Patient Stories

Dottie was diagnosed with Horner syndrome in her right eye in 1973. For seven years, she lived with constant pain around her eye and nose and frequent blurred vision, and several doctors, including neurologists, dismissed her symptoms as migraines or nerves.

In 1980, a routine visit for a sore throat changed everything. Her Ear Nose and Throat (ENT) physician found a lump in her neck. What was supposed to be a simple procedure became an eight-hour surgery when doctors discovered a carotid body paraganglioma wrapped around her carotid artery. A vascular surgeon repaired the artery using a vein from her leg. Dottie left the hospital a week later with a paralyzed vocal cord and a damaged vagus nerve.

Doctors soon found a second tumor on her other side. This one could not be safely removed, so  Dottie had radiation instead. Genetic testing later confirmed an SDHD mutation, and she has lived with regular scans and new masses to watch ever since.

Dottie also lives with lasting effects from her tumors and their treatment, including fatigue and unpredictable changes in body temperature, heart rate, and blood pressure. She manages these with medication, exercise, and support from her care team and from the PPA community.

For years, Dottie kept her diagnosis private, since so few people had heard of it. This summer, she met Jen Marchetti, the Pheo Para Alliance’s Program Manager, becoming the first person with paraganglioma she had connected with since her cousin died of a suspected misdiagnosed pheochromocytoma in 1983.

Dottie spent her career as a social worker at Boston Children’s Hospital, retiring at 62. When asked what she wants others newly diagnosed with pheochromocytoma and/or paraganglioma (PPGL) to know, she said:

“You can go on to have a full life. I want my story to empower others and to let them know there is HOPE.”