My Acoustic Neuroma Story
2022 was going to be an EPIC year for me and my product photography business…
So after two pandemic filled years I figured 2022 had to have better times in store for us! I made so many plans both personal and business - it was going to be an EPIC year! Little did I realise on 1st January 2022 that a global pandemic was soon going to look like a walk in the park!
Yes, 2022 had other things in store for me and my family.
How I was diagnosed with a brain tumour
I had been having chronic symptoms for a long time - fatigue and tiredness, clumsiness, multiple fractures down my left side - clumsy old Karen! I have had almost every test in the book to get to the bottom of it - blood tests (lots of them!), hormone, thyroid tests etc - and was always told I was normal and that as a mum with two young children I was obviously going to be tired. So I gave up trying to find out what it was and focussed on managing the symptoms best I could which helped for a long time - infrared saunas, intermittent fasting, cold showers, red light and eating good and nutritious food etc. But I knew deep down that there was something behind it all. I just didn’t know what.
And when I had some new weird and wonderful symptoms last summer such as vision disturbances, muscle twitches and facial numbness I once again went back to the doctor - fully expecting to be told everything was fine once again.
My doctor quickly referred me to a neurologist to rule out Multiple Sclerosis (MS) based on my symptoms. Thankfully I was seen and assessed very quickly at the St George’s neurology department (like within 24 hours which is slightly incredible)!
At my neuro assessment they weren’t massively worried - I passed the neurological tests with flying colours. But they arranged an MRI on my head and spine just to be on the safe side. Because the doctors didn’t seem worried I figured it was all in my head (lol!), and had a 40 minute MRI (horrific) and then got on with life.
But when I got the phone call from the hospital a few weeks later asking to see me a mere hour later I knew they had obviously found something and prepared myself for an MS diagnosis. As my appointment coincided with school pickup time I arranged for Andy to pick up the boys from school and I headed to the appointment on my own.
On the 21st February 2022 at 5.15pm I was diagnosed, not with MS, but with a vestibular schwannoma (also known as an acoustic neuroma). I had never heard of it either! I also have another bonus benign tumour on my spine because I do like to over deliver, which I just had a CT Scan on and am awaiting the results!
What my diagnosis means
The schwannoma is a rare tumour sitting on my vestibular (balance nerve) and is 2cm by 1.5cm so about the size of a large grape. I am that 1 in 100,000 people who has this kind of tumour - lucky me!! Often the first real symptom is hearing loss in the affected ear, but for me it was single sided tinnitus. So all my bumps, breaks and falls wasn’t me just being clumsy - my body was working crazy hard keeping me upright which is why I have been so blooming knackered for the last decade! And it has been growing for a very long time (possibly up to 15 or so years based on its size).
Thankfully it is benign - something I am very, very grateful for. The singer, Tom Parker, died of a different kind of (malignant) brain tumour mere weeks after I was diagnosed and it really knocked me for six - it became real that I did indeed have a brain tumour. But as brain tumours go this is the one you want - benign, easily accessible and treatable. I’ll take that.
As the tumour is benign and slow growing, and surgery has massive life implications (single sided deafness, vertigo and balance issues, and temporary or permanent facial palsy being the main ones), they have decided to wait and watch for a little bit to see what happens. So I’ll have to have an MRI every six months from now on - if it is growing then they will look at either radiotherapy to shrink it, brain surgery to remove it or a combination of both.
So what happens next…
My next MRI is on 27th June. So I am kind of in limbo right now - carrying on as normal knowing I have an invader in my head, crazy tiredness and all the emotion that goes with my diagnosis and not knowing what will happen come June. Will I be on another 6 month wait or will events overtake? My life has suddenly been broken up into 6 month chunks for the foreseeable future and could change at any time. And gosh is the waiting hard - for me and my family. I am not typically a wait and watch kind of person - I like to deal with things and get the worst out of the way. But I’d like to keep my hearing for as long as possible, so this time I must wait. And trust that I am in the best possible hands.
Am I terrified? Yes.
Are there days when the fear comes and I curl up in a ball and ask why me? Yes.
Are there days where I feel like I could sleep for a week and hope it all goes away? Yes.
Does it feel incredibly lonely and isolating at times. Yes.
Do I worry about how I will cope with single sided deafness if and when the time comes. Yes.
Am I worried that possible facial palsy means I will never smile properly again. Yes.
Does it devastate me that my limitations mean I can’t give them the childhood they deserve? Yes.
Benign doesn’t always mean harmless…
So despite the tiredness, my slightly wonky balance and the possibility of single sided deafness and facial palsy, I still count myself incredibly lucky – brain tumours kill more children and adults under the age of 40 than any other cancer (and mine isn’t cancer!)… But it is unlikely to kill me although it may cause some loss to my quality of life in the longer term.
But I’ll never let it stop me or hold me back - I’ll always be a glass half full kind of gal who believes that tomorrow is a new day with new opportunities and we always have to make the most of the hand we are dealt. And there is no point in wallowing in self pity or what might have been. You have to make the most of EVERY. SINGLE. DAY!
And should surgery be needed, my lovely consultant is one of a small number experienced enough to do this kind of operation in the UK… And not only does he perform brain and ear surgery - he has won multiple gold medals in the Commonwealth Games representing the UK in his spare time. It’s that kind of over-achiever you want tinkering about in your head if needed! McDreamy eat your heart out!
And so I’ll keep working away until my next MRI at the end of June - helping small businesses stand out and sell more online. Because I love it. And its so much better to focus on something good and positive than fester and think about ‘what if’?
But I will be pacing myself and working around my symptoms. The boys stop school for the summer in early July and for once I plan on taking the whole summer off to be with them and do really lovely things the whole time instead of fitting them in around work. If one good thing has come out of this is that I am finally saying no sometimes instead of always yes. And I am putting myself and my family first - because after years of hating my body and its limitations, I am beyond grateful and how hard it has worked for me - fighting to keep me upright and making adjustments to keep my living my life. So I am going to give it a break finally and be kind to myself. I’ll have my EPIC year another time. Now is a time for compassion and kindness.
I very nearly kept this news to close friends and family only. But as Jack reminded me recently - I am always telling him that his voice has power and the ability to do good for others and so that mine does too. So the reason I am posting this is to raise awareness - both of brain tumours and of single sided deafness - a club I may soon be part of. Crazily, just 1% of the national spend on cancer research has been allocated to this devastating disease. So I am going to try and raise as much awareness and money to support these charities as I can in the coming months - stay tuned!
So this is my story so far. Thank you for reading. xx