25 April 2023
I got diagnosed in 2016 after going to the doctors. I noticed that the hearing in my left ear wasn’t as good as in the right ear, the doctor realised it wasn’t to do with wax build up so he sent me for a hearing test. The hearing test showed that I had lost more than half my hearing in my left ear.
I then got sent for an MRI scan, they found a benign tumour. After seeing ENT doctors, tests & stuff I got the diagnosis of NF2. I then had an appointment with genetic testing to establish the diagnosis again.
In 2017, I had my first surgery to have the first benign tumour (acoustic neuroma) removed, it was the size of a strawberry. After surgery, I lost complete hearing in my left ear. I now rely on wearing a hearing aid in my right ear.
I had another tumour on the right side but it’s been stable in size now for years and a few along my spine, they too are stable in size, except one that I had removed from the very top of my spine on 7th March this year.
I have a consultant based in Cardiff.