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 didnât realize it was one of Dr. Osborneâs early ES surgeries though.
@Pollytwix - Iâm very sorry to read what youâve been through & that youâre 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 âit is too dangerousâ.
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 didnât 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, hereâs a link to the discussion, you can click on a memberâs 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 âThomas Milner, my surgery took place Queen Elizabeth Hospital, Glasgow. I was his first ever styloidectomy. 
â
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.
Itâs an interesting technique to help maybe short term? Is there any info from him about how many heâs 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, itâs 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 youâre able to see one of the other doctors, and great youâve managed to educate another doctor! Frustrating that they wonât send patients to England though! I hope that you donât 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.
UPDATE
Well finally got an update, after GP chased the ENT consultant up twice. Saw GP and he and head of practice are fuming at the reply but have their hands tied.
The letter states that the head and neck consultant couldnât find anyone in the area who deals with Eagles. Therefore their suggestion is, that I find a specialist privately have a consultation with them, (of course pay for it out of my own pocket, which is difficult as I am a full time carer (dont like using it as an excuse but there it is)), ask if they will do it on the NHS, if they will, I have to get the information and documentation give it to my GP who then has to pass it on to ENT in Inverness and then they will look to see if they can then refer to this private consultant, and have any procedures that way. GPâs interpretation is they do not know what to do so they have thrown their hands in the air and told me to find out how to solve it.
Hope that makes sense, still fuming. Alli
Iâm so sorry that youâve been messed about like this! Itâs so rubbish that theyâre expecting you to pay for a private consultation in the hope that you can then get them to agree to surgery on the NHSâŚDid you look into trying to get your ENT or GP to refer you to the surgeon @Lemontree is seeing, we mentioned it earlier in the thread? Hereâs her update:
Suregry with TORS - General - Living with Eagle
Sending you a hug, and donât give up, keep fighting 
Hi Jules, thanks for your reply, yes gave him that info, but they basically dont want to do anything about it. Wont say the words that nearly came out my mouth as GP was telling me, (he was about to stab me with a large needle lol)
Still doing research to see if I can find a way to contact the Queen Elizabeth hosp. Will keep everyone update. Thanks again for your support Alli
@Pollytwix - So frustrating for you especially since youâve provided the name of a doctor you know does ES surgeries & still you canât get referred. I donât blame you for being angry & so upset! In my mind itâs unthinkable that the doctors youâve had contact with are so useless & unwilling to help you! Tragic, really!
Youâre doing the right thing by continuing to push. I donât understand why your GP canât refer you directly, but Iâm in the US & know things are done differently here. I hope youâre able to make headway w/ Queen Elizabeth Hosp.
Looking forward to your updates. Iâll pray for you to find a way to see @Lemontreeâs doctor.
I do have a feeling this NHS block on surgery is about cost rather than surgery outcome or safety.
Is someone is suicidal because of symptoms isnât surgery a lifesaving operation?
The NHS really is a joke.
In my mind, surgery would be a life saving operation in that situation, but in general, I think ES surgery is life saving from the standpoint it affects most of us mentally/emotionally pretty significantly. Too bad doctors & those who make decisions on which types of surgeries should be funded & which arenât really necessary donât see it that way!