Hi, I’m Renee
I have been battling an illness for two and a half years. In that time I have had 16 treatments and five brain surgeries.
At 23 years old I was diagnosed with a cyst in the deepest part of my brain. From that day on, and throughout the next two years, I went through 16 treatments, five brain surgeries (including one open brain), I’ve had to re-learn how to walk, twice, and I’ve lost and then regained my eyesight and left side movement. Over the time of my treatment I’ve been bed bound, put in isolation and pricked and prodded from my head to my toes. Going into my fifth operation I refused medical treatments and medications and reverted to the natural side of things. I ditched the conventional for the natural and this is my experience with that change. This is my #TrueStoryBro.
“We found something”
It started with three simple words “we found something”. These are words you would never expect, nor want to hear after a CT scan. You’re probably thinking this is the part where I dropped to my knees in tears? But I didn’t. I simply packed a bag and headed to the hospital where an MRI confirmed that I had a cystic tumour located in the deepest part of my brain.
Four months ten treatments later and I headed in for my first brain operation.
This surgery was least invasive (although I didn’t know that at the time) and involved an ICP monitor (Intracranial Pressure Monitor) inserted into my skull to see if I had any pressure or a blockage in my head. It was hard to grasp how serious this was at the time (it still is now). My family worked hard to make humour and light of the situation, sending photos of themselves with charging chords stuck to their heads; I am so glad to have had the support of my family at this time, they really got me through. We were giventhe all clear with no pressure building in my brain, although this then resulted in my case being deemed “non-urgent” and I was told that they would only operate if hydrocephalus was showing (if they could see cerebrospinal fluid accumulating in the brain).
The severity of the pain forced me to be hospitalised almost weekly and after two or three months the doctors finally decided it was time for my second brain surgery. That, or they were just getting sick of me...
Doctors believed that the pain was presenting as a symptom of the presence of the cyst, so the aim for my second surgery was to drain the cyst to relieve some of the pressure, and hopefully the pain. Unfortunately, the surgery was cut short as they had a few issues with the camera not holding sight. However, they did confirm that my cyst had shred itself (I still haven’t asked for much detail about exactly what this means) and caused a blockage above my third ventricle which they had cleared hoping it would relieve the pressure and pain I had been suffering and restore a bit of vision.
Sadly, it didn’t…. What up round three!?!
Call me crazy (I know I did) but I was all smiles walking in to the hospital that day knowing they were going in for a third attempt at ridding my brain of this alien. But, just as suddenly, reality hit and I cried for the first time in this whole ordeal. I cried because there were bigger risks involved - I may lose movement in both my eyes - I cried because I had to make a choice, it was either continue living with this horrid pain or risk not seeing the beauty this world holds and watching my nephews grow - cliché, but so true.
I’ve never been one to back down from a ‘what if” so it all went ahead, and thankfully the third surgery was deemed a success.
All so foreign to me, I was now experiencing life without pain – no words can describe that moment.
Having given up study and work for over a year I finally felt like my life was finally getting back on track. I was regaining the strength to excel in my passion, planning future travels and most importantly feeling like I am back to my old happy, driven self. But my happiness soon fell short…
I left work one day feeling a little unstable, heading home to try to sleep it off. I woke up with stabbing pains in my head, vomiting and feverish, which led me back into hospital hooked up to a drip and oxygen. Later that night I had trouble breathing and blacked out in the nurse’s arms. I regained consciousness to eight doctors discussing whether I had experienced a seizure which later got ruled out – thankfully! In classic Renee fashion I gave them the thumbs up and exclaimed, “I’m good team” which unfortunately didn’t get me out of being bed bound and put in isolation for the next three days.
The following morning my surgeon scooped me out of bed, placed me in a wheelchair and took me to his office to show me my recent MRI scans…
Six months on and with my fourth surgery coming up I figured it was about time I would let people know that I wasn’t just turning down a night out to ‘catch up on some sleep’ or skipping a boxing session because I ‘couldn’t be bothered’, I was fighting an illness, an illness that I had been hiding from the world.
