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Barry P's story

6th November 2018

Following routine cochlear implant surgery, Barry became ill not once, but twice with bacterial meningitis. He tells us his story

Barry's story

“On 15 September 2015, I had corrective cochlear implant surgery on my left ear.

"This was to replace a failed tissue graft surrounding the electrode, which was to try and prevent infections. But I had been warned that one of the risks of surgery was contracting meningitis. I'd had nine surgeries on my left ear for various things by that point, and I was fully versed on what the risks were.

“But you never think it's going to happen to you, do you?

“My recovery from that surgery was very strange to say the least. The first two days after surgery, I think the best way of describing it was that I was as high as a kite, and initially, no pain from the surgery. On the third day, I was in pain - but it was a manageable pain. On the fourth day, there was a little bit of bleeding from the ear canal. This is quite normal, and the pain had gone again.

“On Sunday 20 September 2015, I woke up in the morning feeling very tired and sluggish and I went back to bed for a nap. I don't know what time it was by this point, but I woke up with what I can only describe as being a crushing headache.

Call the doctor

“I started vomiting more or less immediately, and continued throwing up. My sister was in the house at that time and asked if I was OK. I said that I had a little bit of a headache, but that I would be alright. I went back to bed to lay down, but then got up again, went to my sister, and said, "I think you’d better call the doctor. It's only five days since that op".

“As I understand it, my sister called the out of hours doctor (it was a Sunday afternoon or evening) and was told to call an ambulance immediately. I would say that at this point, I started drifting in and out. Certainly when I think about it, I wasn't fully aware of what was going on around me at that time.

“First response paramedic came out, followed by an ambulance. I do remember him asking me what happened, and he said that he would give me something for the vomiting. I also remember walking out to the ambulance, but my condition deteriorated on the way to the Royal Victoria Hospital in Belfast, and I was taken in to the Emergency Department by trolley.

“I'm told that I had become very agitated, and tried to get out of bed on several occasions. I remember a voice saying to me, "No Barry, you can't get out of bed! You're not well!". I didn't know that voice belonged to my sister. I remember that I was having pains down my back. What I was told afterwards, was that it was probably the meningitis spreading down the spine. The next thing I remember is waking up in the Intensive Care Unit.

Bacterial meningitis

"I starting vomiting as soon as I came round. Think it was more to do with the ventilation tube being down my throat, though that's just a personal opinion. Shortly after I came round, I had a lumbar puncture done. Wasn't the most pleasant thing I had done, though for me, it wasn't as bad or as painful as I had feared. Whilst it was confirmed that the meningitis was indeed bacterial, they weren't able to tell me what strain it was.

“The immediate suspect was the cochlear implant, but I was told that they had performed a CT scan whilst I was sedated / unconscious, and there was no sign of infection in the left ear. It was then decided to keep the cochlear implant in. I spent three days in ICU, and 11 days in total in hospital. I was tired and sluggish for several weeks afterwards.

The meningitis had returned

“On 6 September 2016, not even a year later, I felt very tired and sluggish and lay down for a nap. Later that afternoon, I woke up with the same, crushing headache, and started vomiting again. I knew the meningitis had returned.

“I remember calling my sister and saying to her that the meningitis had returned, and that I was going to call the doctor out. But something made me dial 999 and call for an ambulance instead. Considering how critically ill I became, I believe this action saved my life. I honestly believe that if I'd had to wait for a doctor to come out to me, I wouldn't have survived.

“I can vaguely recall the ambulance journey to the hospital, and I do remember walking in to the Emergency Department. But soon after I lay down on a trolley, I'm told that I slipped into a coma, and became totally unresponsive, even to pain. I was also told that my sisters had been told by doctors that they didn't think I was going to survive. And if I did survive, that I could well have brain damage, paralysis, hearing loss, sight loss, learning difficulties, behavioural problems, among other things.

“I spent about three or four days in a coma. My first memory is of one of my sisters at the side of my bed. I had the tube down my throat, and I tried to ask her if it was meningitis. Thinking about it, she tried to avoid the question. I asked her again, and she said, "Yes, it was meningitis". What I didn't know at that point was how ill, or how comatose, I had been.

Started hallucinating

“When I woke up again, I started hallucinating. I don't know if it was the meningitis, the drugs, or a combination of both. I was to spend five days in ICU, and 28 days in hospital in total.

“On day nine, I got a visit from the Infectious Diseases team. When they told me who they were, I had visions of being whisked off to an isolation unit. They said that the second bout of meningitis had Staphylococcus and Pseudomonas infections, which in their words, was consistent with having a cochlear implant infection, and recommended its removal at the earliest opportunity. It was also initially thought that the meningitis was caused by a bone infection, and that I was facing being in hospital for several more weeks. It turns out that it was a soft tissue infection, which got in through the cochlea (one of the organs in the inner ear) and spread upstairs.

“On day 20, I had the cochlear implant surgically removed under general anaesthetic. I was to spend another eight days in hospital before I was allowed home. Although doctors disagree, I still firmly believe it was also the cause of the first bout.

“I honestly believe that had it not been for charities like Meningitis Now, researching into treatments and vaccines for the various types of meningitis, I would not be here today.”