I was having spasmodic major headaches, slurred speech, severe balance, vision, spatial and mobility issues. Many friends had started pointing out my symptoms, insisting I seek medical attention. Something was wrong. I also had a major issue while flying home from interstate. I was frozen in a sitting position on flight landing and had to be taken off the plane in a wheelchair.
The GP incorrectly diagnosed Parkinson's disease ... he prescribed Parkinson's meds, which I declined to take until a diagnosis was confirmed.
I was referred to see a Neurologist with no urgency and waited many months for an appointment. The Neuro also felt it was Parkinson's insisting I commence meds. I refused again, so an MRI was organised for 3 weeks later.
A large 8cm x 6cm x4cm mass with significant midline brain shift was discovered.
Wham Bang, I was admitted immediately to Gosford Hospital. I was then transferred to North Shore Hospital overnight and on the operating table at North Shore Private the following morning. Meeting my Neurosurgeon on the way to the operating theatre.
After lengthy, slightly difficult surgery, visitors in ICU stated, “It’s you Di, you are back”. All symptoms had subsided immediately. My cognition was spot on, in fact when OT came to do a mini mental cognition test 3 days after surgery, I told her to turn papers over and sit back, and I ran her through the test. Clever gal eh! I was retired but had used this Universal Cognition Test for many years assessing patients for Dementia and knew it like the back of my hand. My Wonderful Neurosurgeon was extremely impressed as were his colleagues who had just come to meet me.
Histopathology results:Large Fibroblastic Meningioma with possible cortical brain tissue attached. Grade 1. Benign.
I spent 2 weeks post-op in North Shore Private Hospital and then transferred back near home for a further 2 weeks in the Neuro Rehab Unit to get me back on my feet and continued as an outpatient a further 5-6 weeks. I spent many months mobilising with a rollator walking frame, then a walking stick. My only deficit still after 5 years is balance/vertigo, but much better than it was. I was 2 weeks shy of my 69th Birthday when all this occurred. Heading towards my 73rd soon.
I had 55 migraines documented in my first-year post-op with massive vertigo and 5 hospital admissions. Finally, a different Neuro intervened and it was discovered I was having TIAs (mini-strokes) which turned out NOT to be associated in any way with my Meningioma history. My left carotid artery was seriously occluded. All fixed now with horrendous, wide-awake, worst surgery ever, and ongoing meds. Hopefully, my story gives hope to those entering this journey, cause this Old Gal is here, loud and proud, and pushing for research & information sharing.
After my discharge, I was curious about these types of brain tumours. I searched online and discovered a newly formed Australian Meningioma support group, which I now manage. Then I discovered BTAA and became involved. I am now on the leadership team of BTAA Sydney Support Group as well as being honoured to become a Committee Member of BTAA. Both groups provide valuable peer support, carer & patient support, research information, and insight.
Managing the Meningioma site has really opened my eyes to the many major and debilitating issues arising for patients with so-called “Benign” tumours.
I am definitely one of the Very Rare Lucky ones to have come through basically unscathed. I never had to think about it or live with it on Wait & Watch. It all just happened overnight and I landed in the hands of my Brilliant NS. His care has been above and beyond all expectations. It took more than 12 months for my brain to re-expand into normal position and fill the void created by the removal of the BAT ... i.e. Big Arsed Tumour ... on our support site we tend to give our Meningiomas names. I am fit, well, active and living the dream life.
I now have a very valid excuse for having “NO FILTERS” sometimes when I speak.