I have approached Doctor Axon who has said he’s not sure he can help. But he said to try and get a CT venogram on the NHS. How do I get this? I visited my GP yesterday and they were happy to refer me privately, but I would have to pay to see ENT before they did anything.
I think a consultant has to order a CT on the NHS, and I would guess that the waiting time will be pretty long…I’m surprised that Mr Axon wouldn’t request a private CT venogram, or did you not want to have to pay for one?
Are you seeing your neurologist again? If so, then that would be your best bet to try and persuade them to refer you for one, show them some of the research papers about ES, as you’re already ‘in the system’…
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I’m trying to get the neurosurgeon to refer me, but as he’s never heard of eagles I am not having much luck. He’s putting it down as a complex headache. Dr Axon wasn’t sure if my symptoms suggested eagles, but I just want to be sure. I will now have to pay again to see a neurologist to get them to refer me.
Oh no, it’s just going round in circles, so frustrating! 
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