Hi all 
As I have said before in my other post, I have been offered TORS surgery, I was put on the waiting list for it and my ENT doctor said that I can think about it and postpone the surgery if offered or I can be taken off the waiting list if I change my mind. He seemed like a lovely doctor but he has not really dealt with Eagle’s syndrome before so I am scared to go ahead with the surgery just in case complications arise and I feel worse after having the surgery than I feel now. (He has only one other patient with ES on his waiting list)
I live in Leeds and I was thinking that maybe I should organise a private consultation with Dr Axon (Cambridge) or Dr Hughes (London) as they seem to be very experienced.
Could you please give me some advice about how to book an appointment with them? If I organise a private consultation, how do I get my CT result sent to them? Do I ask the GP for a private referral for that? I think I will stay on the list for the TORS surgery for now just in case Dr Axon/Dr Hughes are not happy to operate on me. If Dr Axon/Dr Hughes are happy to operate, can they put me on their NHS waiting list? I know Dr Axon has limitations at the moment so he may not be able to help.
Thanks for your help 
Usually you go through your GP to get a referral privately, but I think some members have phoned directly, and looking at the websites you can book an appt online. Both Mr Hughes & Mr Axon are with Spire health, I think Mr Hughes is with other organisations. If you go through your GP they should be able to send your CT results to them.
@PatientD gives info about Mr Hughes in this discussion:
Surgery with Mr Hughes London this Friday - General - Living with Eagle
There seems to be differing accounts of whether you can then go on the NHS list after you’ve had a private consultation- one member was told that everything had to then be done privately, but one of our other members was put through the NHS by Mr Axon- however, the team who decide whether surgeries are justified or not then refused her the surgery!
A good idea to stay on the TORS list for now, & see later what happens.
Head and neck surgeons might not be familiar with ES but should be used to operating where the styloids are otherwise, perhaps you could have a search locally ?
Hi, I’d only add that on scans in my experience the secretaries can get access to the scans prior to the consult if they know where scans were done, date & your name etc. they just request it from relevant hospital systems. D