Jennifer E.'s Story
In 2022, I was diagnosed with Nutcracker Syndrome and Pelvic Congestion Syndrome after going to the ER for what I believed was a ruptured ovarian cyst. A CT scan revealed diagnoses that instantly turned my life upside down. Nutcracker Syndrome is an extremely rare vascular compression disorder—so rare that even NORD (the National Organization for Rare Disorders) does not have an estimated percentage of the population affected.
In April 2023, I underwent an open hybrid kidney autotransplant surgery to relieve the compression causing Nutcracker Syndrome. The surgery lasted 8.5 hours. My renal vein was unusable, so my ovarian vein was used instead to reattach my left kidney. During the operation, my entire blood flow was rerouted. Because of how rare both the condition and the procedure are, I was approximately the 100th patient to undergo this specific operation. Recovery took nearly 12 months. Both this surgery and my later nMALS surgery were performed by the same surgeon—a specialist in Nutcracker Syndrome and nMALS—who was, fortunately, based in Baltimore at the University of Maryland.
In April 2024, I was diagnosed with neurogenic Median Arcuate Ligament Syndrome (nMALS), another vascular compression disorder that affects approximately 1% of the population. The following month, in May 2024, I had open nMALS resection surgery, beginning an estimated 18-month recovery process.
In February 2025, I was hospitalized for suspected complications of MALS, including an inability to eat properly or stay hydrated. During my 23-day hospital stay, Superior Mesenteric Artery (SMA) Syndrome, another vascular compression disorder, was discussed. I required multiple feeding tubes while hospitalized, ultimately ending with placement of a GJ tube to support nutrition. I remained on tube feeding for five months and was able to regain nearly 15 pounds.
In November 2025, I had a consultation with an SMA Syndrome specialist in Blacksburg Virginia and was formally diagnosed. I am scheduled for surgery in January 2026 in Virginia, where I will undergo the Alvear–Fowlkes procedure to correct SMA Syndrome. This will involve a 10-day hospital stay and a major, life-saving operation. Because I live in Maryland, I’ve also arranged to stay nearby for two weeks after discharge to ensure everything is stable before returning home.
Living with multiple rare vascular compression syndromes has been physically and emotionally life-altering. My journey has shown me how critical awareness, early recognition, and access to experienced specialists truly are. By sharing my story, I hope to help others feel less alone, encourage patients to advocate for themselves, and bring greater visibility to conditions that are often misunderstood, overlooked, or dismissed.
