In Feb 2018, I was diagnosed with a 35mm brain tumour. I suffered a haemorrhage in April, and underwent major cranial surgery to remove the tumour in May. Surgery meant severing my hearing and balance nerve.
Whilst I have worked extremely hard to overcome the physical challenges of having half a balance system, I am still faced with permanent profound deafness on my left side. In noisy places my speech recognition is very poor, and I have no directionality of sound, and I now avoid going out to crowded, noisy places. I cannot begin to describe here, the difficulties you encounter when you lose the ability to hear on one side. To hear volume, depth and direction of sound, focus on a particular voice when you're in a noisy environment etc., you need two ears working together.
A CROS system will help me to hear some of the sound I am missing. Sadly, my local hospital has said that due to cost and budget they cannot offer me a wireless CROS hearing aid. In other areas, patients are being offered new, wireless models that help to distinguish certain sounds and reduce background noise, enabling them to go out and participate in social situations again without the worry and anxiety those of us with hearing loss often suffer from.
I hate that I'm having to ask at all, but I would appreciate any help at all to fund the purchase of one privately so I can get on with my life, start going out again and enjoy it rather than dread it, and move on from what has been a horrible, cruel, life changing event.
Going forward, I hope to work alongside charities, help them to fundraise, raise this issue with government officials and campaign for major change in the way Acoustic Neuroma sufferers are treated from diagnosis through to treatment and beyond, giving them the best chance of recovery.
To find out more, please watch My story