A Patient’s Journey: Recurrent Respiratory Papillomatosis

December 2, 2016

HeadLine
December 2, 2016

Best

When patient Morgan Toll came to Johns Hopkins with severe breathing difficulties and scarring of her vocal chords, Simon Best first performed an emergency tracheotomy and devised a long-term surgical treatment plan that has restored her voice and ability to breathe.

The first time Otolaryngologist head and neck surgeon Simon Best met Morgan Toll was relatively unremarkable. The 25-year-old was visiting Best’s clinic for simple follow-up after surgery from another provider for complications of recurrent respiratory papillomatosis (RRP), a disease that causes benign tumors called papillomas to grow inside the airway and the condition that Best has focused on for his entire career.

However, the second time that the two met would prove to be one of the most dramatic patient encounters of Best’s career. Toll returned with severe breathing difficulties and scarring of her vocal cords, with an airway measuring only 3 millimeters. It was the narrowest he had ever seen in a patient who didn’t already have a tracheostomy, or a breathing hole, in the neck.

“She came to my clinic saying that her breathing had gotten worse, and it was unbelievable. There was hardly any space in her airway at all,” Best remembers. “It was so severe that the only thing to do that day was an emergency tracheotomy.”

Rushed to surgery, the procedure would start Toll on a two-year surgical journey with Best that would give her back her ability to breathe and her voice.

Toll was diagnosed with RRP at only 8 months old. By the time she was 11, the trained theater actress had endured more than 200 surgeries. These procedures were necessary not only to remove the papillomas that constantly grew, but also to remove scar tissue that became a byproduct of so many surgeries.

In remission for more than a decade, Toll’s disease began to resurface when she was 22. Eventually, her voice barely rose above a whisper, and simple physical tasks—such as climbing a small flight of stairs or even walking across a room—became extreme challenges.

After her emergency tracheotomy, Toll and Best formulated a plan to improve her health and her voice. He’s now performed a series of seven surgeries, each one removing a little more scar tissue using special techniques to reduce regrowth. Part of the novelty of her case is that her vocal cords had to be removed due to overabundance of scar tissue there, but Best has been able to return her voice by injecting a filler into other parts of her larynx, thickening the tissue there to act as a new set of vocal cords. Eventually her airway was widened to the point that the tracheotomy was able to be removed—the culmination of a long journey.

Being able to breathe—a gift that she’ll never take for granted, Toll says—and speak has allowed her to start pursuing acting work, a vocation that runs in her family. (Toll’s sister is Olivia Holt, an actress who has starred in several Disney Channel shows and movies.)

“I’m now looking to start my life again,” she says.

Although Toll’s treatments are far from over—the nature of RRP means that new papillomas will continue to arise—Best says he’s incredibly encouraged by her success so far.

“It’s a long endeavor,” he says, “but it’s extremely gratifying that we can make progress step by step, and at the end, we can give her a new lease on life.”

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