Hi im writing this trying not to cry partly because it makes my head so much worse. Anyway my referal to mr hughes in london has just been rejected because i should see ent in scotland. However there is no ent who will even see me in scotland as they have said that they don’t deal with eagle syndrome. There is literally nobody in scotland that does. Its taken me 2 and a half years to firstly get a referally to neurology in glasgow (took a year) for them to then contact me hughes see if he would accept the referal he initially said yes (that took another year) and then for the funding application from nhs scotland to be approved and the referal to go down which got sent twice took another 6 months. Only to be told no i should see someone in scotland. There isnt anyone at all and i already have the diagnosis which came from a vascular mri in 2023 and ive spent the whole time trying to just survive until i can see someone who knows what to actually do. I feel incredibly lost now who else can i try and get to see me.
Ive just been given more of an explaination as to why my referal has been rejected and i quote
“Due to current high demand of cancer patients awaiting surgery the consultant is currently declining routine surgeries and has advised that the surgery is done locally in your area or nearby”
Is the surgery classed as routine when theres only 3 people that do the surgery in the uk?
@Soph, I am sooooo sorry for all the time you’ve spent getting your referral & funding & waiting. Since you have IJV compression, Mr. Hughes is not the right doctor for you as he doesn’t do the proper surgery for IJV decompression. Thus his rejection is a blessing in disguise. The doctor you need a referral to is Mr. Axon in eastern England. He specializes in the surgery you need.
Since you’ve already “jumped through all the hoops” is it possible to get a new referral but to Mr. Axon this time w/o starting all over again? I hope that since your imaging shows IJV compression, Mr. Axon wouldn’t turn you away in deference to cancer patients.
•Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospita
I thought he wasnt accepting patients at the moment?
Ive just left their secretary a voice mail so hopefully i will hear back
I’m very sorry to hear of your news with Dr Hughes and how long you’ve had to wait. Regarding seeing Dr Axon, do you have pulsatile tinnitus? If you don’t, you’re unfortunately off to a bad start and he will likely fob you off, as he did with me and many others. He’s very hyper focused on this particular symptom. Just thought I would warn you as you’ve already had a very tough time with being fobbed off.
I do have pulsing tinnitus but its not constant its worse when i have more pressure in my head. Its not my worst symptoms but it is a symptom. So hopefully thats enough
Have you managed to see anyone else after he fobbed you off?
I’m so sorry that you’ve been fobbed off after waiting so long, it’s just crazy that there’s so few doctors who will treat ES in the UK. Hopefully Mr Axon will take you on as a patient, if you have the pulsatile tinnitus as a symptoms then mention that & don’t downplay it! @Rosie has seen Mr Axon privately & is now on his NHS list so he is still doing some surgeries, but not as many…
If you don’t get anywhere with him there are another couple of names added to this list that we’d heard of recently you could look at.
And did you ever look into Mr. Thomas Milner, Queen Elizabeth Hospital, Glasgow, he does robotic TORS surgery?
Sending you a hug 
Hi @Soph I have been trying to go through your threads, have you got a copy of your CT with contrast showing the compression. If you do it maybe worth paying for a private consult with Mr Axon £500 for 35 mins, it was definitely worth it for me, but you need to make sure that he has access to your scan and any other supporting documents prior to the appointment to ensure you get the best from your 35 mins as it goes super quick. Like @Jules has mentioned I am now under Mr Axon through the NHS, after pushing extremely hard for an appointment at Addenbrookes. Mr Axon is definitely the consultant you need to see for IJV compression and he is especially interested in Pulsatile Tinnitus, which I have constantly. Let me know if you need any other info and I will do my best to help.
Regards Rosie
If mr milner is part of ent at queen Elizabeth, the department refused to accept the referral and said they do not deal with eagles. Ive been in contact with mr axons secretary and shes given me the info for the referal to go to so hopefully when the glasgow neurology secretary is back on monday we can figure out sending the referral asap. I wont find out until they have the referal if they will accept it but we will have to see.
Are you still on the waiting list for mr axon or have you had surgery yet? I dont have an ct with contract i had a vascular mri done i do have a copy but i cant access it on my laptop as its too old. So im not sure how to get that to him and I’m not sure if its included in the referral. I wonder if anyone knows how much the ct with contrast costs? I have been wondering about doing the appointment and scan privately with him but im unsure.
Hi @Soph I am now on Mr Axons surgery waiting list under the NHS, 15 months so I dont expect to be offered surgery until later this year. I looked into a private CT with contrast and I believe it was over £1000, but fortunately I was offered one on NHS quite quickly through Neurology. I think Mr Axons NHS list is around 12 months for the first NHS appointment for ES, I pushed hard as my ECA is also wrapped over the end of my Styloid Process, so I was quite concerned about that, although Mr Axon didn’t seem concerned. I believe your MRI can be shared between hospitals so I am sure this can be organised, but I am not sure if that will give Mr Axon enough detail.
Rosie
Im not sure it will work as easily sharing files between nhs scotland and nhs england they use different systems. I am thinking of going private for my first appointment and scan if it’s needed but I’m not sure if i can figure out the money side of things. But its good to know roughly how much it might all be.
I hope that you can work something out