Hi everyone. I just joined this forum, but I’ve been in the ES Facebook group for quite some time now. I was initially introduced to ES after visiting a pain doctor for “TMJ” issues that weren’t responsive to any conservative treatment and didn’t fit typical TMJ symptoms. After describing my pain, my specialist felt my symptoms strongly aligned with those of ES and wanted to get a CT to check it out.
Unfortunately, with insurance being insurance, it took 4 months going back and forth to get approval. I got my scan last week, and the radiologist did not comment at all on my styloids, ligaments, or hyoid at all, and I’m waiting on a revised report. In the meantime, I thought some of ya’ll may have some thoughts or insight on the images, as well as my symptoms (there’s a few).
All symptoms are only on my right side:
-Ear pain/pulling sensation that goes down my neck
-Ear pressure
-Ear crackling and popping with no fluid in my ear
-Tinnitus (high pitch as well as humming that is in tune with my heartbeat)
-Pressure right under my mandible and behind mandible that worsens when opening my mouth (not the joint)
-Constant sensation of choking
-Palatal myoclonus that is triggered with and head and neck movement like swallowing, turning my head to the left, speaking, etc. The clicking sounds the PM makes is objectively audible.
-Pressure and pain under mandible and in neck worsens when turning my head to the left or looking up. The pain doesn’t feel muscular as much as it feels like it’s coming from inside my body.
These symptoms are extremely debilitating and present 24/7 unfortunately.
If anything strikes a chord that is eagles, Ernest, or hyoid related, please let me know! It’s been lonely and debilitating being a medical unicorn and being in so much pain and discomfort, as I know many of us have experienced. Thank you!
Welcome to our forum, @etheralcataclysms! I just upgraded your account so you can post images. Please try again. Our system is protective & doesn’t allow new members to post images until they’ve made a couple of posts on the public forum. This helps keep spammers at bay even though we do our best to screen our new members to make sure they’re legit.
Your symptoms are all those we see w/ ES including PM. That one isn’t as common, but we’ve had several members who had it, & it stopped after their styloid(s) was/were removed. There’s a great book called Connecting the Dots by Sherri Jonas whose son had terrible PM starting at a young age. It documents her journey to find the cause of his PM & other symptoms - which turned out to be ES. Sherri was former a moderator on this forum.
Other links that will be helpful for you are
There are many other such topics in our Newbies Guide. The link is under the General category on our home page.
I think there’s an overlap between ES & Ernest syndrome, so hard to rule out one over the other, hopefully the revised radiology report will shed light on that! The symptoms you mention could all be due to ES…I think those with hyoid bone syndrome have choking sensation too, but quite often clicking or catching sensations in the front of the neck & with swallowing…hopefully you’ll be able to see the hyoid bone on your CT too.
Thanks so much for your response, and upgrading my account! I’ll definitely buy the books you recommended. It’s super validating to read other people have experienced PM. I’ll add my images as well to the post!
Your styloids are definitely long, @etherealcataclysms. I’ve annotated both the left & the right in the images below. I can’t see the tip of your left one because your jaw blocks it in the images you posted, however, your right styloid has a bit of a hook at the end which could be what’s causing the PM problems though that can also simply be the result of the angles & length the styloids have grown. Getting your styloids removed would be your best chance at recovering from your symptoms. The doctors in your state who’ve been mentioned most often on our forum are Dr. Chan-Leveno, Dr. Donovan, Dr. Hayes & Dr. Hales. The problem several of our members have had w/ some of those doctors is that they look for specific symptoms in order to classify elongated styloid as causing ES. If those symptoms are absent, they deny that the styloids are causing a problem. You may need to get a couple of opinions. Using the magnifying glass image in the upper right of this page, you can search for each doctor by name to see what’s been said about them by our members.
Thanks for your response Wendy! I had a friend measure them and they were both almost 3.2mm. I’ve wondered about that hook myself. Another member mentioned it’s directly against my external carotid on my right side as well. I’ve read a few things about Chan and Hale in this forum, as well as the ES FB group and heard the same thing, specifically about them also being very tied to length. I’m waiting for referrals to Heworth, Hackman, and Annino!
@etherealcataclysms, @notyouravg makes a good point. The greater horns of your hyoid do look long i.e. they’re pretty close to your C-spine. Hyoid Bone Syndrome is worth looking into as well. We’ve had several members who’ve been diagnosed w/ that & some w/ both ES & HBS.
