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Sep. 6, 2019

TOPIC: Uncategorized

Voices of Rare Cancer: Mackenzie’s Story

Posted by Valaree DonFrancesco

Singing has always been a big part of Mackenzie’s life. She auditioned for her school’s choir in seventh grade and continued singing throughout high school. But for a time, as Mackenzie weathered a rare cancer diagnosis, her voice faded, and it looked like she would never sing again.

It started during her junior year with a routine eye exam. An ophthalmologist told Mackenzie that her optic nerves were swollen. She had an MRI to investigate. The imaging revealed a mass at the base of her skull and upper neck, further investigation was required to provide a diagnosis.  

She then met with an otolaryngologist and neurosurgeon, who told her she had a paraganglioma — a rare benign tumor by the jugular vein at the base of her temporal bone. Of 1 million people, only about 3 to 8 are diagnosed with this type of tumor each year.  It’s slow-growing, and eventually begins to affect nerves and function in that region, causing problems with swallowing, voice, hearing loss, dizziness, facial paralysis and shoulder weakness. If left untreated, it has the potential to metastasize.

Unfortunately, surgically removing the tumor put MacKenzie’s swallowing and voice nerves at risk. The doctors believed there was little chance of saving her voice.  

After talking it over with her care team, Mackenzie decided to move forward with surgery despite the possibility she could lose her voice. It was a long, complicated operation that required a multidisciplinary team and intraoperative nerve monitoring to reduce the risk of facial weakness and shoulder muscle dysfunction, and to possibly preserve her voice.

When her surgery was complete, the paraganglioma was gone, but so was Mackenzie’s voice. “They removed all the tumor, but my vocal cord was paralyzed,” she recalls. “I couldn’t talk louder than a whisper.”

When a speech language pathologist told her the likelihood of being able to sing was low, Mackenzie was devastated. “I cried for two hours in a row,” she says.  And her voice wasn’t the only concern. Mackenzie’s palate inside her mouth, which normally closes during swallowing, also was weak. When she swallowed fluids, they would come out through her nose.

Doctors told Mackenzie that if the treatment didn’t provide long-lasting voice improvement, she had the option of undergoing a surgical procedure called laryngeal reinnervation. During the procedure, surgeons take a nerve from another area of the neck and attach it to the nerve that once produced movement of the paralyzed vocal cord.

Mackenzie waited to see how her recovery would go. But in spring 2016, her voice started dropping off. She would get hoarse more quickly, and she had vocal fatigue. Unable to sing well, Mackenzie decided to schedule the reinnervation procedure.

Mackenzie underwent the procedure in July 2016. Afterward, she continued to work on her voice with a speech language pathologist. Slowly, she saw progress. “It took about four months during my senior year of high school to get my full voice back,” Mackenzie says. “When that happened, I felt like I could take on the world.”  Mackenzie regained her ability to sing. Her voice came back so well, in fact, she earned a singing scholarship to attend Jones College in Ellisville, Mississippi, where she’s majoring in elementary education. Being able to continue to do something she’s so passionate about has meant the world to her.