In 2007 at the age of 16, I picked up the phone one day and couldn’t hear the person on the other end very well. I had the phone up on my left ear and upon switching it to my right ear, I could hear fine. I thought that was a little odd and decided to go to an Audiologist to get it checked out. They couldn’t find anything wrong from the exterior, so they sent me to have an MRI which revealed a ~30mm benign, acoustic neuroma near my brain stem that was the cause of my hearing loss.
Amongst that was another 4-5 other smaller brain tumours that were not a cause of concern. I had surgery to remove the tumour which has left me without feeling in the left side of my face due to the severance of a facial nerve. I was in hospital for about 3-4 weeks, had to learn how to walk again and after being discharged, had a few more months of recovery at home before I was back to normal.
I went through the discovery of the tumour, surgery and post-surgery all whilst I was in the last few years of high school whilst studying for my final exams which was understandably quite stressful.
My school was extremely supportive from regular 1:1s with various teachers, my principal (who was also the school priest) offering lots of counselling and guidance, to academic help and special exemptions in assessments.
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My school let me skip whatever classes I needed (which I didn’t abuse nearly as much as I should’ve!) and they organised get-togethers with all of my friends out of school at McDonalds which would be the highlight of any teenager’s school life! I had all the support possible from my school and it helped me get through this tricky time.
At the time, NF2 wasn’t mentioned but since this first surgery, I’ve had yearly MRIs to monitor about 9 tumours of varying sizes in my brain and neck.
Fast forward to 2021 - I was contacted by a geneticist at Monash Genetics (whose origin for reaching out to me I don’t quite remember). From there, I did a genetic test to look for the NF2 gene. The test was inconclusive but the geneticist concluded that it is very likely to be NF2.
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Around this time I noticed I had had a sore lower back for many years (~4 years) that I chalked up to working in IT and having bad posture. After spending lots of money on expensive work chairs and tables, a new bed and chiropractors, it still wasn’t improving. The pain kept worsening and it reached a peak when I got COVID-19 in 2022 and every time I sneezed I got a big electrical jolt throughout my body. Thinking that wasn’t right, I went to have an MRI in my lower back, where a small ~10mm benign tumour was found in my spinal cord in the L3/L4 region.
In 2023 I had surgery to remove that tumour. I was in hospital for about 2 weeks, and recovery at home took about 2 months alongside physio to help me get back into shape.
And soon I will have another brain operation to remove a tumour that is slowly showing symptoms.
Knowing that NF is something I have to live with for the rest of my life and cannot escape from can be very draining mentally and physically.
After each surgery I wake up from, I don’t feel that sense of accomplishment and clarity because I know that this won’t be my last surgery or hospitalisation. I will have to have scans in the future, more tumours will come up impacting me in different ways, and I have to go through the surgery again. It’s that realisation that can impact you mentally because NF will always be in the back of your mind (figuratively - and sometimes even literally) and you will have to revolve your life around it.
Given that it’s also a relatively unknown disease makes it difficult to tell people about your story and what you go through. I never say I have NF, but instead I just say I have brain tumours and people understand that. What they don’t understand is how I constantly grow them and why I keep having surgeries.
After my most recent surgery in 2023, I was on the lookout for communities related to brain tumours and NF2 across Facebook, Reddit and other social media. I then somehow came across CTF.
I wasn’t quite certain if CTF applied to me as I wasn’t a child and was hesitant in joining thinking I wouldn’t get much help from it. I signed up to the mailing list anyway and to my surprise, only a few months later saw that there was an NF2 Zoom Meeting. That meeting helped me in so many ways to just hear other people’s stories and experiences with the same condition. Since Day 1 when I was going through my brain tumours and my eventual NF2 diagnosis, I felt it was something very rare and I had no one to really connect to. I could tell my story to others but it wasn’t quite the same as connecting with other NF2 sufferers on the call.
In some ways, NF has been somewhat of a blessing in disguise because it makes you look at life in a different perspective. It grounds you to understand what’s important in life. Much like any life threatening illness, it makes you see past things that others might put greater importance to and make you appreciate the smaller, more personal aspects of life.
If it wasn’t for me back in 2007 getting something rather innocuous like reduced hearing checked out, or in 2023 when I got an MRI for my lower back pain, I would certainly not be here writing this today.
For anyone reading this, if you notice anything strange in your body - whether it’s a small lump anywhere, you have an ache somewhere, your hearing or vision seems a bit weaker, get it checked out. Whatever it is, go to your GP or a few specialists to find out what it is and don’t stop until it gets better or you find out what it is.
This message I especially emphasise to men. We can sometimes fall victim to the ‘it’ll get better’ mentality or just think a small thing isn’t enough to ask someone for help. But there’s nothing ‘weak’ or being dramatic about getting help and it could mean the world of difference for your life. In the best case, it could just be a visit to the GP who says it’s a small ache that will subside but in the worst case it could lead your life into a totally new different direction.