‘No one believed me. ‘You’re a teenage ballerina refusing food. This is clearly a case of anorexia.’ Every doctor gave up on me, except one.’: Woman with MALS misdiagnosed for 20 years

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“My name is Olivia, I’m 19, a former ballet dancer, and I have a rare congenital anomaly called Median Arcuate Ligament Syndrome, or ‘MALS’ for short. I was born with a diaphragm, which the MAL is attached to, that sits too low and instead of moving up and down my aorta when I breathe, like it’s supposed to, it moves up and down on my celiac artery and celiac ganglion nerves. Symptoms of this vascular compression, such as nausea, shortness of breath, epigastric pain, beyond debilitating fatigue, bloating, belching, etc. are always exacerbated by eating and exercising. These symptoms love to ‘play games’ and mimic many different gastrointestinal issues, making its diagnosis a tough nut to crack. This story is all about my nearly 20-year story of navigating through MALS, from dismissal to diagnosis to surgery.

Courtesy of Olivia Vessillo

For as long as I can remember, I’ve been nauseous. I always felt it, I always hated it, and never received any help from pediatricians or doctors until now. A nearly 2-year-old shouldn’t know the word ‘nauseous,’ but I did. An adolescent shouldn’t be so bloated that she looks like she’s in her third trimester after eating a small snack, but I did. A teenager shouldn’t constantly burp louder than a sailor, but I did. A young adult shouldn’t have constant epigastric abdominal pain that has been likened to that of end-stage pancreatic cancer, but I do. Finally, nobody of any age should have to be dismissed and degraded by medical professionals, the very people trained to help, like I was. Every MALS patient has experienced this to varying degrees and it must stop. We are not pain medication-seekers, we are not overly dramatic, we are not faking it for attention, nor do we have a low pain threshold. We are not constipated, we do not have IBS or ‘Chronic Abdominal Pain,’ and for the love of God, this is SO NOT psychosomatic! It is my hope that sharing my story helps at least one person forced to suffer through this, be it through the reader themself, a friend or family member who mentions this article to someone suffering, or perhaps even by educating a medical professional who otherwise wouldn’t have known about this anomaly.

Now, as I said, I’ve been nauseous for as long as I can remember. I can recall being in kindergarten and begging my parents to let me stay home from school because I was ‘so nauseous.’ Same went for playdates and sleepovers! The plea never worked, but why should it have? A young child presenting with school refusal and symptoms that mimic anxiety… Well, let’s just say we all–including myself for a while–assumed it was a horse (anxiety) and not a unicorn (MALS) that was the root cause. What nobody seemed to understand was that I WANTED to go out on playdates with friends and I WANTED to go to school like all my peers, but the problem didn’t lie within social or separation anxiety. It was because I was feeling incredibly sick all the time. The pediatricians all told me it was anxiety. It was ‘in my head’ and I needed to ‘push past it and challenge myself.’ They even told my mom to carry the ‘tough love, cry it out’ method with a 6-year-old, who was old enough and absolutely did know well enough than to throw a fit about going out. Things slowly continued to worsen throughout my childhood, then began to really pick up speed at the age of 12.

As we all know, 12 is the age of middle school! A transition and change that was the perfect storm for ‘anxiety’ to increase. Everyone still insisted anxiety was the cause of my problem. Middle school and I didn’t jive, and after my ‘anxiety’ didn’t go away after about three weeks, the school staff began to get very frustrated with me. The guidance counselor would become exasperated and snap at me, and nobody would let me contact my parents. Some teachers didn’t let me go to the nurse, and when I was allowed, the nurse rudely forced me back to class after I would get sick. I wasn’t even allowed to leave the cafeteria and go to the library during the lunch period to escape the smell of food combined with the relentless, overwhelming sound of kids yelling. Finally, when they got especially frustrated, they threatened an innocent 12-year-old with the notion that if I was late or refused to come to school, that they would send the campus police to my home and forcefully drag me to school in the back of a police car. This experience, combined with my severe MALS symptoms DID cause me to develop anxiety disorders, GAD, OCD, and PD to be exact. It was all becoming too much. I lost twenty pounds and a once sharp and witty personality was replaced by a sad, anxious lump. Two months into the school year, my parents pulled me from school and began homeschooling.

