My journey began five and a half years ago when I was in a tragic car accident that left me with a traumatic brain injury and the need for ten surgeries over three years. Since that accident, I suffered severe gastrointestinal symptoms, but they were often overshadowed by my surgical recoveries.
In 2024, my GI symptoms drastically worsened. Eating became excruciating. Within two months, I lost 30 pounds. Despite seeking help, most doctors sent me home without guidance.
In April 2025, I was finally diagnosed with Median Arcuate Ligament Syndrome (MALS) — a rare condition where the median arcuate ligament compresses the celiac artery, cutting off blood flow to the stomach, liver, and pancreas. This explained my years of severe pain with eating. Finding a surgeon willing to treat me was difficult, especially with my comorbidity of Ehlers-Danlos syndrome (EDS). After extensive research, I chose a surgeon.
My surgery was scheduled for September 2, 2025. Three days before, the hospital canceled due to an insurance issue, despite the cost and burden of traveling across the country. A week later, they gave us only three days’ notice of rescheduling. We purchased last-minute tickets and made the trip again.
On September 10, 2025, I underwent surgery. The surgeon successfully decompressed my celiac artery from 1mm to 4mm. While the surgical team was skilled, my post-operative care was where everything unraveled.
Before surgery, I had an epidural placed, but afterward, it took the team three hours to deliver the medication — leaving me in severe pain. Their explanation: “It was delivered to the wrong floor.”
The next day, September 11, I developed excruciating abdominal pain, bloating, and difficulty breathing. My abdomen was distended and hard. I could not take a full breath. When I reported this, the surgical fellow told me it was “just slow bowels” and increased my narcotics. She insisted I eat and gave me a strawberry yogurt, which only worsened my pain.
All weekend, my symptoms escalated. Every movement caused tears and cries of pain. I begged for further testing, but each time, the explanation was “slow bowels.” A weekend doctor entered my room without introducing himself and insisted, “It seems like everything is going really well.” When I explained that I was in constant pain, he dismissed me and prescribed Gas-X. When I politely asked for other solutions, he became agitated, yelled, and stormed out. Nurses later apologized and reported him, but I was left feeling belittled, unsafe, and desperate.
Out of sheer frustration, my partner and I began researching my symptoms. What we found matched exactly what I was experiencing: an ileus (post-surgical paralysis of the intestines) and a possible hematoma. With renewed determination, we demanded a CT.
On September 15, the CT confirmed what we suspected: I had a large perigastric hematoma and an adynamic ileus. The ileus was compressing my diaphragm, restricting my breathing, and the hematoma was pressing on my stomach, liver, and lungs. Despite this, the team continued to push opioids — the very medications that worsen ileus.
We were told I would need to stay in the hospital for at least another week. But the hospital had repeatedly assured us before traveling that my stay would be no longer than six days, even with complications. We explained the financial, emotional, and medical challenges of staying longer. My surgeon dismissed these concerns and admitted he withholds complication risks to “avoid patient anxiety.” I explained that withholding vital information caused me more anxiety, not less.
On September 16, against his advice but with no faith left in my care, I left the hospital and returned home under the supervision of my trusted PCP. During our journey home, the hospital called my PCP’s office and berated her nurse, insisting I “wouldn’t survive the flight.”
Back home, a stat CT confirmed a large fluid collection, initially thought to be an abscess. I was admitted to a local hospital on September 21. Interventional radiology placed a drain, but only 2cc of old blood was removed. They concluded it was a hematoma, not an abscess. Despite being in 10/10 pain from the drain, they left it in overnight, and I suffered unbearable pain. The next day, the surgeon removed it, saying she had “no explanation” for my symptoms and dismissed the original diagnosis of ileus as an error.
By this point, I had gone 15 days without eating solid food. I was severely malnourished. The hospital dietitian recommended a PICC line and TPN (IV nutrition), but the surgery team refused. I was discharged again with no plan.
My PCP referred me to another ER to reconsider a PICC line. Again, I was denied, despite continued inability to eat more than a few ounces of liquid daily.
Over the last two weeks, I have endured:
Being dismissed repeatedly despite clear, worsening symptoms.
Being yelled at by a physician when I begged for help.
Inaccurate and misleading documentation of my condition.
Repeated denial of medically necessary nutrition support (PICC line/TPN).
Severe, unmanaged pain despite imaging confirming hematoma and ileus.
A drain placed unnecessarily, causing unbearable pain without benefit.
Financial and emotional harm from last-minute scheduling changes and forced extended stays.
This has been one of the most traumatic experiences of my life. I felt neglected, dismissed, gaslit, and abandoned by the hospital and subsequent hospitals. My only goal is to recover — to be nourished, to heal, and to reclaim my life. I share my story so that other patients and families do not endure the same neglect and mistreatment that I have.
Thank you for listening. I’ll never stop advocating for people like me who desperately need proper healthcare. From surviving to thriving. – Hannah
