A woman born with an ultra-rare disease that causes tumors the size of a grapefruit has revealed her latest health fears after undergoing multiple surgeries.
Leanna Scaglione, 32, first discovered she had schwannomatosis related to neurofibromatosis type 2 as a teenager after doctors discovered a massive tumor in the lower part of her spine.
This rare disease, also known as NF2-SWN, causes noncancerous tumors to grow throughout the nervous system.
Scaglione, an executive personal assistant in New York, had the tumor removed from her spine, leaving her in a wheelchair for about a year. Since then, she has undergone six more 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 temporary facial paralysis.
Leanna Scaglione, 32, was diagnosed with schwannomatosis related to neurofibromatosis type 2 when she was 16 years old. She has temporary facial paralysis after having a golf ball-sized tumor removed from her right ear in January.
This rare disease, also known as NF2-SWN, causes noncancerous tumors to grow throughout the nervous system. During an MRI for a dancer’s injury when she was a teenager, doctors diagnosed her
Although his facial nerve was not damaged, his doctor said the 16-year-old tumor that remained next to him all that time left the nerve “traumatized.”
“Some days I feel good, but most of the time I feel self-conscious,” Scaglione said. “I just want my face back.”
Before her diagnosis, Scaglione was an aspiring dancer who suffered a dance-related hip injury at the age of 16.
An MRI scan soon revealed her rare condition which left her “unable to walk and stand”.
“I couldn’t stay upright on my leg with all the pressure for more than five seconds,” she said.
After about a year, he was able to regain his normal mobility as he “slowly but surely” continued to “live” his life and learned to walk again.
While he tasted normal for a while, doctors soon discovered two more tumors inside each of his ears.
The one growing in his right ear doubled in size every six months and affected his hearing and balance.
“I have to get over it and hope it comes back the same way my leg was able to come back,” he said.
During surgery to remove the tumor in his ear, Scaglione had an auditory brainstem implant installed.
An auditory brainstem implant is a device that bypasses the cochlea and auditory nerve to provide a sensation of sound to people with extreme hearing loss.
After his procedure in January, Scaglione no longer had a cochlear nerve to attach a cochlear implant to, so he had to receive an auditory brainstem implant.
“It was something I learned to accept 16 years ago, when the tumors were first discovered,” he said.
During surgery to remove the tumor in his ear, Scaglione had an auditory brainstem implant installed. Although she does not understand or hear language through the implant, she hears a humming sound that helps her point out specific things.
Despite his setbacks, Scaglione decided to run the United Airlines NYC Half Marathon in March and in doing so raised money and awareness for his condition.
“Any sadness I felt about going deaf had been resolved years ago…I was prepared for this outcome.”
Their implant was placed behind the ear and descends to the brain stem with electrodes.
Although he does not understand or hear language through the implant, he hears a buzzing sound that helps him point out specific things.
‘It’s just incredible that I can hear anything because everything is completely deaf there. Deaf as a bat,” she said.
What Scaglione was not prepared for was temporary facial paralysis, which has severely affected her self-esteem.
Although his facial nerve was not damaged, his doctor said the 16-year-old tumor that remained next to him all that time left the nerve “traumatized.”
“Some days I feel fine, but most of the time I feel self-conscious,” she said.
“Even when I make my videos for social media, I’m like, ‘Are people just watching because they’re disgusted by this monster, or do they really care?'”
She is expected to have to deal with her recurring tumors for the rest of her life and will possibly become completely deaf in the future.
With one of the tumors located on his left auditory nerve, Scaglione hopes that once the mass is removed, he won’t “have to deal with facial paralysis again.”
Despite his setbacks, Scaglione decided to run the United Airlines NYC Half Marathon in March, and while doing so, he raised money and awareness for his condition.
As he ran, he said The New York Post that he experienced “some small ‘screaming daisy’ moments,” but they did not prevent him from reaching the finish line.
“I think I’m very proud to be able to prove to myself that I’m capable of doing all this.”
He is currently participating in three trials of chemotherapy drugs to help shrink tumors growing on his auditory nerve.
Scaglione also has tumors growing in his spine and leg that are currently “stable,” although he 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 is very satisfying to keep going and cross the finish line. It’s a tangible achievement that says, ‘You can do this. You did it,'” Scaglione said.
He is currently participating in three trials of chemotherapy drugs to help shrink tumors growing on his auditory nerve.
Scaglione also has tumors growing in his spine and leg that are currently “stable,” although he 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 proposed to continue running until he “physically can’t.”
“Things change too often and there are too many variables that we can’t control,” he said.
“I’ve always been a little stubborn and competitive, and I guess the NF gave me a lifetime of competition that made me determined to win,” she added.
Scaglione plans to participate in the six major marathons in Boston, New York, Tokyo, London, Berlin and Chicago, in hopes of winning the Six Star Medal.
“Now I have my heart set on it too,” he told the New York Post.