It was around this time that, by a crazy turn of events, I discovered dance. More specifically ballet. I begged my mother to let me begin classes and after some serious persuasion on my part, she said yes. Thinking it would only be a hobby, my mother, once a dancer herself, signed me up and helped me into my first leotard and tights. Well, as it would turn out, I had a serious talent for ballet and a work ethic and drive unlike any of my peers. As months passed, I continued to search for and find ways to work harder, propelling me through the training ‘ranks.’ Three years of hard work later, I obtained my first professional training program spot with a merit scholarship. My MALS and anxiety were still rulers of my life, but my love and dedication almost let me escape what I was feeling. Almost.

Courtesy of Olivia Vessillo

A year later, at the age of 16, I should’ve been in top shape, but it was quite the contrary. I started to find that the harder I worked, the more stamina I lost, the weaker I got, and the more my body would physically swell. After this, we began the long journey of ditching general doctors and seeing specialists, initially (ironically) because we all thought I couldn’t lose weight. I kept gaining, gaining, gaining despite exercising like I was and hardly eating a thing due to my nausea and discomfort. It would eventually be revealed that this was fluid retention, not fat. It was my body’s desperate attempt to deal with severe nerve inflammation and damage. It was around this time that the horribly loud and embarrassing belching developed, and when the abdominal bloating and nausea became even WORSE. At that point, I’d given up on nausea. Too many medical professionals told me it was anxiety and I was now convinced of it too. They were doctors. They had to be right. Right? WRONG! During this time, I also began feeling severe transient abdominal pain (along with all my other symptoms) that would seemingly come on out of nowhere.

I must’ve been tested for everything under the sun. I had enough blood taken to create five more of me. I was put through scans, scopes, ultrasounds, breath tests, spit tests… you name it, it was tested. But it all always came back completely normal! That’s when the specialists and/or doctors would grow angry with me. (Noticing a pattern here?) Some spat out the downright nastiest things because of their bruised ego, which blossomed from the fact that I was not an easy case and, in their eyes, difficult and attention-seeking. I won’t share the cruel words said to me, but here are some things that were commonly tossed out: ‘I really don’t think you need these tests. I believe your symptoms are psychosomatic… here’s a list of psychologists in the area.’ ‘This is clearly a case of anorexia. You’re a teenage ballerina refusing food. Have you talked to a therapist?’ ‘There’s nothing wrong with you, I’ll write you a prescription, but you don’t need it.’ And, my favorite, ‘You’re constipated.’ Plot twist: I totally wasn’t. Every medical professional gave up on me, except the one whom I consider to be my primary care. She was the only one who believed me 100% and still looks after my care to this day.

Courtesy of Olivia Vessillo
Courtesy of Olivia Vessillo

Eventually, in 2018, things became bad enough that doctors could no longer deny I was sick. I had just joined a company as a trainee and it seemed as if my career (and my world) that was advancing so quickly came crashing down around me. My symptoms rapidly worsened until things reached an all-time high on the night of December 20th into the 21st of 2018.

After coming home from a full day of Nutcracker shows, my stomach hurt in the way it did every now and then. I kept racking my brain for an answer as to why it hurt, but nothing made sense. Finally, I decided to try to eat something. This was truly my worst mistake.  The pain got so bad, I had to literally crawl to my bed, where I somehow managed to drift off. At 1:30 a.m., my eyes shot open, with the worst pain I’ve ever felt in my life located in my upper stomach. I couldn’t move, I couldn’t breathe, I couldn’t talk. I thought, with no exaggeration, that I was dying right there. I waited a bit to see if it would subside, but it only got worse; a 9.5/10 on the pain scale. I ended up calling my mom, who was sleeping just across the apartment, and whispered into the phone that something was terribly wrong and that she needed to get in my room. Obviously, angst-stricken and concerned, she asked what was wrong and what I wanted to do. Me, thinking I was just ‘being a wuss,’ and that it was potentially just a stomach bug, I told her I wanted to wait until the morning to see if it improved at all. Well, I suppose it did, to an 8/10. And stayed there for quite some time. After that, I continued to dance and perform as things got worse. Eventually, five months later, I developed tachycardia, legs that would give out in the middle of class, and muscles were too fatigued to lift my arms or allow me to open my mouth to speak. It reached a real head when I would come close to passing out every day. Not long after it got to that point, I realized I had to confide in my parents about exactly how bad things had gotten, and they convinced me to pull out of my rigorous schedule in fear that something was seriously wrong.

