7th November 2008 – 11th November 2008
After a whole day of talking about Alice (not a difficult thing to do given how wonderful she is) we sleep (very well I might add) on what to do next.
Do we go down the GoSH route or stick with David Sevadurai at St. George’s? GoSH have performed some 300 CI surgeries and are the centre of excellence in the South of England and the St. George’s CI programme only 20. Heart or Head?
Fortunately, both our hearts and our heads tell us that David is the right man for the job.
We email David and Wendy at St. George’s to let them know of our decision and also to seek their advice on the EEABR/EABR and Otoferlin tests.
David replies on Friday evening (like I said before – does this man never rest) whilst I am sitting in my usual haunt of the Red Rose Indian Restaurant in Surbiton awaiting a takeaway.
I’m not sure Roki, who runs the restaurant, is used to an in-his-thirties man sitting at his bar crying. David is delighted we have chosen to go with him, but one thing he said will stick with me for a long time ” I will always strive to achieve the best outcome for Alice, and you”. Not a difficult thing to say, but to us both, it meant the world.
Several emails later and the process seems to be underway. We are just awaiting the details of the first appointment on what will, no doubt, be a lengthy assessment process. David is busy speaking to experts around the world to seek opinion on whether EEABR / EABR is worthwhile given the good results from the MRI. At this stage, he feels not.
Just to top it off, we receive news from Tony Sirimanna that he feels Alice’s inconsistent VRA results could be because of an “abnormality of the neurotransmitter that normally flows from the hair cells across the synaptic cleft to the nerve endings. It is just supposition that perhaps while there is enough transmitter she hears better, but once depleted she doesn’t hear as well for a while”
It’s all Greek to me but sounds plausible – David agrees, but reminds us this is only a theory and will have no impact on her CI outcome as the CI bypasses this junction anyway. Dr. Wendy also agrees that it is worthwhile pursuing the Otoferlin tests.
We are getting somewhere. We are both happy.