I know without a fraction of a doubt that my doctor cared and wanted the best for me, but her knowledge and experience just wasn’t the right tool for the job. I didn’t know where I was going or what I was looking for, but I was finally ready to take a leap of faith and trust that there was a doctor out there who did have the right tools for my condition.
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In December of 2016, my mom and I made the trip from Philadelphia to Herndon, Virginia to meet Dr. Abdallah. He spent almost an hour with me that day talking through my symptoms, my priorities, goals, and my medical history from MY perspective, instead of the version my former doctors had determined, then asked me why nobody was trying to figure out the reason for all my symptoms. I sat speechless for a second, trying to wrap my mind around just how far we had strayed from the very question that set us on this journey in the first place… ‘Okay,’ he said, ‘Now we are.’
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Over the next few months we ran test after test and trialed several treatments, but nothing could ease the pain. At this point, I was sustaining myself with nutrition I received through a feeding tube surgically placed in my abdomen to bypass my stomach and was starting to come to terms with the possibility that I was going to have to live like this for the rest of my life.
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By the summer of 2017, after five years of dead ends and more questions than answers, I was ready to give up, but Dr. Abdallah said he had one more idea. He took me across the hall to look at the area where my pain was, towards the middle just below my ribs, with the ultrasound. My feeding tube made it difficult to see the whole area, but he found that I had elevated velocities in my celiac artery, which led him to believe there could be something compressing it.
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Finally, a clue! Our next step was a CT angiogram, but it had to be at a hospital near his office where he knew they would do it correctly—take the images on the exhale. Yes, that meant another 3-hour train ride down to Virginia for a 20-minute test, but when you’ve been sick for so long with no explanation as to why your body was slowly shutting down and are lucky enough to find even the smallest glimmer of hope, you find a way to keep that hope alive.
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The train ride down to my follow-up appointment felt like an eternity. I had become so accustomed to the disappointment of hitting dead ends that I just wanted to get it over with as quick as possible. Dr. Abdallah walked into the exam room with his computer pull up the results of my CT Angiogram… he looked up from the computer and just says, ‘this is big—we found it. You have something called Median Arcuate Ligament Syndrome, it’s very rare, but we can treat it with surgery and I know an excellent surgeon who will take care of you.’
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Median Arcuate Ligament Syndrome (MALS), which has also been called Celiac Artery Compression Syndrome or Dunbar Syndrome, was first discovered in the 1960s, but by 2012 when my symptoms began, there were had been fewer than 500 MALS corrective surgeries. I have lived my entire life with an anatomical anomaly—my diaphragm sits too low, which in turn lowers the median arcuate ligament onto the celiac artery and celiac ganglion nerves. With every breath I take, as the diaphragm rises to exhale, the ligament compresses my celiac artery and surrounding nerves. This interrupts blood flow and, over time, causes the nerves to get inflamed. For me and many others with this abnormally, it can cause upper-abdominal pain (particularly after eating), persistent nausea/ vomiting, exercise intolerance, and significant weight loss that may mimic more common GI conditions, but unlike those conditions, MALS won’t show up in bloodwork or in standard tests/scans.
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