Now comes the diagnosis! Backtracking a bit, one night in October of 2018, my mother and I came home earlier than anticipated and made it back just in time to watch Grey’s Anatomy (Season 15, Episode 05 to be exact). In this episode, a woman came in with a three-ring binder full of tests that had she had been submitted to over and over, all of which came back with normal results, and none of them explained her upper abdominal pain. Long story short, they exhausted all the tests they had and didn’t find anything wrong. Finally, the woman grabbed a sandwich and began to eat it while crying and pleading the doctors to believe that it wasn’t all in her head. With perfect Hollywood timing, after she finished her eloquent plea and took a few bites of her sandwich, not two seconds later, did she call out and hunch over in severe pain. The doctors promptly diagnosed her with a rare condition called ‘Median Arcuate Ligament Syndrome!’ After the episode, my mother and I sat in total silence. We met each other’s gaze with cautiously optimistic and completely shocked expressions. Could this be it? We filed it away in the back of our minds because, at the time, we were still ruling things out while pursuing my ongoing health issues that were, admittedly, wearing us out completely. We soon learned that even with this little mustard seed of a discovery, next to no doctors knew of MALS, so I would remain misdiagnosed, dismissed, and passed off, for another full year.

A year later, in October of 2019, I was experiencing continually worse excruciating pain and nausea, eating nothing, barely drinking, and tending to the heart monitor I was being forced to wear. That same day, my mom just-so-happened to speak to a long-time family friend over the phone. Hearing the exhaustion and defeat in my mother’s voice as she finally revealed, in detail, all that we had been through with my health struggles and that though we were inclined to believe it was ‘MALS,’ nobody would believe or help us. At that moment, our friend decided she couldn’t just hang up and let us continue to struggle. She felt compelled to do something, so she did. She did something that would change and even save my life.

She conducted some research and accidentally came upon the contact information of the best MALS surgeon in the field. She made a call on October 3rd (my birthday) without our knowledge, and got me into the surgeon for a consultation that same month! We were accustomed to waiting months upon months for appointments, so this was a very big deal. After everything was confirmed, she called us and proceeded to give me the best birthday present I’d ever received: an appointment with Dr. Hsu, a top-tier vascular surgeon and MALS specialist in Connecticut. That month was filled with angst and paranoia. We had always been told, ‘Oh, it’s this,’ which was inevitably followed by, ‘Oh, no, sorry. It’s not this. I can’t help you.’ I prayed and prayed for this diagnosis to be the one. I was growing worse, I had lost 40 pounds, and I was getting tired. Tired of all the doctors and specialists. Tired of all the tests and bloodwork. Tired of living my young life tethered to my bed because even walking caused me shortness of breath and pain. Well, ask and ye shall receive. On October 19th, 2019, I met with Dr. Hsu and received my first ever accurate diagnosis. I HAD MALS! My family and I practically rejoiced in that exam room, and I sobbed tears of joy as we discussed ‘next steps.’

Courtesy of Olivia Vessillo

There was one final test that had to be done to prove that I was a surgical candidate: A Celiac Plexus Nerve Block. In layman’s terms, this is a procedure where two needles are inserted on either side of your back, guided by CT imagery, puncture your celiac ganglion nerve bundle (the bundle that is damaged by the ligament), and then a numbing agent is injected. If I was a surgical candidate, this block would completely relieve me of my symptoms. If I was able to eat and press on my stomach without a trace of misery, I was in the clear and we’d schedule the surgery! The hospital called the very next morning and scheduled me for that following week. I could hardly keep myself contained! Finally, block day rolled around, and I was ready! I even came equipped with a ‘menu’ chock full of food I couldn’t wait to eat, which my amazing father agreed to go out and get for me.

Unfortunately, the first block didn’t exactly go as planned, and I didn’t even get the block administered. I had a severe adverse reaction to the CT contrast dye before any needles were even inserted. As soon as the dye was administered, I coughed, had trouble breathing, my heart rate skyrocketed, blood pressure plummeted, and I felt like I was going to pass out. They called an emergency code, ran with me back to the recovery bay where I was met with the faces of twenty perplexed, panicked medical professionals and two chaplains at the end of my bed, right next to the defibrillator. My mother was brought back for all of two minutes while I was fighting to stay conscious, then was whisked away to the ‘quiet room,’ away from all the other people in the ‘traditional’ waiting room. After that, a nurse by my side kept asking me questions to keep me awake and alert, occasionally throwing in the ever-famous, ‘Stay with me, Olivia.’ As my vitals continued to worsen, they all were trying to decide what to do in order to stabilize me. It wasn’t a traditional anaphylactic shock, so normal methods of treating a reaction weren’t going to work. I heard the words ‘ICU,’ ‘ER,’ ‘Get Ready for a Code Blue,’ and the names of a plethora of different steroids that were being pushed through my IV. I could feel my consciousness slipping, so I began doing my own form of grounding to keep myself alive and focused.

