'The tumors will never stop... I just want my face back': Woman, 32, born with ... trends now
A woman born with an ultra rare condition that causes grapefruit-sized tumors has revealed her latest health fears after having multiple surgeries.
Leanna Scaglione, 32, first discovered she had Neurofibromatosis Type 2-related Schwannomatosis when she was a teenager after doctors discovered a massive tumor in her lower spine.
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, which left her wheelchair-bound for about a year. Since then, she has undergone six other procedures to remove tumors throughout her body.
Recently, she had a golf ball-sized tumor removed on her right auditory nerve which left her completely deaf in one ear and gave her temporary facial paralysis.
Leanna Scaglione, 32, was diagnosed with Neurofibromatosis Type 2-related Schwannomatosis at 16. She has temporary facial paralysis after she had a golf ball-sized tumor 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 injury when she was a teenager, doctors diagnosed her
Though her facial nerve was not damaged, her doctor said that the 16-year-old tumor that sat next to it all that time 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.'
Prior to her diagnosis, Scaglione was an aspiring ballerina who suffered a dance-related hip injury at the age of 16.
An MRI soon revealed her rare condition that left her 'unable to walk and stand.'
'I was not able to stand upright on my leg with full pressure for more than like, five seconds,' she said.
After about a year, she was able to gain normal mobility again as she 'slowly but surely' continued to 'live out' her life and learned to walk again.
While she got a taste of normalcy for a bit, doctors soon discovered two more tumors inside 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'll come back the same way that my leg was able to come back,' she said.
During her tumor removal surgery on her ear, Scaglione had an auditory brainstem implant installed.
An auditory brainstem implant is a device that bypasses the cochlea and auditory nerve to deliver a sensation of sound for 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 that I learned to accept 16 years ago when the tumors were first discovered,' she said.
