Our individual post brain surgery journey is not only about our physical recovery but also regaining our mental balance, wellbeing, and self-confidence – as well as adjusting to our new normal daily.
“In November 2017, I was diagnosed with an Acoustic Neuroma +25mm pressing on the left-hand side of my brainstem, which I named “Brian in my brain”. On reflection, before my diagnosis I knew something was not right, with loss of hearing on my left hand side, ad hoc shooting pain behind my left ear, headaches, fatigue, and tinnitus.
AN journey starts ….
My immediate reaction to discovering I had a brain tumour, for which due to its size and location (pressing on my brainstem) surgery was my only option, was denial and anger, as I had recovered from surgery and radiation treatment for thyroid cancer only ten years previously.
Hearing the consultant’s verdict, seeing the 3D scan image of ‘Brian’ my benign brain tumour (for the record ‘Benign is not Fine’) and being told about the surgery involved to remove it and the possible complications was terrifying. With so many unknowns, it made me incredibly anxious.
Initially I retreated into myself as found it difficult to come to terms with what I was dealing with and the implications for myself and my family. However, my experience of dealing with my thyroid cancer a decade previously, gave me the armour to set out on my AN journey. Glass half full, Carpe Diem mental attitude and a whole lot of hope and faith.
Finding my balance again…
In early March 2018, following a 10 hour operation at Addenbrookes Hospital in Cambridge, ‘Brian’ my Acoustic Neuroma tumour was 100% successfully removed from the left hand side of my brain under the expertise of the skull base medical team.
Miraculously, they managed to unwrap my facial nerve from around ‘Brian’ and minimised the facial palsy on the left hand side of my face. My physiotherapy sessions went so well that I only spent three nights in hospital; the ENT and physiotherapist reckoned that due to doing balance related sports and exercises, my vestibular balance had already adjusted over the last decade, when they believed Brian had been growing quietly in my brain.
However, my recovery journey had truly begun. It came to an abrupt halt when, 10 days after discharge, I suspected I had a CSF (Cerebrospinal Fluid) leak. Following a check-up and emergency CT scan it was confirmed by my neurosurgeon, and I was readmitted into Addenbrookes Skull Base ward on 26th March and put on a lumber drain for ten days.
There is only a 5% risk of developing this post-surgery and it was at this point I hit an all-time low with the return of the facial palsy, as well as feeling afflicted and alone on this journey, as I also developed meningitis as well.
I couldn’t even cry properly, as my left eye duct was still not fully operational. My turning point was when a teenage girl, who had a rare genetic brain tumour growth condition, came on the ward. Chatting to her mum I found out she had already had a number of brain tumour operations and that she was having an AN removed which meant she would be 100% deaf post op. This was a wake up call to stop feeling sorry for myself and to start putting a positive spin on matters, I still had Single Sided Hearing (SSH) and a full recovery to my new normal life ahead of me.
It was not an easy recovery road post op and adjusting and coming to terms with Single Sided Deafness (SSD) on my left hand side, as well as coming to terms with my new normal life has been challenging. I hit a mental and psychological brick wall around seven months post-surgery, when the enormity of what I had been through dawned on me.
I struggled to find the help to see me through this dark period, but I am naturally a positive person and thankfully I got through this. Before my AN I was very sociable, but now I am selective about what I do. I wear a cros-aid hearing aid, however, this is not ideal, as if I’m in an environment with a lot of ‘white noise’ I struggle to zone in on a conversation and suffer from fatigue post being in places like this.
I have tried not to let my AN define me, and thankfully the support of family and friends, as well as faith, hope and determination have helped me along on my journey.
Post recovery, because family and friends only see the tip of the iceberg, they think you look and are fine, however they do not see what you are dealing with underneath on a dailybasis: hearing issues, facial weakness, tinnitus, cognitive issues, eye issues, balance issues, sensitivity to sound, fatigue, anxiety, low self-confidence and more …
On reflection as hard as my journey has been it has taught me being given a second chance (or third chance in my case) at life, to value each day and the importance of making a difference. My health journey has taught me the importance of connection and community with a tribe of people who understand you to provide support. Formed by Sara Crosland The Beyond Recovery Project has created this special community and she has been truly positively inspiring for me on my recovery journey. At my local forest I conduct walks monthly with other brain tumour survivors, which provides a natural healing environment.
Valentine’s weekend saw the first Sahara Trek team training in Wales, where we climbed to the summit of Moel Siabod in challenging icy and poor visibility conditions.
An incredible, inspiring team are heading to Morocco to trek 100km across the dunes of the Sahara desert creating footsteps in the dunes to raise awareness and funds for the ‘Beyond Recovery Project CIC’. This will be a once in a lifetime experience and it will be a huge test of my physical endurance and mental resilience.
Every step I take will help fund life-changing projects for those who need it most.
By Amanda Connor
You can donate to Amanda’s fundraiser here.
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The Beyond Recovery Project CIC 