My story began in late January 2018 when I approached my GP after having tinnitus and difficulty hearing for an unknown length of time. I was referred to an Audiologist and in April 2018, we found that I have profound hearing loss affecting the right side. I was in complete shock that at 27 years old I was nearly deaf on one side. The Audiologist was great to try and calm me however she stressed that it wasn’t normal in my age group so I would be getting referred for an MRI. We then talked Hearing Aids, and I will honestly say that at first my vanity was holding me back, embarrassed of something that publicly displayed my hearing loss. After seeing and holding one the feeling dissipated some bit and I asked to be put on the waiting list knowing that it would give me time to come to terms with it. Telling my fiancé Brian, and family was difficult as I was still in shock, thinking of all the possible reasons this could have happened. 

The MRI came in late May and then on the 6th of June 2018 I received a phone call with the results,  I was told I had a growth on one of the nerves near my inner ear. My world stood still. How could this be? I was in such shock. The day was a blur from there and I was so thankful to have Brian by my side while we told all of our loved ones. Having just finished my postgraduate in radiotherapy oncology the year before, I had good clinical knowledge of what an Acoustic Neuroma (also known as a Vestibular Schwannoma) is however my clinical experience as a student never prepared me for what getting a diagnosis is actually like for both the patient and their loved ones. 

When most people hear “benign”, the following words are usually “Well that’s OK then”. However this is not the case, having a low grade (benign) tumour in the brain causes a multitude of problems and in severe cases can be fatal. The main symptoms of an Acoustic Neuroma are Hearing Loss, Tinnitus, Fatigue, Vertigo, Migraines, Balance Issues, and compression on the facial nerve can cause facial numbness and sometimes weakness in the facial muscles. Continued growth can cause compression on the brainstem which is life threatening. 

There are 3 options when diagnosed with an Acoustic Neuroma, Watch and Wait, Radiotherapy or Surgery. For the first 18 months after diagnosis, I was on watch and wait which uses hearing tests and MRIs to monitor changes. After my AN started growing again, our course of action has lead us to a surgical approach, which had to be delayed due to Covid-19. This has gone to my benefit as I have been using my time proactively to boost my physical and mental wellbeing.

I am doing a September Slog with a goal to reach 75km of outdoor walking before my I go into self isolation before surgery on September 29th. During the month of September and thereafter I hope to continue bringing more awareness to Acoustic Neuromas so that those with symptoms whether mild to severe, get checked without delay. I also hope to show that wearing hear aids isn’t as bad as my first fears were as they greatly lessened the tinnitus and have had an improvement on my social life. 

Update - My goal of 75km will be reached on my final day before isolation! 2 rest days and 12 days of walking and hiking in Edinburgh!