Anne O'Donnell's story

One Friday night in February 2011 I woke in the middle of the night with an earache. I visited my local out of hours service who told me I had an ear infection and prescribed antibiotics. I do remember, even at this stage, covering my eyes as the slightest ray of light was causing immense pain.

I went to bed on Saturday afternoon and by Monday I still hadn't moved from bed, and I was getting worse. My husband took me to our GP who spotted meningitis immediately. I was very lucky as I was treated in a specialist ward very quickly. A lumbar puncture confirmed what everyone suspected, meningitis which had come from the infected ear.

After three weeks, and a host of scans checking for long term effects on my brain, I went home to my wonderful husband and children, with only a little damage to my ear, no real long term effects.

What's scary is if I hadn't had someone in the house with me, I would have stayed in bed and I'd never have survived. It creeps up on you, and it is so debilitating so quickly.

Reading on the MRF site the literature on how I may feel after the experience, and reading the experiences of others, has been a huge relief and comfort. It is emotionally difficult to come back from this, I'm OK physically, but still scared stiff it should happen again.

Anee O'Donnell
January 2012

Fast forward to November 2018, I was attending a routine check up with the ear surgeon that looks after my damaged ear. She found a mass inside my ear and she had no idea what it was. I was referred to a specialist in ear and lower skull surgeries. 

So it's been an eventful 10 months. I had surgery in September 2019 where they removed a cyst of brain fluid from my ear, removed my brain from my ear canal and built up a barrier using a graft of stomach fat. What they found in my ear, which was damage from the meningitis in 2011, they had never seen before, as such, the surgery and the outcome are pretty experimental. However, all agreed that something had to be done as i was a walking risk of further meningitis. The ironic thing was, the surgery itself brought a high risk of meningitis as does any surgery involving the brain. 

I have been impacted by the surgery, major loss of hearing being the most prominent at the moment, but I'm still in recovery. 

Meningitis stays with sufferers not only physically, but emotionally. When you look better and go back to work and laugh and joke with family and friends, for me, it was still always there, the fear it would come back and cause more damage. So finding out the infection had rotted my skull and over 7 years slowly created a cranial crack which meant I might go through it all again was heart breaking for myself and my family.  If you or a loved one has suffered, be aware and patient with respect to the long term impact. It never leaves you. 

October 2019