thank you for this information i plan on calling a few offices to see who can get me a consult.
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Hi everyone!
II hope it’s okay for me to share a few more MRI and X-ray images that I found at home. I’m still waiting for my appointment, and in the meantime, I’d really appreciate hearing your opinions or any observations you may have.
I think these MRIs were taken too low to actually show the styloid process, but just in case they might still be useful, I thought I’d share them with you.
Thank you very much in advance for your time and help! 
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You can see the styloids on a couple of the images, but the ones you posted first show them the best…
thanks for your answer, yes i was thinking that the first X ray is the most valuable
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@junonbss - I edited your images to remove your name from them. Please be careful to make sure your name, birthday, etc. are removed from any imaging you post on the main forum going forward. I annotated one CT slice at C1 where the styloids, IJVs & C1 are visible just for your information. I can’t see anything significant in the image though I can say when the styloids are visible at the level of C1, they are longer than normal. That info is also visible on picture 4425.
The right greater horn of your hyoid looks quite long as well. It’s something to consider as Hyoid Bone Syndrome has symptoms similar to ES in particular causing clicking & pain when swallowing plus sometimes difficulty swallowing. Another problem w/ elongated greater hyoid horns is they can bump into or compress the internal carotid arterty(ies) & cause stroke-like symptoms, heart pain, & carotid pain in the neck so there is a possibility some of your symptoms may be caused by your ICA.
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Hi Isaiah,
Thank you so much for taking the time to look so carefully at my images. I really appreciate all the effort you put into helping me.
Thank you as well for covering my personal information before posting the images. That was very thoughtful of you, I forget that!
I also found your comments about my styloid processes and hyoid bone very interesting. I hadn’t considered that there could be more than one anatomical structure contributing to my symptoms. I will definitely mention this to the specialist when I finally have my appointment.
After living with neck pain for almost 10 years and severe daily jaw pain for the last year and a half, I truly hope I’m finally getting closer to an answer.
Thank you again for everything you and this wonderful community are doing for me. Your support has given me so much hope.
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Little update, i found a Dr in Paris who know this syndrom (found him on internet) it’s Dr Majer. I found a visio appointment with him on 13th July and I will see the other Dr the 16th July : so I will receive 2 differents medical opinions. Lots of Hope here
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That’s good, look forward to hearing how you get on!
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I’m so glad you’re able to get two opinions instead of just one, @junonbss. I, too, look forward to hearing about both opinions. Please remember that even doctors who are familiar with ES can have strict opinions about specific symptoms needing to be present or beliefs about other symptoms not being related which we know can be. That’s to say, don’t be discouraged if you don’t receive good support from one or both doctors. There are others who will be more supportive.
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Thank u so much I will update soon 
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Thank you so much for your kind words and encouragement. I promise I won’t give up.
Unfortunately, I am already very familiar with the challenges of living with a rare condition. With my hypoparathyroidism I struggled to make my symptoms heard and taken seriously by doctors. I only found a solution and an effective treatment for this condition this year, after 10 years of suffering and searching for answers.
I have learned that with rare diseases, patients sometimes have to advocate for themselves and keep searching until they find the right specialist. It can be exhausting, but I have no intention of giving up.
I am very grateful to have found this community and to receive support from people who truly understand these challenges. I will definitely keep everyone updated after my appointments and let you know what the specialists think.
Thank you again 
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You’re very brave and very strong! 
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Hello everyone…
I had my appointment today with an ENT/head and neck surgeon and honestly I am feeling very disappointed. It was a visio appointment, really fast. I was surprised cause he got really good review on Google.
He acknowledged the elongated styloid structures are visible on my panoramic X-ray, and he even prescribed a CT scan specifically to evaluate the styloids (3D scan). However, he told me he does not really believe my symptoms are related to Eagle syndrome.. it’s a really rare conditions bla-bla-bla (he probably think all of this is related to stress 
)
Instead, he suggested Botox injections and even mentioned a night guard/splint. What frustrates me is that I do not have typical jaw muscle pain or classic bruxism symptoms. My main issue is severe facial and trigeminal-type pain on the left side, radiating to my ear, eye, neck, shoulder and sometimes even my arm. I have also experienced episodes of vagal symptoms, feelings of impending doom, dizziness, and discomfort after eating or hot showers.