Dr. Cognetti in PA does HBS surgery. Dr. Karuna Dewan, used to be at Stanford Medical Ctr, in CA, but looks to now be practicing in Shreveport, LA. Dr. Chhetri at UCLA Medical Ctr. also does HBS Surgery.
@notyouravg@Isaiah_40_31 its funny uou mention this, a member in the ES FB group mentioned my hyoid did not fuse as a child like most people’s do. I can palpate mine and make it click. I’ve only tried it on my own once on purpose and it freaked me out. I’ll take a look through those posts!
Is it not normal to be able to move your own hyoid bone and it make a noise?
As I said, they join together and fuse eventually as you age, usually in late thirties.
Thought it’s not uncommon to have these three parts of the hyoid bone still separate over the course of the whole life.
I’m honestly surprised people these days don’t even google before making long-reaching conclusions and then using them as a base for unsubstantiated claims/diagnosis.
Clicking hyoid is not inevitably related to fused/unfused hyoid bone as otherwise every kid would have clicking hyoid/palate, and every adult won’t, or vice-versa.
I’ve just learned about HBS this week- thank you for the article. So my being able to move it and cause a clicking sound has nothing to do with it being fused or not fused, thank you, that clears things up.
While the science still debates what the source of clicking hyoid/soft palate is, at least some of the cases are due to the muscular tightening, both pushing the hyoid bone towards the cervical spine (e.g. tight fascia, tight platysma, various other muscles), or pulling it towards the spine (e.g. tight omohyoid muscle).
Some other cases are occasionally caused by calcified ligaments (incl. Eagle’s syndrome-related) immobilising the hyoid bone in a place prone to friction with surrounding structures.
The hyoid bone is the only bone freely floating in the body suspended only by soft tissue, and as long as that soft tissue isn’t calcified, or the calcification is removed, there are high chances of fixing the clicking using methodical physiotherapy.
As a note, looking down at the mobile phone is one of the curses of the 21st century as it induces neck muscle spasticity both anteriorly and posteriorly, leading to a myriad of soft tissue problems in the neck caused by the tighteness.
It’s absolutely normal. Don’t freak out. It becomes “not normal” when it starts clicking and getting stuck every time you swallow.
As it’s a free floating bone, under normal circumstances it moves quite as far as you push it, irritating various structures including certain cranial nerves. Touching/palpating the hyoid bone for many people is very unpleasant experience, sometimes even causing episode of syncope.
Thank you for your help here! Yes, I have a clicking soft palate (myoclonus) that is made worse with turning my head to the left (it originates somewhere farther down the larynx on the right, I believe it just translates into the higher soft palate as it has greatly effected my ear in the same side and Eustachian tube).
Swallowing and speaking triggers it as well, and it can also be seen in the outside of my mandible going from my ear lobe, down the side of my jaw, down my neck.
I’ve done a lot for my neck- acupuncture, dry needling, PT, et, but oddly enough, with your tech neck reference, stretching seems to get rid of some of the fullness depending on how I stretch it, but occasionally makes my ear feel worse and neck always feel more pressure no matter what way I stretch it. I’m always have a feeling of slight choking on my right side.
From my own experience, the deeper into the woods, the more trees.
I used to have mildly clicking hyoid bone, and it took a while to “retrain” the muscles until it was gone.
Saying that, I had had a bilateral Eagle’s syndrome surgery which resected some small muscles and ligaments holding the hyoid bone, so obviously anatomically things changed and I sometimes needed to manually “push” my hyoid bone slightly into the place while retraining the muscles to get the feeling how it moves.
Another thing, the hyoid bone is connected to the thyroid cartilage which also sometimes gets calcified causing a pile of other issues, as it starts more aggressively interfering with neck muscles like SCM, platysma and others, causing some problems.
As for the tech-neck, unfortunately I don’t even know what sort of advice I could give… Personally, I noticed that one of the worst things is to lie flat on my stomach with the body propped up by the elbows, hold the phone in my left hand and use my right hand to scroll/type/whatever. In my case it causes significant imbalance between the L and R sides everywhere from the neck to lev.scapula muscles to back muscles to rotator cuffs to lats to obliques. Obviously your experience might be different, but I suspect by 2030 we will have insane proportion of relatively young people, in their thirties/forties, suffering from twisted bodies, herniated discs, hunching and epidemic neck pain… Sounds like not that bright future
