I thought that I should start by sharing with you what lead me to my diagnosis. Although it was only a mere 6 months ago the whirl wind that has occurred since November makes it appear like a lifetime.
I attended the "live set with Kasey Chambers" at the Iwaki Auditorium in September 2014 and loved every minute of it. I am so grateful that I sat for two hours listening to what was some of Kaseys best music. On the days following the concert I noticed that my tinnitus (ringing in the ears) had worsened. It came to a point where I decided to seek medical advise. After numerous appointments, an MRI discovered bilateral acoustic neuromas (a tumour growing on both the left and right auditory nerve). I was really scared when I found out about the condition. The thought "why me" ran through my head. I was scared of the unknown and was doing far too much reading on the internet......you can't always believe "Dr Google,". I had always put my hearing loss and tinnitus down to the effects of chemotherapy that I had as a teenager, it turns out that God had another challenge in store for me.
After seeing the specialist in mid January a second MRI revealed a large tumour on my spine. Two weeks later i underwent surgery at The Royal Melbourne Hospital to have the neurofibroma removed from my spine at L4. One of the things that sticks out in my mind about the initial days following surgery is my brother calling me "a hero". At the time I felt anything but a hero. I was in a lot of pain, could barely move and at times I wondered how the hell I was ever going to get through this. I am pleased to say that it's now four months on and I am finally kicking goals. Although I still suffer a lot with nerve pain, especially in my right leg, which gets me down at times, I have made a lot of gains. With my stubborn nature and the wonderful support from my family, friends and work colleagues , I pushed myself through rehab, am back at work full time and finally have some normality in my life.
The biggest challenge I face living with NF2 is the loss of hearing. The presence of the tumours has left me with 80% hearing in my left ear and only 20% in my right. I am highly sensitive to noise so struggle in most social situations. 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 tumours will leave me deaf. It is my hope that I learn to communicate through sign language before this happens.
Being diagnosed with NF2 hasn't been all doom and gloom. In fact I think that it has made me a stronger person with a more positive outlook on life. Don't get me wrong I have my down days and it can be really tough. I read a quote recently that sums it up nicely..."Don't forget your human. It's okay to have a meltdown, just don't unpack and live there. Cry it out and then refocus on where you are headed" (author unknown). I am grateful that it has allowed me to reconnect with my cousin who also has NF2. I owe a lot of my strength to Renee who has been my guiding light. Up until now she has been the only person I could talk to and know that she knows first hand what the struggles feel like. Sadly my brother has also been diagnosed with the condition. Along with NF2, Mark struggles with rheumatoid arthritis but he still manages to smile and see the positive in every situation.....he is now my hero.
The reality of my life is 6-12monthly MRIs to monitor the acoustic neuromas. Whilst one of them is already growing dangerously close to my brain stem, it is not impeding it in any way. While this is still the case I am going to enjoy a life of sound. I vow that I will live life to the fullest and spread awareness.
I take pride in telling people that I owe my good fortune to Kasey Chambers.