Oh thank God! I have been thinking and praying for you…what a relief! Is Mr Axon working in conjunction with Dr. Hughes? Was Mr. Axon able to look at the CT you brought and is he supportive of the ultrasound? I am so grateful you have a stronger thread of hope to hold onto, keep fighting the good fight, there is a brighter light shining indeed! Peace
Thank you. No, Mr Axon will do his own thing, I will continue with another CT scan for him and the ultrasound, determined to get this out of my throat! Mr Axon talked about the link with vagus nerve and vascular problems, he really does understand ES but I’m not going to jump into surgery until someone clarifies which bone it is! Appreciate your support so much
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Solid plan - AwEsOmE !!! So happy to hear he spoke of the other and equally (if not more so) important nerves/veins. Ride the wave and keep asking good questions. Be well 
What a relief for you, Julia! So glad Mr. Axon came through for you. I thought he would. He has a lot of experience & is gaining more each week! You’re on your way to a solid diagnosis & the next steps toward healing & recovery! WHEEEE!
Thank you, fingers crossed, one of them will help me. Got to just keep getting going for a final diagnosis!
Can my hyoid bone be the culprit? I have tenderness and swelling in my neck at the hyoid level. Looking at hyoid syndrome, I have the same symptoms that overlap with ES. Whenever I bend my head down, I get a tightening in the front of my neck and side of my neck which can feel suffocating, like something is being trapped at the hyoid bone and also up in the mouth. The stylohyoid pops / catches on something when I turn my head, but seemingly no calcification has been noted, yet. Also pain radiates to my chest, shoulder and arm which seems more hyoid than styloid…it’s s mistery.
Can consultants differentiate which bone it is before operating?
Anyone else had an ultrasound to diagnose ES?
is it normal to have all these symptoms but for scans to show nothing untoward?
Hi Julia,
The hyoid bone could be the culprit, but the symptoms you describe do also sound like those caused by calcified stylohyoid ligametns. The fact that you’re getting the “popping/catching” sensation w/ head turn also possibly points to a calcified s-h ligament(s) in my opinion (not a doctor here). Do you get popping or clicking in your throat/neck when you swallow or only w/ head turning?
Pain radiating into the arm/shoulder & even possibly the chest can be caused by the accessory nerve being impinged or irritated. Vagus nerve is also a possible culprit for chest sensations though it is more likely to cause heart palpitations & blood pressure issues in that area.
Absolutely the consultants you’re seeing WILL be very clear about which bone or calcified ligament(s) are the trouble makers before subjecting you to surgery. You will be well informed, too.
Ultrasounds are not usually effective in diagnosing ES thus I would put off the ultrasound until after you’ve had the scan(s) Mr. Axon recommends & know the results of those. If it still seems prudent to have the ultrasound after hearing what Mr. Axon has to say then go ahead with it.
Yes, they’ll be able to see the hyoid bone & whether it’s that , elongated styloids or calcified ligaments that are causing symptoms. Mr Axon is a skull base surgeon/ Otolaryngologist so the hyoid bone wouldn’t be his specility; I would guess if it does turn out to be that he’d have someone in mind to refer you too. I would be pretty confident that he wouldn’t do surgery unless it was necessary either. Are you having the scan on the NHS? Might be a bit of a wait!
I think Isaiah’s answered your other questions pretty comprehensively, hope this is all helpful!
But very pleased for you that tge appt went well, he listened to you & could feel it!
As far as the ultrasound, depends on what kind you are having as I questioned before.
I had an intravenous (IV) ultrasound (US), where they insert a catheter with the tiny US into the vein in your groin and feed it up into your internal jugular vein at your neck (this was also done with contrast). My ENT ordered this after my CT angiogram was positive for both elongated styloids and internal jugular compression. It was this IV US that was evidence enough to offer surgery (not the elongated styloids) in my ET’s opinion. I have not heard of an external US (placed on the outside surface of the neck) used as a diagnostic tool for ES or the vascular implications.
Hope this is helpful, so very hopeful for you!!!
Some members have had a doppler ultrasound for vascular ES, it can show reduced blood flow, but this needs to be done in the position where you get the symptoms.
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Thanks Jules, very interesting. I am not a sonographer, however, seeing as Doppler ultrasound can not go through bone the elongated styloid would very likely impede the test at the most constricted part of the vein/artery, but might pick up mild blood flow restrictions below if you had enough space to get a reading above for comparison. Think I would opt for the IVUS, albeit more invasive, if an option. Interesting thought to chew on…
Hello
It was literally a probe into my tonsil area and low and behold, a styloid process. In the right place, sort of, and right length. Looks like tonsil fossa stretching has ignited ES for me. I like to be different!
