Hi all,
Newbie here: my dentist discovered yesterday that I have completely calcified stylohyoid ligaments. It explains a LOT!
I have looked through posts regarding UK doctors and Dr Patrick Axon seems to be very highly regarded. However there are a couple of comments saying that he is dragging things out and taking a very long time to do anything. I want this sorting quickly, for obvious reasons!
Is the delay because of a long waiting list and him being extremely busy, or is he reluctant to operate on patients these days?
We are in coastal North Yorkshire; if anyone has other doctor suggestions.
Thanks!
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Hi @Jacqui - Welcome to our forum! Mr. Axon used to do ES surgeries regularly especially for those who needed vascular decompression, but the medical board, under whose auspices his practice falls, changed their policies regarding ES surgeries which has very much hampered the frequency with which he’s able to do them & has also required much more specific patient selection thus resulting in less patients being offered surgery & longer wait times to be seen by him, unless you pay privately.
Mr. Hughes in London has recently been a go to for a number of our British members. He is also a very experienced ES surgeon & so far doesn’t have the limitations that have been put on Mr. Axon.
•Mr Jonathan Hughes, London (ENT, published an article in ‘Top Doctors’ website) Sore throat diagnosis - Eagle syndrome .
Mr Jonathan Hughes : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk) Practices privately with the Circle Health Group in London
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Hi @Jacqui welcome to the forum 
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Thank you, that makes sense. So is Dr Axon willing to operate, without a long wait, on private patients? There is a chance my health insurance might cover it.
He’s with Spire health care:
Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital (spirehealthcare.com)
He has done surgeries on members privately, & will do virtual consults, but it’s worth checking first if he would remove calcified ligaments; he’s a skull base surgeon and removes the styloids back to skull base, he uses an incision behind the ear, so I’m not sure if he’d be able to remove calcified ligaments that way. (With ES you can have elongated styloids, or calcified stylo-hyoid ligaments, or both. It’s not always possible to tell where the styloid ends & the ligaments begin when they’re calcified)
Mr Hughes also does private work; he seems to work at several private clinics in London.
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Thanks so much, that’s very helpful. I did ring his secretary yesterday to try to get some info but she was extremely unhelpful! I will see if I can find an email address.
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Mr Hughes private sec at Cleveland Clinic is very helpful - JHughesMedSec@ccf.org.
Or you can book consult slot yourself at circle Group website for his other clinics.
I gave up on Axon help so no longer have his sec contacts. Good luck. D
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Thank you, I have just had an appointment with Mr Hughes. Hoping he can help!
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Hope it’s not too long a wait & let us know how you get on!
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Hi Jacqui- just wondering how you have been getting on? I also live in North Yorkshire. Just been diagnosed by a Max Fax consultant and referred to ENT but not heard from them yet. Any advice would be great! Thanks
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Hello!
I saw Dr Hughes (twice) and we were about to book the operation but then he told me about the report from the MRI I had a year ago, during investigations to find the cause of the severe damage to my spinal accessory nerve. I had never seen the report and the neurologist at the time told me my spine was fine.
Well, turns out it is not fine! It looks like I have a fair bit of degeneration and craniocervical instability so now I don’t know whether my symptoms are caused by Eagle Syndrome or CCI.
I need to investigate more and decide what to do. In the meantime, this morning, I have looked up some cervical spine stability exercises and started on those. Hoping that may help me to start to feel a bit better whilst I wait for all the other stuff and more appointments etc.
Where abouts are you? I’m near Scarborough. Had phone appointment with Mr Hughes as he’s in London.
Best wishes,
Jacqui
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So frustrating that nobody discussed the MRI with you, a whole year gone by when you could’ve been trying the exercises & doing more research! 
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Hi
I’m in York.
That’s frustrating for you especially with being so close to your operation! I hope the exercises begin to work quickly for you and you get further appointments soon!
It seems like it’s a long process for everyone going through it!
I’m literally at the beginning of the journey with having had symptoms for a while but my GP not understanding what was going on. Eventually my dentist clocked a large boney lump near my tonsil then a referral straight to maxillofacial and found to have a large calcified stylohyoid ligament on my right side (approx 5cm) seen on a dental X-ray.
I’m hoping once I’ve heard from ENT I’ll know what other steps I need to take such as further testing and then possible operation!?
Did you go straight to Mr Hughes or were you signposted to someone else first for other bits first like additional tests?
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Yes it is really frustrating! I could have solved this puzzle so much earlier 
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Hurray for dentists!
We are lucky enough to have Bupa cover but I do have some exemptions so am waiting until mid February when those can be reassessed. It did mean that I was able to get an immediate referral to Mr Hughes though, once my dentist had spotted my calcified ligaments.
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Out of interest who assessed you for CCI? Hope you have some luck with your symptoms!
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Some of the doctors are fussy how they have scans done, so it might be best to hold fire until you get a referral to Mr Hughes…although with waiting times I doubt you’ll be offered scans very quickly anyway!
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Hi, if you suspect CCI then I suggest you only do exercises with oversight from Instability physio expert as doing wrong things can make it worse not better. If you are near Yorkshire then Anna Higo at Physiocure in Leeds would be closest to you. Take care. D
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