Somewhat confirmed Eagle Syndrome, would love your opinions

General
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Thanks Jules, I really appreciate the information. I will start by looking to get the FIESTA/CISS MRI and based my Dr’s interpertation of the results, take from there. I’ll update with the results here once I get them

It is good to know that Amitriptylne does have some effect on the pain, I have read many stories even in LPR/GERD related forums where people did find relief to throat pain using this also, some sounding almost too good to be true - so I’m very tempted to try it

I’m really sorry to hear you’ve been struggling to the degree of needing to be on it for so long.. I hope you have found a way to manage your symptoms

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I’m good now, thank you, the meds keep pain at bay! I’ve had myofascial release massages over the last 6 months which are really helpful, & am trying to work on posture too- I think neck & shoulder tension have been contributing to the nerve pain too, I don’t think it’s just an ES symptom which never went…Let us know how you get on with Amitriptyline if you do try it!

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Yes for me I can definetly say that there is some link between the upper back (specifically traps) and my symptoms worsening. I reccomend trying dry needling of the traps with your physio, I’ve really found that helps along with sports massage.

Thank you I will definetly let you know!

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Hi Jules,

I just wanted to get your opinion on something, if I understand correctly you mentioned that Amitriptyline was initially helping you with the symtpoms almost fully but after having a disc surgery you believe the structures in your neck all shifted a bit causing symptoms to become too much to handle even with Amitriptyline

As I re-read my own posts from over 2 years ago in this thread, I realise the last time I had a terrible flare in symptoms as im currently experiencing - I mentioned I had recently lost some weight

Over the past year I have lost atleast 20 KG (44 LBS or 3 stone) as I have been on elimination diet after elimination diet to address what I thought were GI/LPR issues causing my constant sore throat. I’d say im ‘under weight’ right now as I did not intend to lose weight it was simply a biproduct of all the strict diets I’ve tried to address the throat.

I am now wondering again if this has maybe caused my symptoms to flare as with that amount of weight loss has clearly changed the size/width of my neck very significantly (several shirt sizes), potentially causing the calcified ligaments to be touching or impinging different structures/nerves as to when my neck would be significantly wider/larger.

It seems very coincidental to me that the very worst times I’ve had have all coincided with significant weight loss. What is your opinion on this theory?

I’m currently persuing an online consultation with one of the Dr’s on the forums list and pushing for the MRI regardless of this and ofcourse I cannot put the weight back on overnight but it might be worth trying to gain some weight in a healthy way to test this theory

Thank you

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@Gtx - Significant weight loss changes many things in your body including hormone levels & other body chemistry fluctuations in addition to the physical changes you’ve suggested. We’ve had members, more women than men, note symptoms increases with hormone level changes. I’m just suggesting that could be part of why you’re experiencing your current symptoms flare.

Since a sore throat is a common ES symptom, & one that some doctors wrongly require as necessary in order to diagnose a patient w/ ES, I expect it’s your styloids, not a digestive disorder that has been causing yours. It seems you have also come to that conclusion so I’m glad you’re reaching out to a doctor on our Doctors List.

I think your suggestion of putting some weight back on in a healthy way is a good plan. One way to help with that is by adding muscle. This doesn’t mean becoming a body builder, but by doing some training with light weights (5-10 lbs to start), or even just your own body weight, for 10 min/day, 3 days/week, you’ll succeed. There are videos on YouTube & likely other places that could help you get started. I’ve just begun a similar program though not for weight gain but weight loss in order to stimulate my metabolism. I also walk & hike for aerobic benefit.

Please let us know what you learn from your consult with the ES doctor you’re contacting. I hope (s)he is very helpful & supportive.