Still hopeful it will be taken out to save my throat. I will let you know!
Julia
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Hello
I’m going for ultrasound today so I will let you know. I think it is merely to clarify whether what is felt in the throat is bone or scar tissue, (I absolutely know it is bone) and to try and find out which bone it is. Dr Hughes said CT scan looked normal with styloids the right length same length so he is forced to double check by using ultrasound. I think he doesn’t feel satisfied with the CT report. No mention of calcification or hyoid at all. I get popping when I turn the head, not all the time, and only since the tonsil tissue stretched and all my symptoms really kicked in. All quite unsettling really, I had hoped it would be more clear. I am worried I caused damage to tonsil area tissue with throat spray and decongestant spray, one of which gave a burning sensation when it came down the back of my nose, into the tonsil fossa, and that the tissue has stretched to reveal a bone, rather than bone being elongated. The tonsil area tissue is white and very very thin and excruciatingly painful when the bone rubs. I don’t really know what to think but just got to hope one of them will take it out even if it is ‘normal’.
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Hi Jules,
Do you or anyone know whether Mr Axon operates privately? I forgot to ask that question. I now know it is the styloid, which is a little thick and coming in at a stupid angle, for whatever reason. Mr Axon wants me to have head and neck CT venogram. Is that the same as a CT with contrast (which I already had done and has been uploaded to his files to view). I don’t really want to go all the way to Cambridge for yet another expensive scan but I’m in such incredible agony I would just about do anything to make progress. I don’t know why the bone is where it is, but it sure is feeling like it will break through soon. My throat tissue is so so sore, I wonder if it will recover if and when the bone goes…
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Hi Julia,
I’ll let Jules answer the questions you asked her, but want to assure you that our bodies are built to thrive & survive & thus they’re good at healing themselves. I feel confident that once your styloid is removed your throat will heal up. It may take some time for the pain & other symptoms to go, but I do expect they will.
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Yes Mr Axon does do the op privately, I know he does it through Spire, at the Lee hospital Cambridge…I actually had my 1st surgery done there rather than at Addenbrooks because I’d waited so long & they were trying to get the lists down…sadly not the 2nd time!
As for the CT, I asked if I could have it done at my local hospital but he wanted it done at Addenbrooks as they obviously know how he wants it done. A CT venogram is done with contrast, so technically the same, but they make sure that it’s timed right to show the veins, as opposed to an angiogram which shows the arteries I believe. You could try ringing his secretary & querying whether you need it doing again or if he can see what he needs with the one you’ve already had, not just the cost but the radiation too, but I have a feeling he’ll still want it done his way. My CT pics were different to alot on here- not sideways on shots of the head & neck but from the top of the head down.
Hi Jules
Thank you for that. I think that’s what I had done in London, it was a slow release contrast, but I will see if his secretary can find out for me. Unfortunately my styloid is normal length I don’t know if either consultant is going to offer to take it out or if they will believe it is causing so much pain. I’m a medical mystery!
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Julia,
Please don’t let the length of the styloids deter you from keeping up the search…just need to find the right person who loves a mystery!!! Your pain is real, you are real and a great gift. Good luck with Mr. Axon 
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Hi Julia. I have very similar symptoms to yours for the last three years. After finding out about Eagle syndrome I was sure that i had it because my symptoms were so similar. But I just recently found out that it’s actually my hyoid bone that’s causing the problem. It’s pressing on my carotid, cranial nerves and rubbing on my spine. The Dr couldn’t see it on the scan but he can feel it by palpation, and I had two doctors confirmed this. My neck is thin and my hyoid bone is easy to palpate, my pain is exactly at the end of the hyoid bone , and it took me three years to realize that! But my symptoms are very similar to yours, pain in the Carotid area that spreads to my face, head , deep in neck, throat, jaw, shoulder and even stomach. The pain is different each day, it’s like traveling pain. I also have popping sounds in the neck and feel like I’m being strangled at times. Absolutely miserable. And I also get weird burps, the doctor thinks the stomach and burps are related to the vagus nerve. So have the doctor palpate your hyoid bone, it doesn’t always show up on the scan. I’m having surgery in 2 weeks to remove part of the bone, I can’t wait but also nervous! I hope you get an answer soon!
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Hope you’re surgery goes well, glad that hopefully you’ve got to the bottom of what’s causing your symptoms!
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I’d ask about the angle & width of styloids from the CT pics, it’s not always the length of them which can cause problems. And whether there’s any compression of the blood vessels, hopefully the contrast CT will show that .