My name is Millie, and this is my story of life with NF2.
I was diagnosed with NF2 at age 13 after experiencing a number of severe migraine headaches which left me on the couch for hours. I had a couple of MRIs on my brain to see where these headaches were coming from, which revealed vestibular schwannomas on both hearing nerves, as well as multiple smaller tumours spread out down my spine.
It was quite a daunting diagnosis, particularly when dealing with all of the other normal changes that come with starting high school. I went from being an active kid who played as many sports as possible to one whose future was a lot less certain.
Before my family and I knew it, we were on a scary and unpredictable journey; meeting many different specialists; surgeons, doctors, geneticists, counsellors and audiologists, mostly at Westmead. We travelled from Coffs Harbour to Sydney regularly.
I underwent genetic testing which concluded that my condition was the result of a spontaneous mutation.
After living with NF2 for a year, we started learning and talking about the chemotherapy medicine called Avastin. I was lucky enough to start infusions thanks to Dr McCowage in March 2015 which we hoped would slow the growth of my tumours.
I received the infusion through a port a cath every two weeks for five years with very few side effects. While being on Avastin I had MRI check-ups every six months. It gradually slowed down the growth of my tumours by reducing my tumours blood supply.
I had my first surgery in June 2020 to remove a vestibular schwannoma on my right hearing nerve, as my brain stem was getting quite compressed and distorted despite the medication to slow the growth.
I was told by my main surgeon’s Dr Dexter and Prof Da Cruz to expect to completely lose my hearing in my right ear and have possible facial paralysis. This thought was quite daunting for a young woman who has always been very smiley, but luckily that was not a worry as I had awesome surgeons looking after me.
I was told by Prof Da Cruz at Westmead I would be a candidate for getting an Auditory Brainstem Implant (ABI).
I was told this would be the second ABI implantation ever done in Australia. The ABI would help restore some hearing, despite the expectation that I would experience complete hearing loss as a result of eventually removing both acoustic neuromas.
The surgery was completed at the same time as the removal and recovery was going smoothly; however, it took a sudden turn for the worse a few weeks later. I started getting headaches and bad neck pain up near where the brain connects to the spine which left me almost immobile on the couch.
After battling through this horrific pain for a number of weeks, my symptoms suddenly worsened. I became violently sick one day and my temperature spiked to 39° degrees. Mum took me to the emergency room where I was diagnosed Meningitis. I spent the night in hospital before being flown by Air Ambulance to Westmead where my surgeons could look after me more carefully.
One of the most mentally and physically challenging experiences of my life was being stuck in hospital more than 500km away from everyone I knew, amidst a worldwide pandemic for 10 days.
I have never been so thankful for family, friends and the technology that helped me get through those ten days.
Sadly, after my battle with Meningitis, my hearing took a turn for the worse leaving me completely deaf for around six weeks. It was so hard for me to communicate during this time.
I taught myself to lip read quite well over that period, but my Auslan is still a work in progress. They ended up turning my ABI on earlier than expected with the help of Dr Brew and her team at the Sydney Cochlear Implant Centre; that helped me a lot.
My hearing has come back significantly since starting back on Avastin in March 2021.
I have gradually got use to the tinnitus buzzing sounds which happens in some annoying situations.
I have come to live with the fact that I’m going to be deaf in the future after having a second surgery on my other vestibular schwannoma. As well as struggling to communicate to my family and friends with my hearing on bad days. I have decided it’s the best for me to learn AUSLAN earlier on while I still have some degree of hearing. In 2022 I spend two nights a week for about 10 months completing my Certificate 2 in Auslan at my local TAFE campus. I had the best experience and meet so many nice people while I was there.
I enjoyed learning AUSLAN so much in 2022. I’m looking forward to completing my Cert 3 in AUSLAN in 2023.
Now being 22 years old meaning I have known about my NF2 diagnosis for nearly 10 years which has made me realised what a great team of doctors/surgeons I have taken the best care of me. I have had Avastin Chemotherapy infusions off and on since March 2015, so it feels routine for me nowadays.
I have tried not to let this crazy NF2 journey stop me from doing the things I love and dream about; from playing sport, going to the gym, or earning my own money.
I am a quiet but determined person and I like to think I have met every challenge that has so far been thrown at me, I cannot say it has been easy but I’m luckier than some and I try to look ahead to the future with hope that one day someone out there will find a cure for NF2.
I want to help bring NF out of the shadows because it effects people in so many ways and changes their way of living. People should not be treated differently because of NF as it is worldwide.