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I’ve not had surgery for my prolapsed disc, it has eased with physiotherapy and avoiding some activities which I think caused it… I’ve been on the Amitriptyline for quite a while now- it eased the nerve pain enough to manage symptoms so I opted initially to not have surgery. It was a year or so after this I then started having the disc prolapse & vascular symptoms started along with that. It was the vascular symptoms which then made me change my mind about surgery, I couldn’t live with those! I think the shift after the prolapsed disc and increased exercise around that time probably brought the styloids into contact with the IJVs & the exercise probably made the head pressure worse… It makes sense that perhaps losing weight for you has altered things in the neck a little- it’s such a cramped space that I guess even a couple of millimetres can make a difference… Fat can be stored under the skin in the neck which I would guess doesn’t really affect symptoms, but also deeper in the neck so that potentially good? It’s an interesting idea that it’s caused your symptoms, & seems pretty plausible if you’ve lost weight twice & noticed it both times! Often elimination diets are similar to an anti-inflammatory diet though, and some members have found this has helped symptoms, so you’re unlucky with that :hugs:

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Thank you both for the detailed and thought through responses (as always!)

I also do strongly lean towards my symptoms being due to the styloids (calfified ligaments not the process I would guess).

The weight argument is very interesting, for me personally I’d say my neck size would have shrunk by something like 25% at least - Enough for it to be very noticable to the naked eye. It was mostly muscle on the neck that has been lost.. I’ve lifted weights most of my life but have replaced it with cardio/lighter weights in combiniation with the diets at an attempt to improve gut health.

For better or for worse that has defintely changed the entire structure of my neck, as Jules mentioned even a couple of millimetres could make a difference in the area the styloids/calcified ligaments are angled or what nerves they are/arent touching

Whether or not this process is reversable is another question but I think its worth easing up on any elimination diets for a while and seeing gaining some weight back healthily changes anything while persuing the scan/consultation

Thank you

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One of my symptoms that occurred early on was 24/7 one sided sore throat. Mine has been going on for three years now, and thankfully in January I got diagnosed with Eagles. I am sorry you have this too, it definitely can impact your quality of life.

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Im sorry to hear you’ve been dealing with this for so long, it does really wear on you to have it be there 24/7 without any relief, I can relate to that part - although mine is less one sided than it used to be.

Have you had any treatments / medications that have helped you?

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I hope that easing up on the diets helps, especially as this doesn’t seem to have helped the sore throat!

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Hi all,

Since my last post I’ve had a consultation with Dr Osborne. To summarise he told me that there is basically no way of really saying whether my symptoms are from eagles even if we gather a lot of evidence for this it would just be an educated guess. He told me to have my spine looked at by a spine specialist and get a CT, I’ve been trying to avoid getting another CT as I had a upper/lower abdomen contrast CT not that long ago.

I asked if the Fiesta MRI would be useful, he told me MRI’s are effectively useless for this diagnosis, although the radiology department of the place I have access to did confirm they can visualise the styloids/nerves in that area with a contrast Fiesta MRI.

I appreciated his honesty and not wanting to jump to surgery however it did also confuse me a bit as the previous Dr’s I’d seen (ENT/Maxillofacial surgeon) were fairly confident that I do have eagles based on the pano x ray alone. Dr Osborne is much more specialised in eagles though so I’d have to lean towards his opinion more.

He did lend credence to the theory that my significant weight loss could plausibly contribute to an increase in symptoms, he mentioned larger people/necks often have less issues with this because there is more space in there.

I went ahead and got an MRI of the spine first as he suggested this, I’m currently still in a horrible flare up with constant upper back pain, sore throat above the Adam’s apple, a constant feeling of swelling in the right side of the neck (entire SCM muscle) and a feeling of pulling/tugging at the corner of my right jaw. My head basically always feels too heavy for my neck to carry

The only thing that reliable reduced throat pain is eating, while eating it is much reduced but it returns shortly after, which I find difficult to explain. Also when having drank alcohol (2-3 drinks) it is somewhat reduced, while the back pain isn’t.

MRI results:

Overall Summary

  • Most important finding: A C4–C5 central disc herniation that contacts and indents the spinal cord, but without any MRI evidence of spinal cord damage (myelopathy).
  • Additional mild degenerative disc changes are present at C3–C4, C5–C6, and C6–C7.
  • There is mild left-sided foraminal narrowing at C3–C4 and C6–C7, which could potentially irritate the corresponding left cervical nerve roots.
  • The thoracic spine is entirely normal.

