Dialog Box

Children's Tumour Foundation of Australia

Kylie's Story

I was diagnosed with NF2 in November 2014, after attending a Kasey Chambers concert. The persistent tinnitus led me to seek medical advice and it was then that the bilateral acoustic neuromas (now known as vestibular schwannomas) were discovered on a MRI.

On Feb 3rd, 2015 I underwent my first surgery associated with NF at the Royal Melbourne Hospital to remove a tumour from my spine. I will never forget the feeling of relief of waking up after the surgery and being able to wiggle my toes. Although I now live with constant nerve pain down my right leg, I will forever be grateful for my ability to walk.  

In July 2016, after a routine MRI, I was delivered news that I had thought I would not have to face for some time. The left acoustic neuroma had grown 3mm in 7 months. Whilst that doesn't sound like a lot, 3mm in 12 months is classed as a large growth, mine had done that in half the time.

Professor Kaye talked me through both surgery and radiation. He admitted that he was not a fan of radiation as the likelihood of controlling the growth of the tumour in a NF2 patient is substantially less than in a patient that doesn't have NF2. There were likely to be increased risks.

Kylie Webb | NF2 | Children's Tumour Foundation of AustraliaProfessor Kaye explained the surgery would be a translab craniotomy (behind the ear). The surgery would leave me deaf in that ear, with the possibility that they would need to leave some of the tumour behind to preserve the facial nerve function. Radiation may be necessary in this case to prevent further growth.

I was disappointed that my ENT Surgeon wouldn’t consider an auditory brainstem implant (ABI) at this stage due to the level of hearing I had on the right side.

I was due to go on my first overseas trip to America in September. I was relieved when both my specialists decided it was safe for me to still go.

On the 30th of November 2016, I underwent a 9 1/2hr operation to remove the left acoustic neuroma.

I was lucky I didn't experience the "seasickness" like symptoms immediately post-op that most patients do; however, the recovery from this surgery hasn't been an easy road.

The facial paralysis on the left-hand side of my face made simple tasks like eating and drinking difficult. My eye was unable to close and was sensitive to light and wind. It required regular drops and had to be taped shut at night. I underestimated the fatigue I would feel after the operation. For the first couple of months post-surgery my concentration levels were very low.

It has taken persistence with facial exercises and time, but luckily my face has improved dramatically. I no longer have the lopsided smile that greeted me in the mirror post-op except for when I am really tired.

The biggest challenge I face living with NF2 is the loss of hearing. After watching a television program about children who were losing their sight and what they wanted to see before this occurred, I began thinking of my own wish list.

What did I want to hear before my world became silent?

The biggest challenge I face living with NF2 is the loss of hearing. After watching a television program about children who were losing their sight and what they wanted to see before this occurred, I began thinking of my own wish list.

My list was vast - from the roar of the crowd at the MCG, the pipe organ at the Cathedral in Bendigo, the bagpipes to the sound of the waves at the beach.  I made it my mission to tick off each and every item.  Not only did I want to hear the sound, I wanted to be able to commit the sound to memory and remember how that sound made me feel."

The greatest thing to come from this (other than hearing the sounds) was the opportunity to do the podcast "A bucket list of sounds" for Earshot ABC.  The producer, Sam Loy, was with me as I ticked off the final items on my list and developed an amazing podcast that highlights the implications of being hearing impaired and of having NF2.

During my last consultation with the ENT it was recommended I consider a drug therapy called Avastin.  The purpose of Avastin is to block the blood supply that feeds the tumour and stop the tumour from growing so it would delay the need for further invasive surgeries and allow me to retain what hearing I have for as long as possible.  

Whilst Avastin is currently available in Australia on the PBS for other conditions, it is used ad hoc for NF2 based on the funding through the hospital where the treatment is being offered, either through compassionate access or self-funded.  

The Royal Melbourne Hospital advised me that they would not fund the treatment. I attempted to seek support from local and national MPs, but my emails did not result in any change to this decision.  I applied for the early release of my super to fund the treatment.  

I am aware of several people who have received funding from other states. This inequity is something I will not give up on.  I am now halfway through the treatment, which I have found to be a big commitment  ̶  driving into the city every fortnight, juggling full-time work all whilst feeling fatigued.  

What inspires me to keep going is the belief it is all worth it.  I have become extremely intolerant to loud noises all of a sudden (more so than usual), I tend to understand people better even when they are wearing a mask but the best was when I answered someone who was speaking from behind me.  Although I have decided to not have an MRI halfway through to check the progress I am thankful for these little signs that it may be working.

Kylie Webb - Avastin treatment | Children's Tumour Foundation of Australia

The idea of living in a silent world scares me but sadly one day that will more than likely be my reality as removal of the remaining vestibular schwannoma will leave me deaf. 
I am currently learning sign language as a means to communicate.  I try and live life to the fullest and not dwell on the hand I have been dealt with although this isn't always easy.  I am thankful for the person NF has shaped me to be  ̶  resilient, confident, and a fighter!