Hello all! I’m so glad I found this website, lot’s of knowledge here.
I’ll try to keep this brief.
I’m at the very beginning of this journey as I only learned of this syndrome 3 days ago when a coworker took a panorex on me and asked if I had it. I work in Dental education and embarrassing enough I didn’t know what she was talking about. Luckily she had recently attended a CE course that educated about ES and TMJD.
I have typical symptoms, 10 years ago went to ER for stroke like symptoms, CT negative although it was without contrast. Follow up with Neuro and ENT, and Laryngologist. MRI/MRA all negative, no detection of stroke, compression, MS ruled out. My symptoms started 10 years prior (stabbing cheek pain that would drop me) to that and being in Dental it was treated as Trigeminal Neuralgia which is a hell in itself.
I saw a chiro and he found reverse curvature of the cervical spine so pinched nerves were suspected. Lots of physical therapy and some improvement.
The weird thing is all my throat issues I related to having autoimmune thyroid disease, and it affects my ears, constant sore throat, raspy voice, I always need liquid when I eat…and TMJ bilaterally although my left side is by far the worst. I’m pretty for sure I had a mini stroke when I was 30 so 20 years ago but doctors didn’t take it seriously and said it was a panic attack (I had never had a panic attack before).
I’ve been doing a lot of research and so many things make sense with ES, especially head position is tricky, if i turn my head too quick I feel very light headed, I can’t lay on my back and looking up and doing chin tucks is not the favorite.
For the most part I do pretty ok but when it hits I’m non functional. Luckily I have great support at home. I don’t love going to the doctors. I was recently encouraged to go in again as my autoimmune can really flare and when it flares so does the TN or ES whatever I have and vice vs. So it can affect me heavily in a flare for a month or so which I’m currently in but coming out of.
I saw my Dentist yesterday, he wasn’t familiar with ES but saw some other concerning things and referred me to an oral surgeon, I believe they have cone beam there but not a CT machine.
My next door neighbor and friend is an ENT, he says he diagnoses ES but doesn’t treat it. I have yet to have a sit down with him.
My questions, where do I start? Am I right in assuming I’ll need to see an ENT and have CT with contrast? Wish me luck! I’ll try to attach my panorex here so you can all see and give me your best advice.
This is a great start to your journey! How timely that your co-worker had just taken a course where s(he) learned about ES & possibly recognized that some of your symptoms might be caused by your styloids!
We’ve been seeing cervical spine misalignment i.e. loss of the lordotic curve either via straightening or reverse cervical curve, being causative for ES symptom exacerbation. I’m glad you’ve been to PT & seen some improvement in your symptoms that were specific to cervical spine curve correction.
That you’ve noted head position can stimulate some symptoms is important as getting your CT scan in a neutral head position as well as in the position(s) that make symptoms worse will give the best diagnostic information. The doctor who refers you for your CT scan must request the head position(s) outside of the neutral or your CT will only be done in a neutral position.
We have found that chin tucks & ES are not a good combination. Perhaps once the styloids are shortened, they can be beneficial but prior to surgery they seem more detrimental. There are other ways to strengthen the neck muscles that aren’t as “invasive” as chin tucks.
Many of our members (including me) have thyroid disease, cysts or nodules. We don’t know if it’s coincidence or if there is a connections w/ ES. Your ears, sore throat raspy voice & lack of saliva are all symptoms connected to the cranial nerves that can be irritated by elongated styloids & which have been noted on this forum. Your mini stroke 20 yrs ago & ongoing similar symptoms possibly point to your internal carotid artery(ies) being irritated by your styloid(s) thus the reason head position during CT can be important. You would need a CT w/ contrast.
Starting w/ your next door neighbor is optimal since he is familiar w/ ES. Depending on what he says, we can guide you to a doctor who is experienced w/ ES surgery.
I’ve annotated your panoramic x-ray to show you where your styloids are. When they are normal length, they don’t usually show up in a pano x-ray or CBCT.
Thank you so much for all your feedback. It’s good to feel validated and like I’m moving in the right direction for an accurate diagnosis. I was able to requests x-rays from a previous office and found even in 2011 my styloids are elongated. I have to try not to feel frustration as this should have been looked at so many years ago.
Thanks for the recommendations. I will keep you posted.!
@Zilla - I like most things Studio Ghibli Some of Myazaki’s movies are a little more violent than I like, but there are also a lot that I enjoy, own & have watched multiple times. I actually read Howl’s Moving Castle & Castle in the Air (sequel) after watching Myazaki’s version. The movie is a pretty significant departure from Diana Wynn Jones original story but still lots of fun!
I’m glad that you’re looking into ES, it does sound as if you could have Vascular ES perhaps given that you’re getting symptoms in a certain head positions, it was a good spot by a colleague! I just wanted to pick up on your post’s title - ES or TN? ; I would say it can be both, as ES causes trigeminal neuralgia. Autoimmune conditions do seem to be almost common alongside ES, whether there’s a connection or not who knows, but maybe the inflammation caused by the styloids triggers something
If you’re going to see an ENT to get a CT & hopefully a diagnosis, it would be a good idea to ring ahead to check that they would at least diagnose it (unless you can see your neighbour?!), as many doctors aren’t familiar with ES or are sceptical about it. So good luck!
Oh interesting that ES can trigger TN. That’s something to think about. I also have a lot of eye issues and ear problems seem to exacerbate in the summer when I swim, I found side breathing sets things off. I use the Epley maneuver and treatment for swimmer’s ear and it seems to help some what with the dizziness and ear noise and pressure. I can’t use ear plugs as the noises inside my head become louder than any outside noise I’m trying to block.
Weird question but does anyone have increase in yawning? I can’t seem to get enough yawns and they only bring fleeting relief and I’ll have to yawn again, (of course without opening wide). I think it’s more related to ear pressure than anything else as my ears will pop and clear and then they cycle repeats.
I’m in Utah and very few ES doctors came up on a google search, and even then other than at the university, I’m not sure who actually treats this. I’m hoping to have a causal discussion with my neighbor soon and see what direction he recommends.
I was referred to an Oral Surgeon for a unrelated reason but I tend to ask him as well.
@Zilla - ES can trigger a number of neuralgias because of the cranial nerves it can impact in the neck. TN is just one. Your eye issues & ear problems that exacerbate w/ a change in head position are potentially indicative of vascular compression occurring when your head is in the position that causes them to increase.
What you noted about excessive yawning - that it may be your body’s way of clearing your ears - is a good observation. Ear pressure is controlled by 4 cranial nerves - the TN, Facial, Glossopharyngeal, & Vagus. All of these are prone to irritation by elongated styloids/calcified stylohyoid ligaments. It may be that yawning temporarily takes pressure off whichever of the nerves are affecting your inner ear pressure & thus relieves the pressure.
Utah is one of the states for which we have no ES doctors listed. We had one, but he stopped doing ES surgeries for some reason unknown to us & one other who did surgery for Hyoid Bone Syndrome for one of our members but doesn’t do ES surgeries. We’d love to get the names of some docs in your state who take care of ES but have to rely on our members to provide those for us.
Good idea to talk to the oral surgeon about ES! If you haven’t read over this post made by @Jules, you should prior to consulting with anyone. It contains a list of questions to ask when interviewing a doctor about ES surgery which will be helpful for you. ES Information- Treatment: Surgery
Some of Myazaki’s movies are a little more violent than I like, but there are also a lot that I enjoy, own & have watched multiple times. I actually read Howl’s Moving Castle & Castle in the Air (sequel) after watching Myazaki’s version. The movie is a pretty significant departure from Diana Wynn Jones original story but still lots of fun!