Week 13 – Neuro-otologists – the specialists

I can’t tell you the relief I felt to finally get my appointment at University College London Neuro-otology Department.  Despite all the effort of travelling into London on the underground with vertigo and new hearing aids,  it was all worth it because finally I was being seen by people who knew what they were doing and who seemed to have time for me.

I was passed through a series of tests specifically designed to assess my balance and hearing. These included rotary chair testing, various audiometry tests and Caloric Reflex Test. None of them were particularly uncomfortable and I was just glad to be assessed properly.

At the end of it I was given a very straight diagnosis by Dr Agrup, a specialist in the field and author of numerous papers on sudden hearing loss and vestibular disorders. She informed me that my hearing has been lost and will not return, and that my balance function in my inner ears has been lost and will not return. Jaw drop.

She went on to say that with many months of vestibular rehabilitation training my brain would learn to balance without the use of my inner ears, through sight and touch, and she assured me that she’d seen many people go on to live normal lives, including driving, dancing and yoga for example. But, for the rest of my life I would notice the loss of balance at times when my brain would normally depend on the inner ear – for example when its dark or when I cant feel around me.  Diving is now out of the question and I should be very careful when swimming.

But my hearing loss, she agreed, would be the harder thing to adapt to. When I discussed my problems getting responsive treatment for my hearing loss so far on the NHS she seemed to share my aggravations. I got the feeling that despite the clear treatment advice she gives in all the scientific papers she’s contributed to, she knows this isn’t happening on the ground. I wondered how many hundreds of people like me come through her doors, facing permanent disability, because of the failure of the NHS to respond appropriately … and how sad and frustrating it must be to watch it happening every day. I hope I can play a role in raising this to attention (if I don’t take direct action myself that is).

2015 May 13 - CopyBecause my audiograms show signs of ongoing deterioration she expressed some concern that there might be an autoimmune element to my problem and referred me on to a specialist. She gave me clear instructions to go straight to A&E to get steroids if any further hearing loss occurred and said that its important to choose an A&E that has an ENT on call as not all of them do. She even said she would write me a letter to take with me to ensure I wasn’t turned away again (as I had from Barnet General Hospital a month earlier).

Despite the fact that I hadn’t heard much happy news, it was still a relief to have a professional expert finally agree with me – that yes I should have been given steroids;  I shouldn’t have been turned away repeatedly by the NHS;  I do need VRT; and that all those things my ENT said to me were utter rubbish (I’m still deciding whether to name and shame him). She has been the first professional I’ve met so far who agreed that the patient should challenge their doctors and push for the treatment which they feel they need. So this made me feel better.

The only other news this week is that my NHS hearing aids arrived (Otikon Spirit Synergy). The sound quality is actually not bad for budget aids but they are super-huge and bruise my ears after a few hours. It’s like having Micky Mouse ears. The NHS agreed to help try and make them more comfortable … in a few weeks!

Otikon Spirit Synergy compared with Phonak Q90
Otikon Spirit Synergy compared with Phonak Q90

So I went back to wearing my Q90’s with my ComPilot. The ComPilot is an complete essential as it allows audio, notifications and phone calls to be sent by bluetooth straight to my hearing aids. Without it I wouldn’t be able to hear phonecalls. I’m not keen on it being around my neck all the time but unfortunately my need to look good has to take backstage to my need to survive in this world without hearing!  This is me looking deceptively happy with my Compilot.

Phonak Q90 CommPIlot
Me wearing the hottest new Phonak Q90 CommPIlot