Hi there,
Been a member for around 8 years after being diagnosed with Eagles after continual falls and minor blackouts.
Struggled to get anywhere with old GP he retired finally and a new one refered me to ENT, they did a load of tests biopsies etc and decided yes all my symptoms are linked to Eagles.
Using information gained on here got them to refer me to Mr Currie in Crosshouse, Kilmarnock.
That was two years ago, symptoms have been getting worse and GP chased up appointment, heard nothing,.
Today got a letter from ENT which was copied from GP letter saying that they are no longer referring me to get the operations as they are dangerous, and tricky. and usually unsuccessful and current treatment is to just treat the symptoms as they appear.
Has anyone else heard of it or is my local NHS just not wanting to pay for the op.
Thanks
I just viewed a video on youtube from Dr Osbourne about a Veteran that he helped. He does talk about how dangerous the surgery is and initially wouldnt do it. The soldier was clearly suicidal because of the pain. He decided to do the surgery and filmed it. It might be too gross for some to watch but it does show the issue being worked on in a case that was difficult
So there is valid concern about surgery for some.
The patient in that video was one of our members at the time he had the surgery done by Dr. Osborne. I didnāt realize it was one of Dr. Osborneās early ES surgeries though.
@Pollytwix - Iām very sorry to read what youāve been through & that youāre suffering to the extent you are & have been declined surgery. We have at least one member who had ES surgery done by Mr. Currie, but it was ~ten years ago. Below are links to several discussions where Mr. Currie is mentioned. The first one is the member for whom he actually did surgery. The second & third are from members who were declined surgery by Mr. Currie because āit is too dangerousā.
There are other doctors in the UK - London in particular who do ES surgeries where vascular tissues are being compressed or irritated by elongated styloids or calcified stylohyoid ligaments to decompress them. There are many people who have benefitted from ES surgeries over the years, I find it incomprehensible that an experience surgeon like Mr. Currie would turn people w/ ES away unless he had a very bad surgical outcome & decided he didnāt want to risk more surgeries of that type.
Can you get a referral to a doctor elsewhere in the UK? If so, we can give you names of surgeons who have a good reputation & have helped a number of our members.
@Lemontree has recently had surgery in Scotland, hereās a link to the discussion, you can click on a memberās avatar to send them a private message too:
New here from Scotland - Welcome / New User Help - Living with Eagle
A year post op - new symptoms - General - Living with Eagle
@Lemontree said āThomas Milner, my surgery took place Queen Elizabeth Hospital, Glasgow. I was his first ever styloidectomy. 
ā
So maybe you might be able to get a referral?
Professor Ah See at Albyn Hospital will operate to shorten the styloid bone, he is private though, but he needs to be certain first tgat your oain is not coming from the TMJ joint malfunctioning. It is a big operation and comes with several risks attached, However Mr Bodkin, Consultant Neurologist Aberdeen, suggested a 90 second operation under General Anaethetic, where he inserts a balloon to compress the nerve the styloid is touching and push it away from the bone, would be less invasive and comes with less risks. It may cause some loss of sensation in that nerve though, Right now 200mg of Carbamazapine (Tregretol) is controlling my pain.
Itās an interesting technique to help maybe short term? Is there any info from him about how many heās done & what the success rate is? Is there any risk that he could push the nerve into contact with other nerves or blood vessels in the area, itās a tight space? Or potentially squash it against the C1 process instead?
what nerve are they trying to move? It seems this idea might make it more necessary to get the 3d CISS scan.
Very little chance of one of those scans on the UK NHS!
Hard enough in the US. I am still building my case to get one. I thought the name of that nerve might help figure it out. I have not seen anything about this 90 second procedure.
The styloid can compress/irritate up to 7 of our cranial nerves. Do you know which particular nerve Mr. Bodkin is trying to compress since your symptoms are likely being caused by more than one?
Hi all and thanks for the support and advice, had an ENT appointment today in local hospital.
Was told Mr Currie wont do Eagle Operation anymore as there are two many veins in the vicinity of the processes and far to dangerous. Was also told that i have a benign mass on my frontal tonsils, that is news to me. Was being told there was no one else who could do anything and they would find treatments to help, stopped him and said there is possibly one in Glasgow and a new procedure in Aberdeen, was asked how the hell did I know that, told him about this brilliant support group, he is now away and going to research and contact these two people to see what they can do. Thank you all again without this group I would of been fobbed off without any knowledge about the alternatives. Also the NHS wont send patients South unless its life threatening. Alli
Well done for advocating for yourself! I hope that youāre able to see one of the other doctors, and great youāve managed to educate another doctor! Frustrating that they wonāt send patients to England though! I hope that you donāt have to wait too long as well 
I second all that @Jules said & will add that your efforts paid off as the doctor you saw is doing research & contacting the doctors you mentioned to him & will be hopefully helping you after all by making a referral for you.