Based on these results is there a chance that my pain is being referred from the cervical spine? Have others here experienced this? The Orthopedic doctor who reviewed these results was completely unaware of eagles or anything throat / front of the neck related and in the short amount of time we had together I couldn’t explain it to him

Thank you

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Obviously we can’t say that for sure…but many of us have other things going on with our C-spine, and prolapsed discs seem to be quite common… Personally I had a prolapsed disc C5-C6, physiotherapy (gentle neck exercises) did help a bit with tingling I was getting in my little fingers and at the back of my neck, as well as a bit with occipital neuralgia type pain, but didn’t help the ES symptoms of jaw pain, ear pain, TN, facial tingling. Being diagnosed with the disc issue did happen at the same time as I started to get vascular symptoms, but these resolved with the ES surgery, nothing else helped that.
Nerves exiting at C3 could give neck pain, at C4 it can be the phrenic nerve, and could affect breathing, and also cause shoulder pain, so there’s some overlap with ES symptoms there. C5, C6, C7 narrowing could affect shoulders, arms and hands. But I would think swallowing difficulties are more from the pharyngeal and vagus nerves, which exit at the jugular foramen next to the styloids…
Most doctors don’t guarantee that surgery will help with symptoms though…

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@Gtx - Even though Dr. Osborne is very experienced w/ ES, we don’t always agree w/ the calls he makes on people’s imaging. We don’t want our members to ever feel like they’re “beating a dead horse” as they search for a diagnosis(es), but based on what your pano x-ray shows, your styloids are elongated, & I firmly believe that at least some of your symptoms - especially sore throat, could be related. The fact that your pain is just above your Adam’s apple & your SCM feels swollen, makes me wonder if your hyoid bone is also contributing to symptoms.

A CT of your neck from skull base to at least your hyoid w/ or w/o contrast (CT contrast is iodine/water based so leaves your body easily unlike the gadolinium based MRI contrast) would help to solve that mystery. I know you’re not thrilled at the prospect of more radiation, but our bodies do recover from that (we get a lot of radiation when we’re outside enjoying the sun, for example), & if one more CT is the key to helping get a diagnosis, it’s at least worth considering.

Regarding the findings in your spine MRI, there could definitely be some symptoms coming from the nerves in your cervical spine. I found this article online that might help you better understand which body parts specific cervical nerves can affect: https://geekymedics.com/dermatomes-and-myotomes/

It is odd that eating reduces your pain, but makes sense that drinking alcohol also does as alcohol is a type of anesthetic. I don’t know why alcohol would reduce throat pain but not back pain unless it has something to do w/ the more direct contact of the alcohol w/ the nerves in your throat as you drink it. Upper back pain (shoulders, traps, scapulae, rhomboids, shoulders & SCM) is often caused by irritation of the accessory nerve by the styloids. That is a very common ES symptom. Even though your styloids aren’t exceptionally long, their angle or curve of growth can still be allowing them to irritate local nerves which could be contributing to your symptoms.

There are other doctors in the US who do virtual consults. You could try Dr. Hackman in North Carolina as he is also quite experienced w/ ES & hyoid bone problems. I’m not sure if Dr. Osborne has experience with things that are related to the hyoid bone.

•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484 Trevor G. Hackman | UNC Health

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@Gtx I had bilateral styloidectomies with Dr. Osborne. I am very glad I did, and I think he is an exceptional surgeon, but I also wish I had known the full extent of what was happening in my neck before surgery. That is not on Dr. Osborne; in my case, I blame the radiologists because I had years of MRIs and CTs, but the bigger picture was not acknowledged. Knowing more beforehand would have helped a lot with expectations and next steps.

I think it is really significant that he suggested you take these additional steps before surgery. From what you have written, it sounds like your styloids could very likely be contributing, as they were for me, but they may not be the only contributing factor. Depending on what else is going on, it could require a different surgeon as @Isaiah_40_31 has mentioned, or a different specialty all together for the remaining issues which is turning out to be the case for me.