The plan for the fourth surgery was to drain the cyst then cut it in half. The procedure itself would take six hours but sadly it was, again, cut short, this time due to a brain haemorrhage and the surgeons being unsuccessful in stabilizing my heart rate. After an emergency CT scan and the surgeon explaining the seriousness of what had happened all I remember was being high as a kite and saying “ok, you have a lovely day” whilst flicking my wrist to send him on his way - how embarrassing. I was then forced to lay in 40 degree angle for 48 hours which, as you can imagine, is not the most comfortable position and resulting in my body seizing up and a lot of silent tears.
All I wanted was a shower. Showers are worth their weight in gold, you know? It’s the small things that matter the most sometimes. But a shower, well that required help as my legs were not playing ball. Coming into my fourth surgery the left side of my body decided to shut down restricting arm and leg movement making things as simple as having a shower independently a shared experience (sorry mum). Nonetheless I was set that I wasn’t going another hour without a shower. I called on my therapist to assist me as we shared a few laughs whilst I stared at my left leg in confusion wondering why it wasn’t “just moving” - a simple task we take for granted. Regardless, I got to have my shower but unfortunately that one step forward sent me ten steps back.
I had a post op infection.
This was the worst pain I had ever felt to this day. I questioned my strength, my will power and my life. I wondered if I would ever be able to go through this again and, in that moment, I prayed and hoped with every last tear that this was the last one, that the suffering had ended and that when I opened my eyes I would have made it through to the other side. The other side where my life would begin. Which I did… for an amazing seven months.
No more medications, no more treatments.
This time I was the one in charge of my life, no more treatments, no more needles and no more medication - I declined it all. I didn’t want to stop living so I continued my travel plans, living through my pain, not living around it and not letting it stop me. I was no longer embarrassed of my condition, but proud of what I’ve achieved.
At this time I chose to revert to the natural side of things. I took natural health supplements for sleep and liver detox, used essential oils for sleep and anxiety, plant protein and greens to help with nutrition plus nootropics for brain support. Alongside this I made a change to my diet and lifestyle. I tried fasting, Keto, and even yoga and mediation to calm my mind.
The change that this all made to my living condition was incredible!
At this time my work family unfortunately had to watch me deteriorate as the months ticked over. I wanted to work as it gave me a sense of normality and the team gave me the perfect amount of support to get me through the tough days – absolute legends! Eight months on and the call to my boss was made. I was done. My body had given up, it had deteriorated to the point of darkness. Closed curtains, horrendous pain and bed ridden was my life leading into surgery.
Surgery number five was always going to be inevitable. This time open brain, 12 hours with life threating risks. But I didn’t hesitate once, I planned for the worst and even had that “uncomfortable” talk with my family in what I wanted if mortality happened, but I always hoped for the best - and I made sure I did it with a smile.
This moment had finally arrived and I wasn’t nervous, I was ready. I was seeing past the fear and looking at how bright my life will be. I went in with a smile and came out with a smile and even cracked a few dad jokes. They were all so impressed of how well it went!
The surgery was a huge success
After the surgery my surgeon told me that they were in shock at how well I was doing as most people don’t get out of bed for three months. I was out in two days. I wish you could have seen the look on their faces, it was utter shock.
That day I had to learn to walk again and, again in classic Renee fashion, I limped out with only freedom in site.Trying to walk again was my biggest challenge post-surgery, I first handily felt what it was like to not have the use of my legs, so I walked every day and started hill climbing five days after.
I did it.
I put a lot of my recovery success down to my lifestyle changes that I started pre surgery number five. After everythingmedicine and if you find this isn’t working for you I would highly recommend the natural approach, or at very least to supplement your treatment.
All in all, I am doing really well. While I’m still battling fatigue every now and then, that’s nothing compared to what I went through. I would do this all again to come out the person I am today and how I view the world and my life.
I will be followed for the next two years as doctors cannot confirm or deny that it will regrow, but I am consistently hopeful and will continue to get the most out of my life, the natural way.