Melissa, a nurse from Sandy Hook, CT and a mother to a 16-year-old daughter, was diagnosed with a jugular foramen schwannoma–a rare kind of brain tumor involving nerve cells and which arises from or extends into one of the two large openings in the base of the skull through which structures like cranial nerves pass.

Melissa first started experiencing symptoms including frequent migraines in 2012, but they were misdiagnosed as being due to Lyme disease, partly because she had a visible tick bite diagnosed with the disease. In time, her migraines became extreme and were accompanied by terrible vertigo, and she also started to have trouble swallowing and to have voice hoarseness. In 2016, she had an MRI conducted, and it revealed the tumor.

Her doctors went back to the scan conducted in 2012–and, by comparing it with the 2016 scan, were able to determine the tumor’s progression over time. The doctors brought up many possible treatment options, including radiation and traditional chemotherapy. But Melissa took her time and did thorough research, and ended up watchfully waiting until the time came to take action.

At that point in time, Melissa’s doctors found that her tumor, although benign, was wrapped around and was starting to affect 3 of her cranial nerves, which was why she had been finding it increasingly hard to swallow, and also that her jugular vein and carotid artery were already completely blocked by the tumor.

Melissa chose to undergo a craniotomy, brain surgery that involved the removal of part of her skull so that the tumor itself could be accessed and excised. Her doctors, however, could remove only part of the tumor and were forced to leave in portions that had invaded her brainstem and cervical spine. Moreover, she experienced significant complications post-surgery–she woke up paralyzed on her left side and unable to speak properly.

Melissa is currently undergoing procedures including facial retraining to enable both sides of her face to communicate correctly again, and regrafting of those parts of her face where function has not yet returned. She has also had a Gore-Tex implant injected into her vocal cords to help strengthen her voice. She and her doctors are also continuing to monitor the remainder of the tumor.

Melissa is sharing her story to help put a face to this rare brain tumor and to show that there are medical interventions to counter it. She wants people to realize that life is short and to prize every moment, because, in her words, “Even the little moments are the big moments.”