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Thank you all very much for the responses

@Jules @Isaiah_40_31 I get a ‘tinging pain’ between my shoulder blades more to the upper end, where the back meets the neck, it feels like someone hit me with a sledgehammer on that spot. This is something I’ve had on and off for many years and has been debilitating for periods - the way I managed to deal with it was very counter intuitive, it was to do heavy weight lifting at the gym which eventually made it go away. If I took a break from regular lifting for even a few weeks, it would always come back. This is something I’ve disregarded this last year as I was hyper focussed on diet and believing my throat symptoms were GI related. I will work towards using this same method to try and get the back pain to improve and then see if the throat symptoms improve along with them, although it’ll be a long road back (1 year+) as I’ve lost a lot of weight/mass.

I never linked these back symptoms with the front of the throat / front of the neck symptoms I’ve had over the last 2 years but I’m now wondering if they are related also based on Dr. Osborne’s insistance that I should get checked by a spine doctor. The orthopedic doctors conclusion was that there are some issues, but nothing to operate on, so do physiotherapy. I have extreme upper trap tightness/SCM muscle tightness - my physiotherapist always points this out and we do work on it, but it doesn’t seem to be improving my symptoms currently. Also there is this hard/tight guitar string from just in front of the corner of my jaw to my hyoid bone that no doctor has been able to explain yet :grinning_face_with_smiling_eyes: We dont know if it is a calcified stylohyoid ligament or possibly digastric muscle

Thank you providing Dr Hackman’ details, I will consider a consultation with him also, although if he gave me much differnt feedback from Dr. Osrborne that would also be very confusing. The throat soreness does seem to be around the Hyoid bone as you mentioned though and I wasn’t aware that this might not be in Dr. Osbornes wheelhouse, so it might be worth a consultation/

@MGORNEAU
I’m really sorry to hear that having bilateral styloidectomies did not resolve all of your symptoms, that is so difficult. I experienced this to a degree with the inlet patch ablation, as the doctor and I were very certain this was the sole cause - Having that happen in a much more serious surgery must be really dissapointing. I’m reaching a point that I’m sure you and many on this forum can relate to (and far beyond) which is that I’m overwhelmed with options, each potential next step has serious implications (potential surgery of something that might not be the cause at all) however what ever the cause, the symptoms are currently dominating my life unlike previously when it was mainly the globus/fish bone sensation that was managable.
The constant sore/hoarse throat/voice right now has the biggest impact on daily life.

Thank you for the suggestion to get more diagnostics done before considering surgery, if you have any suggestions beyond the CT that was reccomended please do let me know - was the FIESTA MRI useful for you? Dr. Osborne mentioning that MRI’s were useless has confused me a bit in that department, I had the scan lined up at a local clinic but have put it on hold for now

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This could be caused by your spinal accessory nerve which innervates the muscles in that area though I don’t have an explanation as to why weight lifting would stop the pain temporarily.

If I understand you correctly, you’re thinking of trying diet to reduce your shoulder pain symptoms. Have you found the diet you’ve used to decrease ES symptoms to be helpful at all? We have had a few members who’ve had some success by going on a strict anti-inflammatory diet. Is that the direction you’re going?

Here’s a picture of where the spinal accessory nerve exists in the body so you can see how it could be the cause of the sharp pain in your shoulders near your neck.

Screenshot 2026-06-29 at 2.40.29 PM
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@Gtx Thank you. I actually do not regret the bilateral styloidectomies at all. Some symptoms did improve or resolve, so for me Eagle was definitely part of the picture. The issue is that not everything resolved, which is why I am now looking more closely at other possible contributors, including the C1 / arcuate foramen area and soft-tissue involvement.

I completely understand the confusion around imaging. In my case, different imaging answered different questions. CT/CTA/CTV was most useful for looking at bone, styloids, vascular anatomy, and compression. MRI was useful for soft tissue, spinal cord/thecal sac, nerves, lesions, inflammation, etc. So I would not say MRI is useless across the board; it depends on what question you are trying to answer.

For Eagle/styloid anatomy, CT/CTA is usually the stronger study. For soft tissue, nerve, brainstem/cervical cord, or something like a lesion/fascial banding question, MRI can still be very useful. I did not have a FIESTA MRI specifically for Eagle, so I cannot really say whether that would be useful in your case, but I have found imaging can reveal things they don’t appreciate until later.

