Hi all, thanks for accepting me into this group, so nice I can ask questions here, a lot of uncertainty. I don’t have a diagnosis but I hope to find out whether I have ES or not. For a few years now I have had throat and ear pains (also blurred vision, burning sore mouth, dizziness, tinnitus, sore jaws and more…) that no doctor can really explain. It comes and goes, sometimes worse than others. My neurologist says it could be glossopharyngeal neuralgia and also trigeminal neuralgia even though it cannot be seen on the MRI scan.
I recognize many of my complaints in Eagle Syndrome.
I went to the dentist last year because of a toothache and he took a photo (so unfortunately not very recent). Is elongation of the styloid process visible here, what do you think…? Can I possibly find photos here to compare? Of course you are not doctors, but I would like to hear if you think there is a possibility that it is Eagle Syndrome.
Thank you in advance and grateful that this is possible!
Kind regards,
Joyce
Hi & welcome!
Your styloids show up really well in your x-ray, I’m sorry that I’m not good with technology or I would label them for you! Your right styloid (left side of the picture) looks quite jointed- that’s commonly seen when the stylo-hyoid ligament calcifies. It’s longer than average and is angled inwards, so that could well be enough to cause symptoms. Your left styloid, on the right in the image, is also long and angled, & it has quite a kink in it so that could well be irritating nerves…It looks like it has ‘joints’ in it too, so possible the ligament is calcified both sides.
Certainly looking at the images it’s worth pursuing ES as a possible diagnosis, so getting a CT done will be good. Is the neurologist aware of ES do you know? If not we suggest that you get a print out of one or two research papers which show that TN and GPN can be caused by ES, or trying to get a referral to a doctor experienced with ES.
Have a look at @CoHDa’s x-ray image, you can see the styloid on the right side of the pic:
My Panoramic X-ray and CT - General / Eagle Syndrome Stories - Living with Eagle
I can’t find any others that have been labelled for you to compare yours with, hopefully one of our members who can do this for you will show you!
Hi Jules,
Thank you for taking the time to look at this and giving your opinion. Yes, I see what you’re saying so my thoughts for having ES could be possible. I hope someone will recognise my symptoms, would love to hear that.
I’ve been having lots of meds, but nothing seem to help so far.
Do you know a good link with research papers which show that TN and GPN can be caused by ES?
My neurologist doesn’t think it’s ES, but the MRI wasn’t done with contrast so does it show than? Isn’t a CT scan better to diagnose it?
Hopefully a CT scan is possible soon!
Thnx
Hi @JoyceG! Welcome to our forum. I’ve annotated your pano x-ray by putting a red oval around each styloid. As @Jules said, they’re very clear in your imaging thus they’re very likely elongated & causing at least some of the pain/symptoms you’re having.
A CT scan of the area from the skull base to the hyoid bone of the neck shows the styloids the best. A CT w/ contrast shows the styloids plus vascular tissues (internal carotid artery & internal jugular vein) & can be helpful in determining if the styloids are causing some vascular compression. MRIs are not as good for diagnosing ES because they’re designed to show soft tissues best & though the styloids can show in an MRI, often they are obscured by the soft tissues in the imaging.
I couldn’t get the full research article, but here are several links I found via Google. Unfortunately, I wasn’t able to get the full article for the first link:
I don’t know if you looked at our Doctors List but we have one doctor in your country on our list: •Professor H.A.M. (Henri) Marres, Prof. H.A.M. Marres (Henri) | Radboud University who did ES surgery for another member from your country.
I hope this information helps!
I’m sorry I forgot to add this to my post yesterday.
Hi Isaiah,
Thank you so much for all the info, also the articles are very helpfull and it’s all so recognizable! Also the ES information page Jules wrote, is as if it’s about me… What kind of doctor usually diagnoses ES, do you know? I’m going to see an ENT doctor tomorrow maybe he can help. You said you’ve annotated my x-ray, where can I find it?
Thnx
ENTs can diagnose ES, in theory a neurologist could as well, skull base surgeons/ otolaryngologists, it just depends on whether they are knowledgeable with ES really, sadly many doctors aren’t!
