Hello Everyone

You’ll recall from my last post that I was scheduled to undergo three tests before the peer review in September, but I had gotten so sick last weekend that I may not be able to undergo the ABR last Monday. Well, fortunately, my illness subsided. Turns out I picked up a really nasty bug from theatre at Sunninghill Hospital. By Monday I was a lot better so Mom and Dad decided to proceed.

I took my sedative and over an hour later I was asleep in Yvonne’s office, with more probes on my head and this time some in my ear. The ABR results are not great – my right ear has no hearing whatsoever. Two possible reasons are that the cochlea has ‘died’ and the second that the cochlea nerve to the brain has malfunctioned. If it is the first, we go back to our biggest fear ever – the steal effect. Essentially this means that the AVM in my brain is ‘stealing’ important blood and oxygen from other parts of my head, this time the victim was the cochlea. We won’t know this for certain, until the angiogram is conducted on Thursday.

As if getting this bad news wasn’t enough, my PTSD decided to rear its head in a big ugly way this week. We all suspect it’s as a result of having the EEG last week, being in theatre and then being sedated again on Monday. All these things trigger bad hospital memories in me and my syndrome takes over. Mom and Dad had a few hectic nights as a result, where I was up and unmanageable to 3am in the morning!

Some exciting news on Friday was that Nina, Jaco, Gené and Kate popped in for an extremely quick visit. It’s been 2 ½ years since Nina moved to New York for her work, and only the second time we’ve seen her since. It was so nice to catch up, even for a little bit.

Well, that’s it for now. Please keep me in your thoughts and prayers on Thursday as I undergo the angiogram. Needless to say it is highly risky, and the results of the test may not be favourable – so much seems to be going wrong at the moment that it’s difficult for us to stay positive.



Video 1 – Stationery Delivery (click here)

Photo 1 After I took my sedatives I decided to don a helmet in case I fell on my head

Photo 2 Asleep in Yvonne’s lab

Photo 3 Wired up. Yet again

Photo 4 Back home where I did a marathon sleep

Photo 5 Doing some playing and planning

Photo 6 Minecraft time

Photo 7 Selfie!

Photo 8 Tennis with Mischka

Photo 9 Physio with Kim

Photo 10 Tree climbing

Photo 11 Hard at play




1 Comment on 441. Two Tests Down With Bad Outcomes

  1. Tom and Di Fincham says:

    Our thoughts and prayers are with all

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