1. Mr Graham. 150
Harley Street.
Very clear with feedback. Runs a Cochlear implant
program.
Said unlikely for hearing
to return. Must now be very careful about how the cochlea heals, after being
inflamed. There is a chance of new bone growth sealing them and
preventing cochlear implant surgery. Monitor via MRI scans and if signs
of ossification then the operation becomes urgent. Ossification can occur
within 4-6 weeks of infection.
I still have infection in my right ear, the left ear is clearing.
On the balance side – I have "bobbing oscillospia" – i.e. my eyes have lost the ability to auto track my head movements, so they wobble around. This blurs the world on movement – for me anything past 3 meters. Also simple balance is still a problem. These conditions are separate. The balance organs may not heal but the brain and the rest of the body can learn to adapt. Time will see on this but looking into Physio Therapy. Balance is cognitively very deep and learnt as a toddler, so takes a while to re-train the brain.
I still have infection in my right ear, the left ear is clearing.
On the balance side – I have "bobbing oscillospia" – i.e. my eyes have lost the ability to auto track my head movements, so they wobble around. This blurs the world on movement – for me anything past 3 meters. Also simple balance is still a problem. These conditions are separate. The balance organs may not heal but the brain and the rest of the body can learn to adapt. Time will see on this but looking into Physio Therapy. Balance is cognitively very deep and learnt as a toddler, so takes a while to re-train the brain.
2. Mr Narula. Princes
Grace Hospital
A pleasure to deal with and
clearly knows his stuff. Also took
care to consult with fellow specialists about his choices. His CI implant surgeon of choice is Shak
Saeed. He agreed with Mr.Graham
but thought steroid shots, into the ears could help. Mainly to
reduce scarring as they heal and lower ossification risk. His approach
is to try everything, if there is a chance it can help. Stayed in London
1 extra week for these shots. First was under general anesthetic (so they
could have a good poke around) second under local. He didn't conduct MRI as too soon with current
inflammation. He advised Bi-lateral CI surgery as the best course.
Feelings
Now I accept I am permanently deaf and
my previous worst-case scenario of implants, may be at risk. Seems the
worst cases are getting worse. My family life and work are in Tokyo. Both
London doctors agreed this was a good place to receive implant surgery. My
brother gave me a good phrase “adapt and survive”. A few tears but not so bad, kind of feel that people
get sick and bad things happen whatever – this one isn't going to kill me. 
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