This study posted by @Isaiah_40_31 in the research papers category mentions both GPN & TN & the patient was cured after surgery, so a good one to show doctors:
Eagle’s Syndrome, from clinical presentation to diagnosis and surgical treatment: a case report - PMC
Sorry if you’ve already seen the ENT before you read this, let us know how you get on!
Hi Jules,
Meanwhile I’ve seen the ENT and a CT scan will be made. Although opinions about eagle syndrome are divided, much remains unclear about it, he said. From this I understand that it is not yet fully recognized, I did not know that? Anyway, we will wait for the CT scan. In the meantime, my neurologist also called yesterday that the MRI may show a conflict with a vein and the glossopharyngeal nerve, I have to go in for another MRI… Enough going on, I am busy with it…
Cheers and have a good w’end!
ES is fully recognised, there are many research papers documenting it by very respected doctors, but unfortunately doctors are taught at medical school that it’s very rare, so they don’t look for it. And adding to that are doctors who don’t understand it properly & do surgery without realising that the styloids need to be removed as close to skull base as possible, so they don’t remove enough to resolve symptoms, then think because the patient isn’t better that it couldn’t have been ES!
I hope that the next MRI is clearer whether there’s vascular compression of the GPN…
Yes, I told the doctor about all the medical articles etc. and that many patients had very good results after (thorough) surgery, he didn’t really respond…
But, he did agree on doing a CT scan, so I guess he has some believe in it.
Thanks Jules, let’s hope some helpful news comes out of the scans.
Hi Jules and Isaiah - @Jules and @Isaiah_40_31
So, the CT scan says I have extended styloids:
The length of the proc styloideus is 3.6 cm right and 3.2 cm left, in the coronal direction. So both sides have been extended.
The ENT doctor doesn’t think my problems are being caused by this…
Another thing is news on an MRI which said the following:
Elongated course of the vertebral artery on both sides with a vascular course (AICA) on both sides at the root entry of the glossopharyngeal nerve (and vagus nerve) with some compression on the medulla oblongata on the left more than on the right. Well suited for neurovascular conflict.
So for this my neurologist wants me to go to a hospital which has a better expertise on this and I’ll have to wait for many weeks before that appointment is possible.
What do you think about the extended styloids? I’d like to hear your opinion about it.
Thanks in advance!
Kind regards,
Joyce
It does sound from the report that possibly the glossopharyngeal nerve & vagus nerve could be being irritated by the artery then; this is a common cause of glossopharyngeal neuralgia as well as ES, so it might be worth looking at that further & being guided by what a neuro thinks. In the mean time, I can’t remember, what meds have you tried, you said you had taken quite a few?
Also Ben’s Friends have a facial pain group, they will have more info about treatments / surgery for vascular compression, here’s a link if you’re interested:
Finding support for facial pain? Connect with people like you. - Living with Facial Pain
If there is clear compression by blood vessels, then it does seem like that might be something to pursue rather than ES, as if the styloids were causing some irritation & pain, even if you were to get those removed, while there’s still compression further up by the vertebral artery, it probably wouldn’t be enough to stop the pain altogether until that’s dealt with as well…
Keep us posted!
I looked at your pic versus mine from the dentist. I would recommend using a 3d imaging program to check out your styloids like Radiant
I have one angled in looking like almost touching my jaw in photo but that isn’t the one causing all the pain and the ijv compression in neutral position.
@JoyceG - @Jules has given you a very wise & thorough reply. Though your styloids may be contributing to symptoms, taking care of the vascular compression first is a good plan.
I disagree w/ the doctor who thinks the styloids aren’t a problem, but it seems to me the nerve compression by your vertebral artery is a more critical problem right now.
I hope you’re able to get an appointment at the hospital sooner than you expect. 
Hi Jules and Isaiah - @Jules and @Isaiah_40_31
Thank you for your feedback, always helpfull! I will indeed wait for the appointment with the neurosurgeon first. I think it might be a good thing that he also sees the CT scan of the styloids, don’t you think so?
@JoyceG - YES! By all means make sure you take your styloid CT scan for the neurosurgeon to see plus any radiology reports you have related to the CT.
Definitely, see what he says, & it might be an opportunity to spread the word about ES…