Not too long to wait, by UK standards! I’m glad that your ENT is supportive…thinking of you and hope it settles down in the mean time 
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Hi @Skatkat - my styloids are 39 and 42 respectively and JH told me that unlikely to be ES as pain was predominantly on one side (what!!!??). Instead he pushed me to the spinal opinion route and after a year of waiting told I likely DO have ES as well as c spine inflammation so now I’ve been referred again to a neurosurgeon and the wait goes on ……. I don’t think JH wants anything other 100% certainty.
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@Adele007 - My styloids caused very different symptoms on each side & neither of mine were broken. That’s just to say even when they are solid, if one side is poking different nerves than the other the symptoms can be very different on each side. Also, I could feel my left styloid under my jaw but not my right one. I could feel it in the soft spot just behind my ear, at the bottom of my earlobe. Many people, even those w/ very long styloids can’t feel them externally, but some can.
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I don’t know if it’s worth getting a second opinion from my local ENT, he said at an appointment before I saw JH that it could be “hyoid bone syndrome” so he actually seemed quite knowledgeable on it. I don’t really have much faith in JH to be honest.
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Ditto! You could try Mr Axon but I’m starting to think that self referral is deemed less worthy than getting another consultant to refer you. In that case, you need one that knows a bit about ES and believes you! Not sure where you are in UK but Dorset is a no no.
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I’m not sure, but I don’t think Mr Axon does hyoid surgery, he’s more a skull base surgeon. If you were to look at seeing him privately, I’d certainly try & find that out first to save wasting money & time…
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I’m in Essex, I saw Dr Maheshwar at Springfield Hospital who mentioned HBS because he thought my symptoms fit with that but didn’t mention ES, although I was quite impressed he knew about HBS because my GP and anyone else I’d spoken to had no clue what it was. I could go back to see him again, I think I’d have to do it private and self pay though because everyone just thinks I’m crazy. There is so much disparity, I thought that the length of my styloids and the calcification would be a definite diagnosis. Will be interesting to see how @Adele007 gets on with JH, please let us know. I hope you get a better result.
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Oh thats not good 
I would of thought the scans are proof surely is it not? Did he tell you how long your styloid are?
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So yesterday i was eating and all of a sudden i was chewing on what felt like sand and my partner could actually hear it is this something to be alarmed about? Also has anybody had a feeling of everytime you swollow it feels like your oesophagus it blowing up like a balloon? And at the back of my throat it feels dragged down also if my styloid has broken off or changed positions could the surgeon be able to see it without a new scan i just dont want to go through surgery and only have done the one side because he couldn’t see anything on the left side anymore?
Wait and see what Mr Hughes says when you see him; I don’t think that he would do both sides at the same time, so you’d need 2 surgeries anyway. You could ask about the feelings you’re getting, that you’re concerned the styloid or ligament might have snapped, and ask for whichever side gives you the worst symptoms to be done first. I wouldn’t try and get a new scan for now, see if he needs you to have one or not, it’s extra expense and exposure to more radiation, so best not to have it if he doesn’t need it.
I know it’s hard not to worry when you’re getting new symptoms and they seem alarming to you, it’s just another week so hang in there
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This was my result…(JH, Cleveland Clinic)
Clinical Info: ? right eagles syndrome
Findings: The styloid process is 35mm on the right and 32mm on the left and shows discontinuous ossification. The tip lies 1.8cm from the mucosa of the oropharynx. Sporadic mild mucosal thickening at the maxillary antra and ethmoid air cells. No pathology seen elsewhere on the scan.
Conclusion: The styloid processes are within the normal range for length and show discontinuous ossification. .
They will definitely check your scan, I don’t think you’ll need another. I also get the dragging down feeling, I don’t feel like I can get mine to come up. I also get a sort of grinding noise, a bit like bone on bone from the front/throat area and lots of clicking at the skull base at the back but CCI has been ruled out from scans I had at Medserena. .
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Just ridiculous that they class 35mm as within normal length! Especially if you’re not that tall. 
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I agree, I pushed to go to JH as well thinking he would be the best person to advise me on this but then I’ve got this answer and that’s what’s making it harder to go through my insurance because I’ve now got this result that says it’s totally normal. I’m still on the waiting list for NHS but it’s been over a year now
@Skatkat - I’m so sorry that the radiologist who read your scan is uneducated about what is considered normal when it comes to styloid lengths. It’s true that the size of a person isn’t considered when styloids are measured, & there’s little understanding that ES symptoms can be severe in a diminutive person who’s styloids aren’t terribly elongated due to the person’s small size just as they are for very long styloids in a very tall person.
Is it possible in the UK to get your scan re-read by another radiologist? Even better would be to get the opinion without him/her being biased by the report from the first one.
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I’m going to try to get a second opinion on it with the local ENT, it will still have to be NHS though at the moment. I’m hoping in a few months if I haven’t had a second opinion I’ll have the funds to pay private again.
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Hi jules
I managed to let a last minute cancellation for mr hughes, his secretary is very efficient, and with the help of my parnter emailing her to see if there was any cancellations. My consultation went well, dr hughes he seems very knowledgeable and has done quite a few of ES surgery’s so i think im in good hands:pray: my surgery date is the 28th of February which seens like quite a long time away as im pretty much in bed most of the time, but im hoping time will go quickly 
he said he’ll do my right side first as that the side which is all the way down to my hyoid bone and connected to it was so im finding it hard to talk,eat, and even drinking starts it off it horrible, im now getting a lot of calcification coming out from my mouth so im spiting it out alot 
so i definitely think this side would give me a little bit of my life back hopefully then he said at a later date he would do the other one and feels theres no need to get another scan even though i said its either changed positions or broken off but i know that one is giving me calcification too, so its just the waiting game now and hopefully it doesnt get any longer or break off in the mean time im trying to be super careful and not moving my head as im scared something will happen 
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Oh forgot to say thank you jules for the questions to ask dr hughes they came in very handy😊 also iv asked him when hes doing the surgery to have a look at my hyoid bone because i think its moved.
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That’s brilliant getting a cancellation! So pleased for you, and hopefully the next 4 weeks will go quickly…Read up when you can about what to expect after surgery and how to prepare, there’s a surgery shopping list one of our members put together, here’s a link:
Surgery shopping list - General - Living with Eagle
And info here:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Will make a note of your surgery date, & will pray that all goes well 
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