In some aspects I agree with you. The brachiocephalic is contributing more as the pressure gradients there are higher (but not much) and I would have pursued this if it was an option. However, I have a a lot of tension and discomfort on the right of my face, neck, jaw, travelling up into my ear and mostly at the back of the throat exactly where the styloid/jugular is. The pulsatile tinnitus is in my right ear too. All I can say is I know I have symptoms related to the right side because I can feel it. It’s perfectly possible yes that this right side compression would be asymptomatic, without the build up of pressure from the left side too, but the right side is definitely impacting substantially and incidentally, has the far greater build up of collaterals. Put it like this, if Mr Axon was in my body I’m pretty confident he would have proceeded.
Also, he stated that there wasn’t a surgeon in the world who would operate on the brachiocephalic at the moment. So the option of reducing the pressure on the right may or not have helped, but I now have no other options.
Unfortunately, the team in the UK are under pressure recently to justify their procedures. Mr Axon said that he treats the styloid process and pulsatile tinnitus primarily and that the fact that I have no other options is unfortunately irrelevant. So I could have this operation if I had fewer and milder symptoms it seems, even with the associated risks, and it’s far less invasive/risky than a brachiocephalic by-pass even if it were an option.
Mr Axon didn’t look at the scans again - that’s not why he changed his mind. The group had another meeting this week, where one of them brought up the brachiocephalic and so he called me and asked which symptoms bothered me most. He had not associated me with the patient booked in for surgery privately on Thursday and was calling as a follow up to my cat venogram on the NHS. What happened is they had a meeting last month where I came up as a private patient and they agreed the surgery and then they had a meeting this month where I was discussed as an NHS patient. It seems I prioritised my symptoms in the wrong order this time and sadly it’s as simple as that. More recently Mr Axon is trying to concentrate on the pulsatile tinnitus, which although pretty constant, I’ve learnt to live with, so it was not a high priority for me. The ballooning of the right jugular vein also gave me relief of symptoms for about 10 days which they knew about. The ballooning of the left brachiocephalic did the same, so not markedly better. I understand their need to be cautious and follow a strict protocol and I don’t doubt Mr Axon’s compassion, but with my knowledge of my own symptoms and the alternatives available I think this was the wrong call.
I now have to start again looking abroad for someone to help.