E-mail help

Today I got a great e-mail from a lady in Wales who had a similar procedure done for cluster headaches. It took her three years to fight HCW and get the funding, and she is full of very useful advice. I'm very grateful to her.

Took the form into the GP's to get copies of the letters and we have a meeting with our AM on Monday. We need to clear up the issue of the ethics approval prior to that I would imagine.

Today I also had physio on my leg, which was badly trodden on by a horse in December - I've been enrolled on the lower limb exersise class to help strengthen the ankle which was affected when the shock wave from the impact swept down the leg. They say it is going to be a bad scar on the inside of the leg above the ankle, despite nearly 2 months of physio. I'm pretty unbothered, though I do hope that it doesn't prove painful to ride. It sound sick, but it was a novel and twistedly nice thing to have such a graphic injury for people to ooh and ahhh over - its hard with TN as you look perfectly ok, although I do go a very strange colour when I am really bad, so its hard for people to appreciate the pain or assess how you are feeling.

Niki

Been to the GP

I went to see my GP today - he thought I had come in in response to a call about the letter, so was all geared up to give me bad news - but I hadn't had any call from my GP surgery, so would have been in blissful ignorance if my Dad hadn't called HCW to ask. Letter went out on 11th. The nasty GP is nominally in charge of my notes, so should have let me know.

Anyway I have asked for copies of the letter from HCW, and the letter that nasty GP wrote to HCW. The letter from HCW actually says that it is refusing the funding based on the fact that this is experimental surgery and hasn't been approved by an ethics committee - something that I need to check with Oxford as if this is the reason the ball is totally in their court and any amount of press etc is useless. I think that there is basis to argue that it isn't an experimental treatment however.

I've also decided I need to write to Prof Aziz and get him to write me a statement/letter reiterating what he said back in August, that he was very confident that DBS would help me. I need this to keep my fight going inside me, as naturally doubts creep in, especially when someone says you are just chasing surgery after surgery, wanting a miracle cure. I'm more intelligent and realistic than that. After my 3rd op I had a good year of 50% pain reduction - it was wonderful, and I would be happy with that now.

I've also asked for a blood test to check my blood in all areas, just to check that I've not got a problem that is exacerbating my fatigue, as with all the analegsics I'm taking I can't nessessarily feel an ear infection or UTI.

Niki x