I had been having worsening issues with the hearing in my right ear, including tinnitus, hearing loss and sound sensitivity (hyperacusis) over a number of years, with many health professionals telling me it was a just recurring ear infection; little did I know how wrong they were.
It’s July 2020, and following a sudden and dramatic drop in my hearing on the right side I’m at Warrington Hospital speaking to an ENT specialist who is giving me the option of a hearing aid following a hearing test.
I told him that I was ok with that, but that something just didn’t seem right, there was a fullness feeling deep in my right ear and it felt really odd. He suggested an MRI scan to see if that showed anything.
“The next few weeks were difficult…”
A week later I had an MRI scan, and on the 5th August 2020 the results came in. The ENT consultant called me… “Mr Turnross, I’m sorry I have to tell you, but you have a rare brain tumour – it’s called an Acoustic Neuroma.” The next few weeks were difficult emotionally and psychologically “why me?” and speculation on my future.
This type of tumour is extremely rare, it’s not genetic, typically grows on your vestibular (balance) nerve but is closely associated with the cochlear (acoustic) nerve, it is slow growing and also benign.
I was put on a ‘watch and wait’ period to monitor any changes, but after 6 months I was told by my ENT consultant at Aintree University Hospital that I would have to have treatment as the tumour was now starting to compress my brain stem.
On 4th March 2021, at Clatterbridge hospital in Liverpool, I underwent a gamma knife radiosurgery procedure to control the growth of the tumour. The procedure was successful in that it has currently controlled the growth; the procedure did however cause some collateral damage to some of the surrounding treated area, which unfortunately did result in other nerve related issues.
“Every day is precious”
My mindset has now shifted from feeling sorry for myself; every day is precious, and we all can take our health for granted, which is never guaranteed. My journey to acceptance of my condition and dealing with the associated symptoms has been hard, not least with single sided hearing loss which for so many can be very depressing and isolating. I feel truly blessed with having some incredibly amazing family and friends around me who take time to listen, empathise and support when things are not going so well.
Created by Sara Crosland, The Beyond Recovery Project has been truly inspiring for me and such a positive impact on my overall well-being. It has built a strong and special community where I can regularly attend (and sometimes conduct) walks in a natural and relaxing environment with other brain tumour survivors. We share our stories knowing we each have the ability to totally “get-it”, and to provide true empathy and support which is always so incredibly uplifting and empowering.
In February, the Sahara Trek team met collectively for the first time on a fitness training weekend in Wales where we trekked to the (snowy covered) top of Moel Siabod followed by sand dune training in Anglesey the next day! I couldn’t have met a more inspiring group of warm and supportive people, with whom I am looking forward to sharing so much time with this year.
Carl Turnross
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