A woman born with an extremely rare condition that causes tumors the size of a grapefruit has revealed her latest health fears after multiple surgeries.
Leanna Scaglione, 32, first discovered she had neurofibromatosis type 2-related Schwannomatosis when she was a teenager after doctors discovered a huge tumor in her lower back.
The rare condition, also known as NF2-SWN, causes non-cancerous tumors to grow along the nervous system.
Scaglione, an executive personal assistant from New York, had the tumor on her spine removed, leaving her in a wheelchair for about a year. Since then, she has undergone six other procedures to remove tumors throughout her body.
She recently had a golf ball-sized tumor removed from her right auditory nerve, leaving her completely deaf in one ear and causing her temporary facial paralysis.
Leanna Scaglione, 32, was diagnosed with Neurofibromatosis Type 2-related Schwannomatosis at the age of 16. She has temporary facial paralysis after a golf ball-sized tumor was removed from her right ear in January.
The rare condition, also known as NF2-SWN, causes non-cancerous tumors to grow along the nervous system. During an MRI for a dancer’s injury when she was a teenager, doctors diagnosed her
Although her facial nerve was not damaged, her doctor said the 16-year-old tumor that had been next to it all along left the nerve “traumatized.”
“Some days I’m fine with it, but most of the time I feel self-conscious,” Scaglione said. “I just want my face back.”
Before her diagnosis, Scaglione was an aspiring ballerina who suffered a dance-related hip injury at age 16.
An MRI soon revealed her rare condition that left her “unable to walk or stand.”
“I couldn’t stand up straight on my leg with full pressure for more than five seconds,” she said.
After about a year she was able to move normally again, while she ‘slowly but surely’ continued to ‘live’ her life and learn to walk again.
While she briefly tasted normality, doctors soon discovered two more tumors in each of her ears.
The one growing in her right ear doubled in size every six months and impaired her hearing and balance.
“I have to work through it and hopefully it will come back the same way my leg was able to come back,” she said.
During her ear tumor removal surgery, Scaglione had an auditory brainstem implant installed.
An auditory brainstem implant is a device that bypasses the cochlea and auditory nerve to provide sound sensation to people with extreme hearing loss.
After her procedure in January, Scaglione no longer had a cochlear nerve to attach a cochlear implant to, so she had to get an auditory brainstem implant instead.
“It was something I learned to accept 16 years ago when the tumors were first discovered,” she said.
During her ear tumor removal surgery, Scaglione had an auditory brainstem implant installed. Although she does not understand or hear the language through the implant, she hears buzzing that allows her to signal specific things
Despite her setbacks, Scaglione decided to run the United Airlines NYC Half Marathon in March, raising money and awareness for her condition.
“Any sadness I felt about my deafness had been dealt with years ago… I was ready for this outcome.”
Her implant was placed behind her ear and goes to her brain stem with electrodes.
Although she does not understand or hear the language through the implant, she hears buzzing that allows her to signal specific things.
‘It’s just unbelievable that I can hear anything at all because it’s completely deaf there. Deaf as a doornail,” she said.
What Scaglione was not prepared for was temporary facial paralysis, which seriously affected her self-esteem.
Although her facial nerve was not damaged, her doctor said the 16-year-old tumor that had been next to it all along left the nerve “traumatized.”
“Some days I’m fine with it, but most of the time I feel self-conscious,” she said.
‘Even when I make my videos for social media, I think to myself, “Are people just watching because they’re put off by this freak or do they actually care?”
She is expected to have to deal with her recurring tumors for the rest of her life and may become completely deaf in the future.
Now that one of the tumors is on her left auditory nerve, Scaglione hopes that once the mass is removed, she “won’t have to deal with the facial paralysis anymore.”
Despite her setbacks, Scaglione decided to run the United Airlines NYC Half Marathon in March to raise money and awareness for her condition.
As she ran, she talked The New York Post that she experienced “a few little ‘whoopsy daisies’ moments,” but they didn’t stop her from reaching the finish line.
“I think what I’m most proud of is just being able to prove to myself that I can do all this.”
She is currently participating in three trials of chemotherapy drugs to help shrink the tumors growing on her auditory nerve
Scaglione also has tumors in her spine and leg that are currently “stable,” although she said that could change. “It’s the unfortunate part of NF. There is no set path or plan that can be followed to help treat it’
‘It’s so satisfying to persevere and cross the finish line. It’s a tangible achievement that says, ‘You can do this. You did it.'” Scaglione said.
She is currently participating in three trials of chemotherapy drugs to help shrink the tumors growing on her auditory nerve.
Scaglione also has tumors in her spine and leg that are currently “stable,” although she said that could change.
“It’s the unfortunate part of NF. There is no set path or plan that can be followed to help treat it.”
Scaglione has made it her mission to keep running until she “physically can’t anymore.”
“Things change too often and there are too many variables out of our control,” she said.
“I’ve always been a bit stubborn and competitive, and I guess NF has given me a lifelong competition that has made me determined to win,” she added.
Scaglione plans to compete in the six major marathons in Boston, New York City, Tokyo, London, Berlin and Chicago in hopes of earning the Six Star Medal.
“I now have my sights set on that,” she told The New York Post.