Hi everyone. I have just been told that my constant throat clicking is due to hyoid bone elongation but that there is nothing that my ENT doesn’t want to operate and says that i just have to live with it. However the clicking has driven me to the point that i am currently in psych ward for self harm. Is there any hope from here? There are very few ENTs in Western Australia and i have just seen the one that was apparently experienced in this. Please help me.
Just a note to say so very sorry for your condition and lack of care. I am unfamiliar with the clicking, but do have an elongated hyoid on my symptomatic styloid side. The surgeon did not think my elongation was a problem, but I suspect it is … so that is a hard one and we will likely know one way or another after my styloid is removed.
Assuming the clicking is causing you pain leading to self harm?
So sorry that it has driven you to feeling that bad…unfortunately there aren’t that many doctors familiar with ES in Australia as you say, is it possible to have your scans sent to another doctor on our list & to get a phone consult? Hyoid bone surgery is a bit different from Eagles surgery, so it may be that the ENT you saw is used to operating from the skull base down, a different incision. It could be worth contacting the other Australian doctors on the list to see if anyone would do this surgery?
It’s no consolation but the situation in Canada is as bad, & members have had to fly to the US or UK for surgery…I guess that’s perhaps not an option for you?
I’m so sorry about your situation @F_t. I expect your self harming was the result of extreme frustration when you were told you’d just have to live with your symptoms. As @Jules mentioned, if traveling is an option, there are some more experienced ES surgeons in Sydney. It would at least be worthwhile contacting them to see if any of them do hyoid bone resection.
I’m truly sorry that your situation was basically dismissed as untreatable. That’s just not right!! I’ll
Pray you can find a doctor to help you.
Thank you everyone. I have been sent home with anxiety medication in the hope that it will help me live with it or may possibly relieve the symptoms. I can only hope. I am going to try physiotherapy, as I reached out to a local physio who treats unusual conditions, who is actually currently treating a patient with the same condition. What are the odds! I guess we should meet up over a cup of clicky tea! Other than that I will try and get a second opinion from Dr Gilksman/Dr Friedland to see if they can help me at all. Otherwise, it’s on the plane I go…
Yes, the pain and frustration is unbearable. My husband likens it to drip torture. The constant yet intermittent click upon swallowing, you don’t know when you’re next going to feel like someone is flicking you in the throat. It even wakes me up with a fright from my sleep. I’m at my wits end.
That sounds really horrible! I’m so sorry!!
That does sound torturous. Have you been able to get any scans? A CT scan would show if you have elongated Styloids and/or calcified ligaments.
I did a quick search on ‘click’, and I found a number of replies. Quite a bit out there on this and it looks like surgery can resolve it. Clearly, there is something wrong and could be calcification that goes from the styloid down to the hyoid and is causing the problem.
I’m not familiar with your options in Australia for treatment. Hopefully others will chime in. And when I have fresh eyes in the morning, I will have a look and see if there’s anything obviousI can point you towards.
There is hope ))).
CT scan only showed enlarged hyoid length. No calcification or elongation of styloids. The ENT says surgery can be done, but he doesn’t think it’s worth the risk and better that i just learn to live with it. That’s so easy to say when you aren’t living with it!
Did the doctor show you the CT scan or do you have it? If not, it would be worthwhile getting a copy and uploading it so you can look at it. You’ll see many of us have ‘normal’ radiological readings. Often the radiologist does not know what to look for or does not notate other potential issues.
There is free software, radiant viewer, you can download, and you can see a 3-D view of your structures. If that is possible for you to do and can upload some images here, let’s see if folks on the forum notice anything unusual besides your hyoid bone.
The ENT received a copy of the ct scan but not the report actually! He’s still chasing that one up. But he looked through the images and only noted the elongated hyoid bone, he said no calcification.
I am going to ask for a copy for myself, partly because I want to put it on here, and partly because I am a scientist and the images are COOL!
I’m so interested to see my 3D model!
Wonderful that you are a scientist )). That should help you get to the bottom of this.
Most of us have had to learn all about this and advocate for ourselves. I have put it down to having a lesser known issue and that it is likely this way for rare conditions. It is very disappointing when the clinicians seemingly don’t care. I have learned to cut my losses and move to the next one (specifically ones from here) who do know what I’m facing.
The hyoid bone is the only free floating bone in the body suspended by muscles and ligaments, so if the ligaments aren’t calcified or too short, it means it’s mostly muscles pushing the hyoid bone towards the spine. And muscles can be reshaped, though it’s a slow process after adolescence… So besides the surgical options, look into muscle relaxation in the neck/throat region.
Thank you for that, I hadn’t thought of it that way. I just thought it was all tight but didn’t think of how the tightness could push a different direction. I know that I don’t have eagle syndrome (pending second CT look by anyone willing on here!) but I have really received so much emotional support on this forum, from people who understand what I am going through, and I really really appreciate all your help. Thank you all.
You’re very welcome here & glad that you’ve found the site helpful
As requested Leah! I had so much fun playing with the software, maybe it’s time for me to pivot into radiology! I can see that i have big fat styloid processes but not elongated. No clear evidence of calcification of stylohyoid ligament, but apparent elongation of the hyoid bone. My left side is giving me trouble and i feel that it could be the angle of hyoid bone there. Also, could thick styloids be causing my ear pain, jaw pain, tinnitus etc??
It seems that the 3D images have been made from the view with thick slices, any chance to render them from the axial view (assuming the axial has thinnest slices)?
Also I’d suggest to try Radiant Viewer software, it gives quite a nice quality images with default settings and allows extremely easy cutting around structures using the “knife” tool.
But even from these ones it seems two things might apply for your case: one, your styloid processes are quite thick. But also, your hyoid bone seems to be sitting a bit too high, possibly indicating a lot of tense muscles.
Just my 2ct…
Sorry, my bad. Higher quality images uploaded now.
There seems to be some asymmetry on the left hand side, but where this is problematic or not is a different question. Thank you for the link to the 3d rendering, such a useful tool! I shall be armed with these images when i go to the physio to see if she can help me out, and also to show my second opinion ENT if i cannot get a resolution with other therapies.