My Story

I have struggled with stomach issues for all of high school, but one day in September 2021, I woke up much sicker than I had ever been before. I suddenly had a constant knife-like pain under my sternum and right rib cage that became excruciating with any bite of food or even a small sip of water. It radiated horribly to my back, to the point where I couldn’t lean back in a chair and was often accompanied by with overwhelming nausea.

I underwent various tests through September and early October, including ultrasounds, bloodwork, and a CT scan, but nothing was found. Finally, I had an exploratory surgery as an extreme attempt to find the source of the pain. However, once again, nothing was found that could explain my pain with eating. By this point, I had become too sick to attend school and was officially on medical leave. I was lonely, sad, and scared of what would happen to me if we never found the source of my pain.

I spent all of November undergoing testing. I had another CT scan, lots more bloodwork, more ultrasounds, an endoscopy, and a special procedure called an endoscopic ultrasound. Despite all of the effort to find the source of my pain, there was no success. I started twice weekly saline infusions to battle the severe dehydration I had developed due to my inability to eat or drink.

At the beginning of December, I was admitted to the hospital to get a nasogastric (NG) feeding tube in an attempt to halt my severe weight loss and malnutrition. However, I could not tolerate the tube at all. Even at a rate of 20 ml/hr, which is less than a tablespoon of formula over an hour, I became so sick that I needed morphine. After a few days of attempting to use the tube, it was removed, and I went back to eating small amounts by mouth. Around this time, I also went to the Mayo Clinic, a place known to solve difficult medical mysteries, such as my case. But they told me they had no idea what was wrong with me and that I needed to learn to live with the pain. It felt like my doctors were starting to give up on me, and this is one of the worst feeling in the world.

In January, my weight loss and malnutrition had continued to worsen, and my vein access was getting to be too limited to continue saline infusions, so I was admitted once again to try a new type of feeding tube called a nasojejunal (NJ) tube. This time, the tube worked, and I had access to nutrition and hydration after many months without it. However, my pain continued to worsen.

In February, I had one last test to try to find the source of the pain, but it was for an extremely rare condition. But this time, the test did not come back normal and after 5 months of fighting for a diagnosis, I was finally diagnosed with a condition called Median Arcuate Ligament Syndrome (MALS). The only cure for MALS is a surgery where the ligament is released off of the celiac artery and the damaged nerves are removed, so we spent the next month looking for a surgeon.

On March 15, I met with a surgeon and scheduled surgery for March 25. The surgeon also ordered one final test to find out if I had another very rare condition before he did the surgery. And I did. After the test, I was officially diagnosed with Superior Mesenteric Artery Syndrome (SMAS). SMAS would also be addressed in my surgery, in a procedure where all of my intestines would be rearranged to relieve the compression.

On March 25, 2022, I finally had my surgery. It was seven hours long and left me with a five-inch incision. It immediately brought relief and I could finally eat without pain again. I battled multiple surgical complications but after they were resolved, I was completely pain free again.

But this relief lasted under a month, and my horrible pain and nausea returned to full strength. And my ability to eat and drink was gone once again. For two weeks, I relied fully on my GJ feeding tube for nutrition, until the tube became too painful to use as well. Once again, I had no source of nutrition and hydration and no answers to explain my symptoms.

I went back to relying on weekly saline infusions for all of April and May. But at the end of May, my kidneys started to show signs of damage from dehydration and my bloodwork began to show severe malnutrition. On June 1, I was admitted to the hospital to start TPN, which is IV nutrition, a way to hydrate and nourish my body while fully bypassing my failing digestive system.

I spent the summer in horrible pain and relying heavily on TPN for nutrition and entirely for hydration. I ate small amounts to keep my stomach functioning and to help with cravings, but without TPN I would have continued to lose massive amounts of weight and suffer from severe malnutrition. Living with PICC line and a GJ tube in the summer is hard, as they were often fully visible in a t-shirt or bathing suit. I often wanted to hide them but realized there is nothing embarrassing about life-saving medical devices.

After months of waiting, on August 16^th, my mom and I traveled to Baltimore to meet with a vascular surgeon. He listened to my symptoms and ordered an ultrasound to check for the other 2 abdominal vascular compressions, Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS). He completed to ultrasound and on the long drive home we received a call from the surgeon. He confirmed our suspicions and diagnosed me with both NCS and MTS. This meant I would need at least one more major open abdominal surgery.

He also ordered a test called a renal hilar block, where my left renal vein would be numbed, and if it took away my pain, NCS would be confirmed as my source of pain. My mom and I went back up to Baltimore in September and I underwent the procedure. I instantly woke up without pain and spent the next 12 hours eating, drinking, and smiling. I was finally pain free for the first time in months. This confirmed that I needed NCS surgery.

We also talked to another vascular surgeon who looked at my imaging and saw NCS and MTS and told us they were pretty severe. Now we needed to get kidney function tests to make sure that I was a surgical candidate for a renal auto transplant (RAT) where my kidney would be moved, and to meet with a potential surgeon. Luckily, the kidney function test showed what we wanted, and we got an appointment with the best RAT program in the country at the University of Wisconsin.

On November 1^st, I underwent a venogram, a test to visualize my veins, in Wisconsin. This test confirmed severe MTS and NCS, but we didn’t know if the results would be convincing enough for the surgeon to take my case. I enjoyed a fun two days adventuring in Wisconsin with my mom and on the final day we went to meet with the RAT surgeon. He told us that he wasn’t sure if I qualified for surgery with him and that he would need to discuss with a panel and potentially do further testing. However, two weeks after we returned home, we received a call that I would be getting a RAT in January. This call gave me more hope than I had in months.

Currently, I am living on TPN and waiting for my life altering surgery in Wisconsin. I want to share my story to raise awareness for these horrible, life changing conditions while I continue my battle against them.