Before I became ill, basketball was my whole life. I was playing basketball for as long as I could remember. I played on varsity in elementary, middle school, and in 9th grade. I attempted to play basketball through my illness, but eventually it became too much. I enjoyed playing outside with my friends, playing with my dogs, running track, and playing golf with my grandpa. I am currently a senior in high school and just got into nursing school. I work at Chick-Fil-A and am a service trainer working on becoming a shift leader. I enjoy spending time with my friends, family, and boyfriend. I like going to sporting events and going out to eat. How I cope with my illness is by distracting myself and trying my best keep a positive outlook. I’ve been dealing with my MALS illness for 5 years and I certainly have my days where I am not hopeful anymore, but I try my hardest to reset my mind and think positively that going through all of this will only make me a stronger and a better person.
Here is a bit more about my journey:
January 2017- I was playing the best basketball game I had played the whole season. I started to cough and went to the bathroom when I felt like I was going to throw up. On the bus ride home with my teammates, my stomach started hurting like I had never felt before.
October 2018- My first Median Arcuate Ligament Syndrome (MALS) surgery. This surgery was in Chicago and was my first ever surgery. It was laparoscopic, the surgery cut two ligaments that were wrapped around my artery and had been restricting the blood from flowing. It was supposed to stop the excruciating pain I had been in since January.
December 2018- My second surgery. This surgery was to remove my gallbladder and appendix and was in Philadelphia. My gallbladder barely met the criteria to be removed, but I was still having pain and there was a chance this may fix it, so they removed it. There was nothing wrong with my appendix, but they wanted to remove it to keep it from becoming a problem in the future.
May 2019 – My third surgery was in Connecticut. This surgery was another MALS surgery. This surgery, however, took a different approach and was an “open surgery” to remove my Celiac Nerve Plexus and cut the ligaments that had grown back and wrapped around the artery. Doing so would hopefully cut the pain off at the source. This surgery left with me a 5- inch scar above my belly button and took about two months to recover from, with several more months of physical therapy. The pain was gone for a few months, but eventually returned.
Over the next two years, I had multiple nerve block procedures. They required me to go under anesthesia and get two injections in my back to numb the nerves in my abdomen. Each procedure was very hard on my body and the one time they accidentally punctured my lung which made my recovery even more difficult. The first nerve block lasted three months and the most recent only lasted two days. The benefit from the nerve blocks eventually was not worth the toll they took on my body. I went through countless tests through this time, and it was all very difficult and hard on my body and my mind. I had tried everything that the doctors had recommended and even went through having a feeding tube inserted to help me gain weight in hopes that it would help relieve some of the pain.
Along with my MALS diagnosis, I have been diagnosed with Cystic Fibrosis when I was a baby, Celiac Disease when I was 12, Eosinophilic Esophagitis when I was 13, and SMA. I am currently seeking care at Boston Children’s Hospital for Anterior Cutaneous Nerve Entrapment.