After undergoing routine cochlear implant surgery, Barry experienced a series of unexpected
challenges. He became ill not just once, but twice, with bacterial meningitis. Here’s his 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.
“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.
“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.
“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.
“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 Spencer Dayman Meningitis
Research, researching into treatments and vaccines for the various types of meningitis, I
would not be here today.”
