My name is Billie, I am from Australia and I was diagnosed with NF2 in 2014 at the age of 27. I started experiencing symptoms including hearing loss, pins and needles in my face and vertigo nine years prior to this, and was misdiagnosed with ear infections for the entirety of those nine years.
By chance, moving house and consulting with a new General Practitioner led to referral to an ENT, who organised an MRI of my brain, not expecting to find anything.
Two weeks later, I was sitting in his office as he told me that I needed to consult with a neurosurgeon ASAP as he was “not qualified to deal with this”.
One week later, I was consulting with one of my city’s top skull base neurosurgeons, who diagnosed me with NF2. My imaging showed bilateral vestibular schwannomas, bilateral trigeminal schwannomas, a third nerve schwannoma, a ninth nerve schwannoma, and 12 meningiomas.
I was scheduled for emergency surgery as one of my vestibular schwannomas measured approximately 3cm in diameter, and was underneath my largest tumour, a right-sided trigeminal schwannoma which measured 3cm x 4cm x 6cm. These two large tumours were compressing my brainstem significantly and causing symptoms including cardiac arrhythmia.
Since this surgery in 2014, I have also had a large peripheral tumour removed from my chest, and two large meningiomas removed at the end of 2018 after one had become severely necrotic. Even though meningiomas are usually benign, this necrotic tumour had transformed into a higher grade lesion. Now, I am faced with a choice of waiting for it to regrow and intervening with more surgery, or undergoing radiation therapy and hoping that this does not cause the rest of my surrounding meningiomas to grow more aggressively or become malignant lesions.
I have almost completely lost my hearing, and I have vision problems, especially in my right eye.
I am praying for a cure and so thankful for the work that organisations like NF2 BioSolutions undertake, if not for me, then for the patients diagnosed with this disease in the future. Thank you for all you do.