I have already tried Botox in the past on one side without any benefit.
After years of searching for answers, I was really hoping this consultation would provide more clarity. Instead, I left feeling like I was being offered another symptomatic treatment without a real explanation for what is causing all of this.
The good news is that he did prescribe a CT scan, which I will have in two days, and I also have a second specialist appointment later this week.
Right now I feel discouraged, but I am not giving up. I would love to hear if anyone else was initially told their symptoms were unrelated to Eagle syndrome, only to later discover that Eagle was actually involved.
Thank you all for your support.
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@junonbss - We have many members who’ve gotten the same “song & dance” from the doctors they saw for ES i.e. that even though they had elongated styloids, they couldn’t possibly have ES because it’s so rare. That’s a ridiculous comment as styloid elongation or irregular shape plus nerve symptoms such as you have is ES by definition!! Clearly the doctor you saw today doesn’t know much about ES. It is good he referred you for a CT scan. I hope it’s with contrast just in case you have anything vascular going on. I hope the next specialist you see is more helpful.
Sadly, we’ve had a number of French members over the years & have not had a reliable, ES knowledgeable doctor to refer them to. If our members in France have surgery, it’s by traveling outside of the country. I recall we had one French member who had surgery in Belgium done by this doctor - •Dr. Thierry Ladner, Hospital CHIREC, https://www.doctoranytime.be/d/stomatologue/ladner-thierry?utm_source=gmb&utm_medium=organic&utm_campaign=profile
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I’m sorry that he wasn’t very helpful, unfortunately it’s a common experience! I hope that the CT scan changes his mind, if you’re able to get copies of the images that would be helpful as if he’s still not convinced you can share your images with a different doctor…
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Hi,
Thank you very much for your reply and for taking the time to answer me. I must admit I was quite disappointed after my appointment, but at least the ENT has ordered a CT scan specifically to evaluate my styloid processes.
This is the exact prescription:
“Cervico-facial CT scan without and with contrast injection. Reconstruction in the three planes of space. Evaluation of elongated styloid processes. Please provide the examination on digital media.”
My CT scan is tomorrow and I also have an appointment with another maxillofacial surgeon recommended by my dentist the same day, so I am keeping my fingers crossed that she will be more familiar with Eagle Syndrome.
In any case, I have noted the contact information you provided in case I need it in the future.
I also had one more question. If I receive the CT scan on a CD containing the DICOM files, is it usually possible to generate 3D reconstructions afterward using software or an online service? If so, do you have any recommendations?
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There’s a tutorial one of our members posted a link to a while back, hopefully this will help:
RadiANT DICOM Viewer tutorial - General - Living with Eagle
I hope the scan goes okay, and that the other doctor is more knowledgeable!
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Thanks so much, I did some mesures and pictures of my last CT scan in 2025 before my removel teeth and the horrific pain at my left side. Before that, during 9 years I got an occipital and retro orbital pain who feel excruiating at my right side!
I think you will see many more things than me, I show you what I found. The styloid here seems to mesure 5 centimeters maybe ?
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@junonbss - The images of your styloids are excellent, & as you noted, they are quite long & curved. I hope the doctor who claimed you don’t have ES takes one look at your CT pictures & “eats his words”! You now have graphic evidence of what’s causing your symptoms!!
Unfortunately, the images appear to show your muscles which are covering the veins & arteries in your neck so I can’t see anything but your styloids. I believe, the RadiAnt link @Jules sent you may have information about how to remove different layers from the imaging to get to the structures you want to see. If you’re able to remove the muscles & reveal the vascular tissues then repost your images, we can comment on them then.
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The scans I posted are actually from an older cervical CT scan that was not performed specifically to evaluate Eagle Syndrome. I have a dedicated CT scan of the styloid processes scheduled for tomorrow, with contrast injection, so I hope it will provide much better visualization of the anatomy and any possible vascular involvement.
I use a Mac, so I was not able to use the Windows software recommended on the forum. Instead, I imported my DICOM files into Horos, which allowed me to generate the 3D reconstructions and review the axial, coronal, and sagittal slices.
Once I receive the new contrast-enhanced CT scan, I will try to isolate the vascular structures and upload additional images for review.
Thank you again for your help and guidance!!!
Tomorrow it’s another specialist and I really Hope she will be able to understand
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