Portrait: Robbie
Having suffered with anxiety most of my life, and particularly badly for the past couple of years, the diagnosis of my aneurysm in October 2023 hit me hard. I was already in a bad place with my mental health.
Where Robbie’s story starts
Firstly, I must confess that I'm not a ‘typical’ brain injury survivor. Or a carer of one. Or family/friend of one. Actually, I don't even personally know any brain injury survivors. So I feel a bit like a fraud writing this. But someone said it might do me good to put my story down into words.
I had what I generally think of as a ticking time bomb in my head: an aneurysm deemed big enough and misshapen enough that I required surgery.
Of course, that meant I was luckier than most, that I got the 'bomb-disposal' in, to attempt to defuse my 'time bomb'.
Struggling with my mental health
Having suffered with anxiety most of my life, and particularly badly for the past couple of years, the diagnosis of my aneurysm in October 2023 hit me hard. I was already in a bad place with my mental health. I had little knowledge of aneurysms, and my online aneurysm research led to a whirlwind of medical explanations about causes, diagnosis, medical options, etc.
It all became overwhelming for me, and I felt the ‘volume’ in my anxious head was getting more profound, so much so that I began to think (in fact I truly wished) I didn’t know about it, so then I could have lived each day more controllably. At the time, I REALLY couldn't appreciate how lucky I actually was to have this knowledge.
Finding hope, solidarity, and community
On 30th December 2023, I saw the New Year Honors List with Emilia and Jenny awarded MBEs for raising awareness about brain injuries through their charity. This was my first introduction to SameYou and, although I didn't know it at the time, it was to become a very welcome place.
The website became a trusted 'friend' for me to go to and find out more about brain injury on a personal level.
Reading the personal stories, reading the struggles and battles and bravery and heartache these people have gone through, has helped me get back into perspective that I AM the lucky one, and also the very personal information they were brave to share which became a much more personal education on my journey.
Shifting my perspective from denial and fear to gratitude and acceptance
So, through a quite random brain scan that most people don’t have the fortune to have, I was given the opportunity to solve my aneurysm before it became life threatening. The overwhelming 'banging’ anxiety in my head became something I was content with, as I was given an opportunity most people don’t get. I got to decide where and when (well as much as you can with the NHS) and even what method of operation to have (endovascular coiling).
I was given a date of 20th August 2024, and yes, I was scared, and overanxious, but much more clued up, more prepared if things didn’t go to plan, and supremely appreciative of the invisible hand that SameYou held out to quietly support and guide me. I felt much more ready for my operation.
Undergoing life-changing surgery
My procedure went exactly as scheduled at 9am on 20th August 2024, and four hours later, I woke up in the recovery room. Then, another three hours later, I was on the ward feeling surprisingly ok – considering what I had just gone through. Although later that afternoon/evening I did encounter some issues with one of the catheters, and I had consistently low blood pressure that required me to be hooked up for hourly blood pressure checks and then put on a drip for 24 hours. But, the nursing staff worked expeditiously that evening and night, and even though they were probably overworked on an already overstretched ward, their care was unfaltering. And by 6pm the following day, I was leaving the hospital to go home.
All my online research pre-op' had suggested endovascular surgery through the groin, yet my neurosurgeon had said his preferred option for endovascular surgery was through the wrist with the thought that I would get mobile again fairly quickly, which I found to be quite an inspired choice and has been a very positive experience.
Two days after returning home I was taking a somewhat careful walk outside, and by the following day I was starting to get my confidence back in walking. For me personally, walking has been a hugely important part of my recovery both physically and mentally, and I am thankful for the neurosurgeon’s foresight.
And when I consider how both my wrists (surgery procedure in one and anesthetic in other) were very weak and very bruised for some weeks after surgery, I can only assume I wouldn't have gotten walking again quite so quickly if operated via the groin.
Reflecting on my journey
So, that's me, my experience hasn't exactly been extraordinary or life changing, but to those of you who have experienced life changing brain injury, either as a survivor or a carer of one, I can only admire you all.
Thanks to my family and friends for their support before and after, and of course SameYou for just being there and allowing me to write about my experience.
And last, but not least, special thanks to the neurosurgical team and anesthetists and those I didn’t consciously meet, and definitely not forgetting the nursing staff post-care. All extraordinary!
My story isn't of bravery and survival, but more of an appreciation to SameYou and those who share their stories - I can't thank them enough for their bravery to help and highlight something so worthy. They don't realise how much they have helped me get this far.