In September 2014 I attended the “live set with Kasey Chambers” at the Iwaki Auditorium. On the days following the concert I noticed the tinnitus that I usually experienced had worsened. After a month of no change I decided to seek medical advise. After numerous appointments with an ENT, an MRI discovered bilateral acoustic neuromas.
Acoustic Neuromas, otherwise known as vestibular schwannomas are benign tumours that occur on the nerve for balance leading to the inner ear. Before my diagnosi of Neurofibromatosis type 2 (NF) I was oblivious to the strong family history of the condition for we had lost contact with my dads side of the family after he passed away. I had always put my loss of hearing and tinnitus down to the chemotherapy I had when I was a teenager.
After obtaining the results of the MRI, I was referred onto Associate Professor Robert Briggs and Professor Andrew Kaye both who have extensive experience of treating patients who have NF. Mr Briggs sent me for both a hearing and balance test. With these results as well as the results from the MRI it was decided immediate treatment was not necessary, instead a watch and wait approach was adopted with 6 monthly MRIs. My immediate relief was short lived after a MRI of the spine discovered a tumour that needed at be removed as soon as possible. Two weeks later, Feb 3rd 2015, I was admitted to the Royal Melbourne Hospital where the Tumour at L4 was removed by Professor Kaye. 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 be given for a long time to come. The left acoustic neuroma has 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 and there are increased risks. Professor Kaye explained the surgery would be a translab craniotomy (behind the ear). The surgery would leave me deaf in that ear and there may be a possibility they would have 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 Mr Briggs wouldnt consider an 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 they both decided it was safe for me to still go.
On the 30th November I underwent a 9 1/2hr operation to remove the acoustic neuroma. I was lucky I didn’t experience the “sea sickness” like symptoms immediate 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 and 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. Although the recent surgery has left me deaf in my left ear, I have found that the clarity of noise I hear is so much better now that I don’t have to contend with the murmurs I was hearing in my left ear.
I am highly sensitive to noise which is difficult considering most people assume because you have a hearing impairment they need to shout at you to be heard. I struggle in most social situations to follow what is being said if there is a lot of background noises or the room is full of hard surfaces. This can be terribly isolating at times.
I come home from work every day mentally exhausted particularly if I had to attend a meeting or had spent a great deal of time on the phone.
I more often than not get people’s name wrong or misunderstand a conversation for I tend to not hear the whole word and have to guess what was said.
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 AN will leave me deaf. 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 developed a bucket list of things I would like to tick off, an opportunity to take in as much sound as I can before it’s too late. Since June 2015 I have ticked off items such as listening to the roar of the crowd at a football match, bagpipes, live theatre, an orchestra, the last post, listening to Kasey Chambers live (I am now up to concert number 4!)
Before my diagnosis I had never heard of the condition, now I know only too well what it’s like living with NF that is why I am passionate about raising awareness and funds in the hope that one day a cure may be found.
You can follow Kylie’s NF2 journey here: http://www.kyliewebb.com/