After waiting over three weeks for someone from the hospital to phone me, as promised, I write an email to my consultant's secretary to explain the situation.
On Thursday my consultant neurosurgeon, Mr Patel, called me.
Overall, he was pretty annoyed that his team had said "nerve damage" as he says there is no reason to think that, and it would be that the nerve has been irritated by the surgery and the placing of the leads. He said not to listen to what his juniors say and to take it with a pinch of salt, as they don't understand this specialist procedure.
He also said that he was aware that I was in hospital for longer than expected but no one had tried to contact him at all. After I explained that they were trying to speak to him before they said what they said but had been unable to get hold of him. He said that they know how to get hold of me but I heard nothing. Therefore, I get the impression that they didn't try hard enough!
1. There you go! Even Mr Patel is now stating that occipital neuralgia isn't well known or understood, not even by neuro registrars!!!
2. He never gets annoyed, he is the most laid back doctor I have ever met. This must have really annoyed him!
Anyway, now I have spoken to him, I obviously feel less worried about the future of this pain and know that it should settle and ease. However, no one, not even Mr Patel, can say how long that will take.
At the moment I still have the severe pain often. Occasionally I do shout out with the pain. Anything that I do causes this pain at some point. I am sure I am able to disguise the pain better now, as I am more used to it. BUT then that means that I am, as always, being misinterpreted of what I can manage.
So, I take each day at a time but yet I forget, until it happens, how bad the pain is.
I did also hear from the HR people at work, who called me on hearing that my doctor only gave me a 2 week doctors note as it would cause less worry and stress about returning to work before I hear about the 'exception' that could be made to allow me more recovery time. I had emailed to tell them this, also stating that I a still in massive pain and am not safe to drive as of yet.
So they finally made the decision that I don't need to return to work before the summer holidays. They will allow me that final week and not start the attendance policy until September. Therefore I won't trigger the formal attendance meeting until after the first week of next academic year.
This is a relief, as it was always asking too much to expect me back to work this side of summer, but with this unexpected severe pain, I know I couldn't teach, not even for an hour. It annoys me that it took my email about added stress to get them to make a decision. And also they kept that they had the power to do this hidden from me until now.
This makes me feel, as always, like they aren't interested in me as a person, but as a number, a commodity, a nuisance.