• St. George’s – 1st Appointment

    September 4, 2008 By in Uncategorized Leave a comment

    So I know I can be stubborn and all those years of being told its an unattractive personality trait …. Alice needs her parents to love her, but now she also needs her parents to do their best for her, all the time and never ever accept 2nd best.

    We have now entered the murky world of the NHS. You get an appointment 2 ways in the NHS, either you wait and wait and wait or you make a nuisance of yourself and they give you an appointment to get rid of you, my desk at work is covered with sticky labels, never give us a direct dial, home email or mobile number, we will use it to Alice’s best advantage.

    So we reach the day of the all important appointment with Dr Wendy Albuquerque.

    Things you should know about St. Georges audiology – everyone is really nice, the hospital is being rebuilt, parking is a nightmare and expensive and finally…. appointments never run on time.

    Anyway we finally get into see Dr Wendy. She tests Alice using Visual Reinforcement Audiometry (they play a loud noise and….if you look in the right direction, you see Pooh bear dancing) – Alice likes Pooh, but only responds at moderately to severely deaf levels. Dr Wendy agrees with the dys-synchrony diagnosis and suggests further testing under general anaethestic to confirm. She wants to cautiously manage Alice, so is unsure about hearing aids but agrees to discuss Alice with a colleague at Great Ormond St, Dr Tony Sirimanna and refer Alice up there. So we agree to the tests and go home – confused, she responded better in the tests… but what she hears is useless ?

  • Alice’s First Appointment With David Selvadurai

    August 28, 2008 By in Uncategorized Leave a comment

    “You’ll hear from St. George’s in a couple of days” we were told.

    As it transpires, the soonest we could get an appointment at St. George’s was some six weeks away. Having just had the news that little Alice was profoundly deaf, there was no way we could wait that long.

    Immediately following the ‘diagnosis’, we all went down to our flat on the Devon coast for a few days to try to take it all in. There was no point sitting around at home navel-gazing and, whatsmore, the children (we have a son, Joseph, who is 3) needed a holiday.

    Whilst sitting down in Devon and trying to come to terms with the news, we decided that the best course of action was to try to arrange a private appointment to see one of the doctors from St. George’s – but who? We had no names and no leads. The admissions staff from the hospital were a little less than forthcoming.

    Fortnately, a google search turned up the name of David Selvadurai, Consultant ENT surgeon, who heads the Cochlear Implant Programme at St. George’s. We phoned his PA and managed to arrange an appointment for the following Thursday.

    Armed with a list of questions, we arrived at the Lister Hospital in London to see Mr. Selvadurai. He had not seen Alice’s notes, but from the letters we brought with us, he managed to get a good picture.Instantly sympathetic and reassuring, David then went on to explain about a condition called ‘Hair Cell Dyssynchrony’ that could explain the differences in Alice’s OAE and ABR tests. He suggested we see through our appointment with St. George’s Audiology and then contact him again when they had had a chance to form a better opinion.

    He also talked about Cochlear Implantation and how, children with this ‘dyssynchrony’ often did well with an implant. He suggested we get aids for Alice as soon as possible as she would need to have tried these first to see if the would provide any benefit.

    We thanked him and shot off home to visit Google, a dear friend over these past 4 months. And with that, we entered the world of Auditory Neuropathy/ Auditory Dyssynchrony (AN/AD)