Hi everyone,
I’m glad this place exists as I’ve felt very much in the dark with this for a long time.
I’m a 24 year old male from the U.K.
I suffer very badly with OCD and health anxiety, and as you can imagine, I’ve gone through the ringer thinking this condition was some something life threatening. The non-descript, ambiguous sort of pain has driven me slightly mad over the years into worrying for months on end about it being related to many different types of cancers. But alas, here I am five or so years later (maybe more, I can’t quite remember when it all started) with no increase in symptom severity and nothing changing.
My problem started with vague neck pain. It’s not present at rest, but when I do a chin tucking motion I get a stabbing pain around the angle of my jaw on the left that seems to radiate around my ear, too (it’s incredibly difficult to pinpoint exactly where it is). I also get it if I tilt my head to the left.
The pain only happens on the left side (although very occasionally, the muscular balance seems to shift and I can feel a similar thing while doing the chin tuck happen to the right side). There was also often an occasional feeling like something was stuck in my throat — or not so much stuck, but that there was a tickling, niggling feeling around my tonsil area.
In addition, I have some occipital pain when doing the movement — very similar to the pain if you crick your neck (but I also have some muscle imbalance from poor posture on my left side that affects my upper back and traps, so perhaps that’s to do with that).
I also have very mild tinnitus on my left side. I don’t even notice it unless I think about it, but it’s there, very faint and continuous— high pitched and not pulsatile. It gets louder when I do the chin tuck movement.
A few years ago I was prodding around my neck to try and find something that was responsible for the pain. At first I thought it was to do with tight muscles (which may still be a factor), because I noticed that applying pressure to my masseter, pterygoid, and sternocleidomastoid muscles seemed to increase the pains temporarily but ease the pain I had when doing a chin tuck after doing so. I also discovered that if I press on the left digastric muscle belly right at the front of the chin, the pain I get when doing the chin tuck is somewhat replicated.
Last year, I discovered another piece to the puzzle. When feeling with my thumb underneath my neck — just a bit higher than the angle of my jaw and deep in — there’s a little pea sized bony protrusion. Pressing on it causes the tinnitus to get louder, and also causes the vague neck pain to an extent.
I’d already come across egales syndrome at this point, and upon discovering that the styloids can be felt in the tonsil area if elongated, I checked this out for myself.
Low and behold, I could feel mine: boney spikes around the tonsils on both sides, but that only produced pain on the left side when I touched it. This was clearly the same thing I’d been feeling under my neck exteriorly.
I haven’t had any kind of scan yet, but it seems indisputable at this point that I have ES. Considering you’re not meant to be able to feel the styloids and I can, and that they also cause these pains and symptoms I’ve been having for years when pressed, I don’t see how it can be anything else.
The big thing on my mind right now is what to do about it, if anything. As I said, the pain only happens when I gyrate my head into a position it’s never usually in naturally, so I’m not in daily pain with it. In fact, there was a whole year when I forgot I had it, and at that time, when I did the chin tuck again, the pain was barely there. I was clearly aggravating it before when I was doing the motion a lot to try and deduce what was causing it and where the pain was, and making everything worse than it actually was.
From what I can tell from info online, the condition is mostly self limiting. I certainly haven’t found it to have gotten any worse over the five or so years I’ve noticed the pain, and if I just leave it alone, it actually gets a lot better.
I’ve seen that unless symptoms are severe, it’s often just left alone (at least, that’s what a lot of the scientific papers I’ve read have concluded).
One thing that does concern me, however, is the fact that I’m getting some chin surgery done — a genioplasty to move the front of my chin bone forward, which, of course, does stretch the digastric muscles a bit (the end of the chin bone is basically cut a couple of cm into the jaw and slid forward a little). It’s only going to move my chin 3-4mm vertically and around 15mm horizontally, but as I said above, the digastric muscle seems involved at least to some extent in the ES issue, considering that pressing on it just beneath my chin near where it attaches reproduces some of the chin-tuck-neck-pain. Having said this, I can jut my jaw out further than the extent of the genioplasty without problem, which is stretching those same muscles, and I don’t get any weird symptoms.
Given the fact that these symptoms don’t really affect my everyday life, I’d likely be a candidate for just doing nothing about the ES, but could there be some complication if I have chin surgery?
I’ve read a little about the difference between vascular and normal ES, and I’m unsure which I have. I don’t have any headaches, vertigo, dizziness, blackouts, or pulsatile tinnitus, but I’m worried that if I do have vascular, the stretch and change of position of my jaw muscles might affect the condition. I had a vision of my dying on the operating table because of some unforeseen arterial compression or something!
But then the alternative is to go down what will most likely be (from what I can tell from reading posts from other users here) a very, very long process of getting the ES investigated first before the chin surgery. Particularly with me being in the U.K.
Given its relative obscurity, it’s unlikely my GP or the surgeon doing my chin surgery will have ever heard of the condition. My surgeon has ordered an X-ray so he can make measurements for my chin surgery (a front on and a lateral), so perhaps the styloids will show up on there (though I know often they don’t and that a CT is the only was to tell).
I was hoping I could get my chin surgery done and then, if it’s necessary, see if I can get diagnosed with ES, but the other way around would mean waiting an immense amount of time for my genioplasty, and I really need that doing (it’s for cosmetic reasons but I’ve been waiting so long to get it done already).
I’m completely in the dark of whether there would or wouldn’t be potential issues, it’s just something I’ve conceptualised in my own ignorance — that having tight or calcified muscles or ligaments might present a fatal problem if I have vascular ES and they’re disturbed in any way, even if slightly.
What do you think I should do? Do you think there would be any risks have the chin surgery done without investigating this first? (As in dying on the table from some arterial compression problem during my chin surgery). It’s all very confusing, and you can’t just go and ask a doctor because they don’t seem to know about the condition.
Many thanks!