hour after I take XYZ medicine that you gave me to help my symptoms, I get pain right here; I can't exercise but especially have to rest after eating; I'm losing weight and fighting significant fatigue, etc.
On one of my many visits to the ER for heart attack symptoms. I didn't want to go but my daughter said my coloring was off. A very thorough, old-school doctor went through the 'old fashioned' way of checking everything, including waiting the 4 hours before discharging, and when his shift was over and the younger doc was signing me out because 'everything was normal,' I mentioned having Celiac Disease and never knowing if that was contributing to my symptoms. I was used to being sent home without answers and I felt silly for being there - again. For whatever reason, this was the moment he realized he should share what the apparently-old-school radiologist had actually written in my CT report: significant narrowing of the celiac artery consistent with Median Arcuate Ligament Syndrome. The recommendation? Patient should follow up with a vascular surgeon ASAP. That's when it all changed.
I was referred to a local vascular surgeon, but I started doing my own research and realized how rare this condition was. Surely this local dude wouldn't know anything about this?!? So I scheduled an appointment with a specialist in another state, which would be 4 months away. My 20 pieces of dry cereal spread out over the course of the day got me through the week to the initial consult with the local vascular surgeon, who turned out to not only KNOW about MALS but to have done his residency with a surgeon who taught him how to treat it - and he had done numerous of them since being in practice! Whew, that was shocking and amazing and now I was scheduled for surgery!
I had an open surgery with MAL resection and celiac artery bypass since my artery was scarred (this happens after a long time of compression), and my recovery was pretty textbook. I spent a few days in the hospital, went home with some pain meds and told to walk as much as possible. I had scheduled a follow-up appointment with my gastroenterologist for a month after surgery so that we could go over a full recovery plan, and she put me on some IBS meds and a special diet so my digestive system could 'learn how to function with proper bloodflow.' This helped for 6 months, and then I was pretty much eating normally, with the exception of some foods that had become triggers for IBS. The next year would show intermittent issues that sent me back and forth to the doctor again, and we have come to realize that my pancreas and gallbladder are permanently affected by the years with improper bloodflow and nerve involvement. I take pancreatic enzymes every time I eat, I have lots of food intolerances, and I will have to have my gallbladder removed at some point in the very near future. But I can eat more than dry cereal, my nausea is a thing of the past, I am working full time again, and I can exercise without pain. MALS disrupted my life in a significant and lasting way, but it has also taught me that the very smallest things, things like taking a walk on a nice day, eating a holiday meal with family, and taking road trips, are things to be appreciated and never taken for granted.