Browsing the Edinburgh Science Festival programme last night I spotted a talk called What's Going on in His Head and immediately booked tickets. James Piercy is a science lecturer who had an experience very similar to my own, a road traffic accident leaving him in a coma, being flown to hospital and having a long slow recovery. He even has the same double vision needing an eye patch.
He gave full details of the accident and what was done by the emergency services to save his life (but sadly not his wife) and the immediate treatment he needed. A probe into his head monitored the pressure and meant that medication could be given when it was getting dangerously high.
He showed the CT scan he'd had and the MRI scan including the damaged parts of his brain. Then he said the most important part "Found the damage just medicate it? Well no, there's nothing that can be done for it." an important point that it would have been useful to been told honestly by doctors when I first had this.
I asked at the end why it is neurologists don't explain the problems you'll have and the prognosis clearly and he said "it's because they don't know". And indeed they don't know how complete a recovery will be or what other symptoms will happen, but that's hard for a professional to admit and maybe some patients don't want to hear that.
He pointed to the Head Injury Prognosis site which uses data from a study with the least sympathetic acronym ever: CRASH. It gives me an 11% change of dying and a 47% chance of being severely disabled. I'm very pleased to have beaten those percentages.
He gave an interesting metaphor, that a brain injury is like someone pulling out the power cord of a computer. It loses the last few minutes of unsaved work then it reboots into a safe mode with limited functionality. That image fits in nicely.
He spoke about how he's lost his propreoception which is the awareness of where your body parts are. A test it to put a finger infront of your face and another behind your head and bring the one behind over your head to touch the other. If you can do it reasonably with both eyes closed you have decent propreoception. After his brain injury he couldn't do that which is just like when I tried to use my non-dominant left eye to see and ended up walking diagonally into the middle of a road.
He spoke about the Abbreviated Mental Test score, a test to check the cognitive abilities being made up of simple questions like where are we and who is the current monarch. I've done this and got full marks, always nice to pass a test.
He spoke about the various symptoms that brain injury sufferers get, especially fatigue as something everyone gets, probably because your brain has to take slower paths through its neurons to think about many things.
He called it a hidden disability because nobody can see there is a problem and some symptoms appear just like being drunk. He said he was lucky to have an eye patch because then people can tell there is something not quite right which is a conclusion I've come to as well.
This was an excellent talk and I really hope a video of it is made to put on the internet as it would be so useful to people first getting a brain injury.