I was 35 years old, newly married, had a four-year-old daughter and a mortgage when my doctor told me that I had a 5cm growth in my spine.
It was a Monday afternoon and I’d rushed straight from work to make the appointment. My GP got to the point very quickly. She told me that the results of my third MRI showed a lesion in my spinal canal that was putting severe pressure on my nerves.
After the initial shock wore off and I left her office, paper referral to a neurosurgeon in hand, I felt relief, which initially surprised me. But I was relieved – I finally had an answer for the months of debilitating pain I'd been experiencing.
The struggle had been mental as well as physical. Those months had given me an intimate perspective on life with chronic pain and it was a daily test of my willpower and resilience to keep going.
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During these months I was scared to stop, even for a day. I was scared to take a day off work. Scared to stop and feel the pain as it was too much to handle so much of the day. I was scared that one morning I wouldn’t be able to get out of bed at all; scared my daughter would see me like that.
As it was, she saw me dozens of times cringing in pain and deep breathing like I was in labour again. She was always so kind and sympathetic, coming to comfort me. But it hurt even more that she had to see me like that, her being so young.
My pain had started randomly as acute pain in my left glute and hip before progressing to sciatica nerve pain. I couldn’t sit down or lay down without being in excruciating agony. I stood up all day long at work and at home, until I couldn’t stand anymore. Come the evening, I would collapse onto the couch with three strategically placed heat packs along my back, glute and upper leg.
I dreaded getting up as I would have a surge of intense nerve pain every time – honestly, it was worse than childbirth (and I had a natural labour without pain relief!).
In the months before my diagnosis, I’d seen the doctor, chiropractor, physiotherapist, acupuncturist and my sports massage therapist multiple times and never found any relief. I had scripts for oxycodone, tapentadol, tramadol and other painkillers, but they didn’t even take the edge off.
My first MRI on my left hip showed nothing.
It wasn’t until I had a second MRI on my lumbar spine that the medical team started to get a true picture of what was going on – and it was the third MRI, which was done on my spine using a contrast dye, that showed the tumour and surrounding nerves in more detail (although I didn’t know that at the time).
After being in pain for nearly three months, I finally had the answer. The technical term for my tumour is a myxopapillary ependymoma. My neurosurgeon told me that it had likely been growing in my body for the past 10-15 years, slowly putting more and more pressure on my nerves as it grew.
I'd had no idea the whole time – and once I had my specialist referral, it was less than three weeks before I had surgery.
I am forever grateful for my neurosurgeon. He was friendly and professional and put my mind at ease from the first time I met him. My surgery was scheduled for a Friday afternoon, and considering the seriousness of the procedure, it took less than two hours. The surgeon told me that once they had drilled through a section of bone in my vertebrae, sliced a small incision into my spinal cord and clamped the blood supply to the tumour, the growth practically popped out.
I spent four nights in hospital. The first 36 hours post surgery were the worst. I was hooked up to IV pain relief, a catheter and felt completely stuck to the hospital bed. My husband and daughter came to visit me the next day and my little girl was very uneasy about all the cords that were hooked up to me (not surprising, she was four!). But seeing them meant the world to me.
I was wheeled out of the hospital on the fifth day and spent the next three weeks slowly recuperating at home. Whilst physically I was doing really well, I was mentally exhausted from the months of pain, so I used those weeks to process my experience and allow my body and energy to restore (Netflix in bed was the best medicine).
I'm now nearly a year on from my surgery and no one would know what I’ve been through unless they saw the scar on my back. Life has gone back to normal and the only side effect of my tumour is some numbness in the tip of my right big toe and my left butt cheek – both things I can live with.
I know it might sound cliche, but my perspective and outlook on life has completely changed. What if I had received a life-threatening diagnosis instead that day? I know I am one of the fortunate ones.
I thank my body every day for being able to move with ease, I celebrate the big and the small things in life every chance I get, and our calendar is full of family trips away to make more memories, including a month travelling in Thailand next year.
This experience was definitely a wake-up call to start living and appreciating life even more.
Karen Windsor is a mid 30s chick from Perth. She’s got her hands full juggling the chaos of motherhood, navigating a FIFO (fly in fly out) marriage and standing out in her roles as a personal assistant and public relations pro. Embracing life with a sense of humour, she's defying the stigma often associated with her namesake.
Featured Image: Supplied