@Rosie - FINALLY!! I’m so glad you’ve gotten validation that you are right about the causes of your symptoms!! HOORAY!! Thank you for the update. Now to wait for a surgery date. I know that can take a while on the NHS. Hopefully not too terribly long though.
Thank you @Isaiah_40_31 yes I am relieved that my symptoms were not dismissed again. Mr Axon didn’t say an operation would be done under NHS but he said he was happy to review me again then to see how things were going. It also gives me time to take it all in as its a big operation involving C1. I also mentioned the hyoid clicking when I swallow but we didn’t discuss this further. This is a fairly new symptom I have. I know Mr Axon doesn’t deal with this anyway, but I think I need to get his opinion on that as @TML mentioned my hyoid may be compressing something. To be honest I expect anything from 6 - 12 month waiting for first NHS appointment anyway.
I did ask if the IJV compression would be causing the pain in my neck but he didn’t so. Although I have read up that it can. He also asked if I get shoulder pain, which I do, especially when my neck is inflamed. Any views on the IJV causing neck pain? Thanks again everyone who has helped me understand my symptoms recently this has been much appreciated 
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I’m glad that he listened & will consider surgery. ES causes neck pain anyway, so it’s not easy to say whether it’s the styloid or IJV- I used to get pain quite deep in my neck, under my jaw & just off centre of my trachea (& never had the stabbing pain, trouble swallowing, feeling of a lump in the throat which are classic symptoms) , so it may well be the removing your styloid will help, but doctors are cautious not to promise too much! I’m glad that you feel validated, & good that you’re okay to wait for a bit & think about the best way forward. 
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Hi all, I have been contacted today by the UCLH NHS headache clinic in London. I had an appointment with them July next year, but after forwarding Mr Axon’s letter to them, it has now been brought forward to next month, which is brilliant. I have started to get ear pain on the right aswell which I have never had before. Although I am aware that I do have some right IJV compression by my C1. I am second guessing everything at the moment and wondering about CCI, which I know does have similar symptoms to IJV compression. Mr Axon mentioned about 85% chance that surgery should cure most of my symptoms and the other 15% is mostly due to misdiagnosis. I am hoping the headache clinic may have more detail regarding CCI as I did have a car accident 8 years ago. Its a hard decision to make going through major surgery for C1 and styloid removal and I want to be as informed as I can.
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What great news that Mr. Axon’s letter made that much difference in expediting your appointment w/ the headache clinic! I’m really glad you can now pursue getting answers to your questions about CCI! I had a car accident with significant whiplash injury when I was in my early 20s but didn’t end up w/ CCI, however, I suspect it initiated my styloid/stylohyoid ligament elongation.
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Yes @Isaiah_40_31 that was my thinking that the car accident caused my styloid to grow on the left as my right arm was badly fractured and I had to use my left arm for everything, to push myself up from a chair, to turn over in bed & to lift grocery bags etc. I was very aware that this pulled on my left neck muscles. Reading more into CCI it talks alot about the C1 and C2 rotating against one another and causing IJV compression, so it seems very much interlinked with ES. I shall try and educate myself further 
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@Rosie , if you’re concerned about CCI, @PatientD gave some info for a quick self assessment which might be helpful:
‘On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
Great news that your appointment has been brought forward because of your consultation with Mr Axon; I hope that they can suggest some help for you. If you’re getting ear pain it could be nerves being irritated by the styloids, I’m sorry I can’t remember if you’ve had nerve pain meds before, but if not these might help?
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Wow @Jules that’s great advice checking for CCI. I’ve done all this, with the help of Mum and a Fox Red Lab! and everything looks fairly level to me, thank you for that. Its been a rough day with ear, skull & neck pain today. Also shoulder pain and swelling above my clavicle again. GP called this evening and will see him tomorrow. I have tried all the nerve meds and nothing has given me any relief unfortunately.
Another thing that has helped some of our members when nerve pain meds didn’t is a muscle relaxer such as Flexeril. It would be worth asking about.
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Thank you @Isaiah_40_31 I have just checked that drug and it doesn’t look like cycobenzaprines are prescribed here in UK, but I shall ask about other muscle relaxants. Makes sense if muscles are tight in neck due to pain, then it may cause reduced space under clavicle causing the swelling. Love this forum thank you!
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Poor you Rosie, but I’m glad that the CCI info was helpful, it was from PatientD initially though… Nice to have some assistance to help with the testing 
Baclofen is another muscle relaxant medication that others have tried, & that is available on the NHS… I hope your GP is helpful later
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Thank you @Jules unfortunately GP wasn’t keen to give me any muscle relaxants this morning, but did say if swelling persists then I can go back again. I think he was going down the Valium or Diazepam line which he wasn’t keen to prescribe me, so I will mention Baclofen if I need to go back.
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You might be happier on those but probably not a good idea 
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There’s been a lot of discussions recently regarding the Hyoid especially in regards to Carotid compression, so I thought I would double check my CT scan. I believe I previously uploaded an image, which was part of my thyroid cartilage, due to the angle of the hyoid. So I have uploaded a new image that I think is correct now. Interestingly it does look like the left greater horn tip may come into contact with my ECA, although my 3D appears to show a small gap. I have intermittent throat pain, clicking and swallowing difficulties.
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I think it’s hard to tell exactly with the 3D sagittal view , but when we looked before your hyoid cornu did look pretty long, hopefully @TML can have a look at the new image…the thyroid cartilage could be contributing to the clicking too potentially as @Isaiah_40_31 had labelled an extra bit of calcification below your hyoid in one of the images you posted earlier?
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Yes I just keep questioning my symptoms, I’ve always felt there is something going on with my throat, aswell as my neck pain and headaches etc from my Styloid. Lots to discuss with Mr Axon when I eventually get an appointment under the NHS. Chased his secretary yesterday and I have been triaged as non urgent, therefore she said it would be at least 9 months for my first appointment 
. I’m very sad about that. Just waiting on the letter to confirm.
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Good old NHS, a long wait! Because he’s a skull base surgeon, he wouldn’t be doing any surgery on your hyoid though I don’t think…we don’t know of anyone (other than Mr Hughes) who’s willing to do hyoid surgery. It might be worth doing some searching about that in the mean time? I did look a while back as one of our members was trying to get surgery for that- I can send you a PM about that if you want.
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Yes please @Jules if you could. I wonder if the pressure is off the stylohyoid ligament then it may help 
@Rosie I think you have everything labeled correctly. The thyroid cartilage you have labelled I believe is calcified lateral thyrohyoid ligament. There is some literature on case studies of it compressing carotids.
It’s becoming more and more apparent to me that ES and hyoid bone syndrome commonly presents together. I found this research article where 17 patients with hyoid bone syndrome were getting surgery on their greater horns, and 10 of the 17 had elongated styloids and 7 of the 17 had calcification of stylohyoid ligament. And so it becomes hard to differentiate where the pain and other vascular symptoms are coming from. Although there are many people who get better after styloidectomy there are many who don’t and it makes me wonder how many of these individuals also have hyoid issues.
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Thanks for all the data @TML I noticed there was a thyrohyoid ligament when researching and that makes sense that it could be calcified as well as my stylohyoid ligament, oh the joys. Its a minefield! As @Jules mentioned Mr Axon is a skull based surgeon so I may need to look into it further. I have 9 months!
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