Eventually, thanks to the outstanding hospital team, staying awake and breathing suddenly became easier, my heart no longer felt as if it was going to explode, and the sensation of dizziness began to subside. You could feel the collective sigh of relief as my vitals began to stabilize and the machines I was attached to stopped beeping like they were alerting the floor to a fire. They brought me to the ER and the chaplains escorted my eerily calm and collected mother to my little room. Unfortunately, my dad had to receive a call from my mother while picking up the food (which, heartbreakingly, was of no use to me anymore) and he sped back to the ER to meet us. He rushed from the local diner and met us in the ER, relief washing over his face as soon as his eyes met mine. I spent the rest of the day into the night in the ER, hooked up to so many different machines you’d swear I came with free WiFi!

Courtesy of Olivia Vessillo

Eight hours after being admitted, by the grace of God, I was able to get dressed and walk out of the ER with both my life and a prescription for prednisone. We were all disheartened and unsure of what would happen next. They needed to do this procedure, but they also needed the CT dye to guide them to ensure they could see what they were doing.

The next morning, I felt like I was hit by a semi. My chest was so sore I couldn’t yawn and I was just starting to fully process what happened the day before. Then we got a call from the hospital saying they had pulled strings, and that I was going to repeat the procedure, fully sedated, with different contrast in three days’ time. Before I had time to react, my brain sent me spiraling into a panic attack, which was definitely not great for my heart. But my parents saw me through. We had to get this done if I wanted surgery, and surgery is the only way to resolve MALS. The next few days were nothing short of hellacious and filled with loads of adrenaline. When the day came, it got to a point where I almost passed out in the hospital halls. After I was prepped, I met with the new members of the team: an anesthesiologist and a different, but even more fantastic interventional radiologist. I played an endless stream of Queen music, the only thing that possessed the ability to calm me down while I was waiting. I felt ready. And this time, nobody left the hospital for food, Uber Eats did that job for us!

Next thing I knew, I was awake and crying tears of joy. I was no longer in pain, didn’t have any nausea, and I was alive without any complications! I even noticed I could move, walk, stand up straight, breathe, and stretch–things that usually cause pretty bad pain–with ZERO symptoms! After the tears, I got straight to work. For as long as I can remember, I’ve been on a diet of dry crackers and 0% Greek yogurt, so needless to say, I went ALL OUT! Some pancakes, eggs, hash browns, sausage, bacon, coffee, donuts, a burger, fries, onion rings, and a coke later, I was quite stuffed, but there was no pain and no nausea! I couldn’t wait to see Dr. Hsu and schedule my surgery. And schedule we did. Everyone in his office was amazing, from the women behind the front desk to the lovely surgical coordinator to the nurse to the wonderful office manager!

Courtesy of Olivia Vessillo

After going home with a set surgical date that already felt so much like a blessing in and of itself, I received a phone call exactly one month later. That blessing of an earlier surgical date than we expected? It was moved up by a whole month. There was a cancellation and they called me to offer up the spot. They were so kind to us and told us that we never left their minds or their hearts and that I was the first they offered the spot to. Believe what you will, but I truly believe that an angel worked its wings that day on my behalf. I am now scheduled for surgery in January of 2020 and am excitedly waiting to start this new year with one less ligament.

Please, if you take nothing else from this article, remember me and remember my story. It could help you, a friend, or a family member, and save you/them years of suffering. If you or someone you know has been to more than one GI, are experiencing similar symptoms, and all of your tests come back normal, look into MALS. And if you’re a medical practitioner reading this, familiarize yourself with MALS and be open to new and rare diagnoses; that mindset and research could save someone’s life and quality of it.”

Courtesy of Olivia Vessillo

This story was submitted to Love What Matters by Olivia Vessillo from North Carolina. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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