On February 1st, I was given permission to remove my NJ tube for the series of testing that would be occurring later in the month. I was thrilled to have a tube free face and to spend time with my friends again, though I was never strong enough to do anything but sit on the couch and watch TV and talk to my friends and family. I also resumed my saline infusions twice a week to maintain my hydration. These infusions were crucial for my health, but I began to face issues with vein access due to my frequent need for IVs and my lack of usable veins. My arms were covered with bruises and poke marks. I spent the first two weeks of February baking, watching basketball, spending time with friends, and eagerly awaiting February 17th, the day where I would find out if I had Median Arcuate Ligament Syndrome through a celiac plexus block and an ultrasound. If the block took away my pain and the ultrasound revealed elevated velocities in my celiac artery, I would finally have a diagnosis. February 17th also happened to be MALS awareness day. The timing was perfect.
I could barely sleep the night before my block. It felt like the night before Christmas. When we arrived at the hospital in Greenville, SC, I went in first for my ultrasound to look at my celiac artery. During this ultrasound, the velocities of blood flowing through my celiac artery would be measured. If Median Arcuate Ligament Syndrome is present, the artery will be compressed, and the velocities of blood flowing will be elevated in the artery to account for the narrowing. The ultrasound was excruciating, and I had no clue what the results were as the ultrasound tech is not allowed to tell. I wouldn’t know the results until I woke up from my nerve block.
Next, I went into the pre-op room to get ready for my procedure. The hospital had a service dog who sat with me while I got my IV and calmed my nerves for the procedure. I was wheeled back to the procedure room and was moved onto the table where I would be having my procedure. My heart rate shot up as I passed the tray of massive needles that they would be using. I laid down on my stomach, as the needles during the nerve block go in through the back. My heart pounded as I drifted off to sleep, anxious to wake up and find out if the block worked and the results of my ultrasound.
I woke up with a very sore back, but immediately, I could tell my stomach pain was gone. The constant pain I had been experiencing for the past 5 months was suddenly gone. I started crying, overwhelmed from joy. That is when my parents told me that my ultrasound had revealed elevated velocities as well. It was official: I had a diagnosis of Median Arcuate Ligament Syndrome.
As soon as I was awake enough to get dressed and into the car, my family and I headed to get my lunch. The nerve block would allow me to eat pain-free for a few hours, and I was eager to get my first real meal without pain since September. I chose a Chipotle bowl. I ate it on the way back home and I can firmly say it was the best tasting meal I have ever eaten. I couldn’t eat more than a third of the bowl, due to nausea and since my stomach had become so small from not eating. When we got home, I had a piece of a cookie, but the block was beginning to wear off.
Within a few minutes of first feeling the pain return, it came back just as strong as it always was after eating. I was in excruciating pain, from the combination of stomach pain from eating and back pain from the two massive needles that had pierced through my back. But every bit of pain was worth it. I finally had a diagnosis. Now it was time to find a surgeon, as the only cure to median arcuate ligament syndrome is surgery to release the ligament and remove the damaged nerves. We had fought part of the battle, but it was far from over.
Kate's Courage 