My name is Paul and this is my NF2 journey.
I was diagnosed at age 22, after three months of physio couldn’t fix a burning pain radiating down my left leg. I was sent to have my first ever MRI which showed a tumour consistent with a neurofibroma in my lumbar spine to be the cause of the pain.
This made me realise the lump in my right knee was likely to be a tumour too, which resulted in a second MRI to look at every region of my body. Beyond being a few draining hours in the machine, it also confirmed the presence of multiple spinal tumours, one on a nerve in my knee and tumours on my vestibular nerves. This was the first time I became aware of having bilateral acoustic neuromas or the potential for hearing loss.
I underwent genetic testing as NF2 can be hereditary, but the conclusion was that I am the result of a spontaneous mutation. No family history, but it does mean that I can pass the gene on.
Having tumours growing in small spaces in my spine that only nerves are meant to go through means unpredictable and debilitating pains.
I also have to really guard my right knee from any knocks as it is so exposed. As someone who likes to stay active, this can sometimes be a challenge.
My treatment is full of uncertainty. I have been in and out of multiple specialists’ offices over the years to discuss everything from surgery, radiation therapy and chemotherapy.
Every option was on the table, all the while being told to prepare for hearing loss in five to ten years, as well as a deterioration in my motor function.
The yearly MRIs are stressful, waiting to find out if there has been growth of my tumours and if the “what ifs” will eventuate. From 2012-2018 there was no change to any of my tumours, but that did not mean I was not constantly reminded of their presence.
I cannot sleep on my left side, cross my legs or have clothing bunch up behind my knee. I have tried a lot of different pain treatments, but none have really helped long term.
2019 was different. During one of my routine MRIs, doctors noticed the largest of my spinal tumours had grown significantly and in an inwards direction towards the spinal canal. I had noticed an increase in pain, but I put it down to circumstance and stress.
Being told I would need surgery was a huge shock following six years of stability. It was a realisation of the volatility of this disorder and that nothing can ever be taken for granted.
I’m now up for some pretty major surgery, but I can’t help but think that there are others who are more severely impacted. It makes me want to fight that much harder for those with hearing loss or for those who have already faced multiple surgeries at a young age.
I am determined to never allow my condition to stand in the way of what I want to achieve in life. From the mundane (sitting at my desk or waking up on my left side) to the extreme (landing a jump or rock climbing), I push beyond the discomfort because I refuse to allow my NF2 to be a barrier. I refuse to be held back from exploring the world and protecting the environment.
Things may change in the future, but I won't let that question mark become a full stop.