Summary
– A small lump in Jayme Cohen Lynde’s neck led to diagnoses of a carotid body tumor and a skull‑base paraganglioma.
– Removing the second tumor required a complex, 24‑hour operation that left her unable to speak for months and needing extensive rehabilitation.
– Years later routine follow‑up found a slow‑growing recurrence and a new tumor; after a second opinion she and her physician chose monitoring over immediate radiation.
The discovery
In 2000, while finishing her junior year at Michigan State University, Jayme Cohen Lynde felt a small lump on the side of her neck. She had few symptoms but saw a specialist, who diagnosed a carotid body tumor — a rare, typically benign growth near the carotid arteries. Doctors told her she could finish the school year and keep an internship in New York before surgery.
Back home in August, further testing revealed more than expected. Besides the carotid tumor, imaging showed a second, separate tumor — a paraganglioma — at the base of her skull. Paragangliomas are uncommon neuroendocrine tumors that can occur along cranial nerves and in other parts of the body.
Because the skull‑base lesion appeared slow‑growing, the team removed the carotid tumor first. That operation lasted about eight hours and Jayme recovered quickly enough to return to campus and graduate.
A difficult decision and a long operation
A follow‑up MRI showed the paraganglioma was beginning to affect blood flow to her brain, so surgeons recommended removing it before she moved to New York. Surgeons outlined two approaches: operate through the skull with substantial risks including stroke, or use a multi‑specialist approach through the mouth that would involve removing a tooth, breaking her jaw and temporarily opening part of her face. The transoral route carried different tradeoffs: it required a feeding tube and a tracheostomy and would likely damage the vagus nerve, leaving her unable to speak for a time, but surgeons felt it offered a safer route to remove the entire mass.
Jayme chose the multi‑team oral approach. What surgeons expected to take about 12 hours stretched into two days: the operation lasted 24 hours, but they were able to remove the tumor in full.
Recovery became a full‑time job
On waking after surgery Jayme could not talk, and she had a feeding tube and a tracheostomy. She needed help with daily tasks; even simple activities required a caregiver. Recovery took months. Her speaking ability was gone for roughly 10 months, and the feeding tube was later moved from her nose to a stomach tube while she healed.
Once her condition stabilized, an ENT who specialized in voice issues implanted a device in her right vocal cord and she began frequent speech therapy to relearn speaking, swallowing and eating. Jayme documented small changes during recovery — asking her parents to photograph her weekly so she could see progress in swelling and healing. Swallowing remains more difficult than before, but she ultimately regained enough function to pursue her goal of moving to New York and building a career in advertising.
Ongoing surveillance and a second opinion
Even after successful surgeries, Jayme continued annual monitoring for recurrence. Years later, during a telehealth follow‑up, she learned that one tumor had returned and a new lesion had appeared behind her ear. Her treating physician recommended radiation for the recurrence. As a 45‑year‑old single mother worried about the impact of radiation on her ability to care for her daughters, she sought a second opinion.
A second specialist she found through Healthgrades reviewed her records and advised against immediate radiation. He explained that the recurring tumor was growing extremely slowly — roughly one millimeter every two years — and that continued observation was reasonable. The new tumor behind her ear, he said, could be removed with a comparatively simple operation and a short recovery. Jayme had that procedure and recovered quickly.
Why advocating for your care matters
Jayme says her experience reinforced the importance of listening to your instincts and seeking additional medical opinions when something doesn’t feel right. A second opinion can confirm a plan, suggest less invasive approaches, or offer alternative timing for treatment — and asking for one is widely accepted and often welcomed by physicians.
Today
Jayme went on to build a career in advertising, became a mother of two daughters, and currently serves as Senior Director of National Accounts for the sales team at RVO Health, the parent company of Healthline. She hopes sharing her story encourages others to ask questions, slow down when big decisions arise, and seek another perspective when face to face with serious or uncertain diagnoses.
Disclosure: Jayme Cohen Lynde is an executive at RVO Health.