In my case, it has not been only about elongated styloids. There also appears to be calcification/ossification and soft-tissue lesions involved, almost like an Eagle-type process but potentially occurring in other areas of the anatomy as well. So it really requires someone willing to look at all possible contributing factors together.

I think all of the imaging matters. Each type can show a different aspect of the process: bone, vascular anatomy, soft tissue, nerves, cord/thecal sac involvement, or progression over time. It also creates a record that can be reviewed again later, especially if something was missed, not fully appreciated the first time, or has progressed over time as mine has.

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Thank you both

@Isaiah_40_31 To clarify, the back pain is a lot more in the back of the neck/very top of the back in the middle, I don’t have shoulder pain. I have tried almost every diet in the last year because my general Dr believed the throat pain stemmed from gastrointerolity related issues (LPR/reflux) and honestly, none of them have produced any meaningful results besides a lot of unintended weight loss. I even did a 4 day water fast, during which my throat was more sore than ever, which is one of the reasons I no longer believe it is acid/GI related as I’d expect a 4 day break from ingesting anything but water would produce some relief and not worsening, if it were LPR/acid reflux.

During the process of lifting weights I do not get relief, I need to clarify as I didn’t explain that properly. What I meant was that I have looked back at the 2+ years since first having these symptoms and noticed that the times that things were managable (no constant sore throat) I was in a very muscular physical state, regularly lifting heavy weights and the worst times coinicded with taking time off the gym or even switching to more cardiovascular exersize. I’m not referencing general health or aesthetics, I simply mean the shape/size of the neck/shoulders/upper back and the spacing that creates around all the structures in the neck.

To give a crude example of what I mean, my body shape used to be more towards the very right figure a year ago and is now more towards the very left figure. The weight loss has been significant - a combination of muscle and fat.

Even on this generic illustration you can see how much more space there is in and around the neck on the very right figure. When my shoulders are much wider, the neck is wider, the traps are larger and there is more weight having gravity pulling everything down, this logically creates a totally different frame for all these structures/nerves we discuss to sit in, For better or for worse.
Dr. Osborne acknowledged that larger people/necks do usually have less issues because there is more space in there.

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This drastic change in body shape coincided with my constant sore throat coming on, however I didnt consider that being related at the time as I was so tunnel-visioned on it being a GI related issue guided by GI’s. Dieting, taking PPI’s etc.

I can see the width of the back of my neck is probably at least 2 inches thinner than it was a year ago, this is exactly where the accessory nerve sits on the picture you posted, all of this to say that this is potentially newly being compressed due to my body shape changes.

I believe this is the best chance I have at mitigating symptoms non surgically. It’s plausible that by having lost so much weight and having a much thinner neck, shoulders pushed up, smaller traps, everything being ‘compacted’ in that area, the calcified ligaments could be touching nerves or structures they weren’t previously.

Because i’m struggling with pain in the area already it is feels counter intuitive to load the spine with weights but the spine doctor has told me it is ok to start building back into workouts, so I’ll be pushing through and working up to heavy lifting regardless of pain (i’m in pain anyway, so I feel there’s not much to lose and avoiding weight training has clearly not helped) to try and build back some of the ±50 lbs of weight I have lost. Although this will take time, a year at least to gain back meaningful size.

In the meantime I will work on trying to get more imaging to have a clearer picture @MGORNEAU thank you for the information and suggestions. I initially believed that the presense of calficied stylohyoid ligaments in conjunction with the symptoms would mean a clear ES diagnosis and a surgery reccomendation but I’m now seeing how much more complicated it can be. I’m really glad to hear that the styloidectomies did atleast improve some of your symptoms

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I don’t want to confuse you any further, but re your comment about doing a water fast & throat being just as sore, I’ve had spells of possible gastritis with a very painful, gnawing stomach, presumably from acid, and actually just drinking water makes those symptoms worse! It’s been better to have a bit of food when my stomach’s painful! But this might not be relevant to you & your sore throat!
Definitely all very confusing, it’s strange that you’ve felt better when you’ve built up more muscle doing weights, you would think that more muscle if you do have muscle tightness would make that worse. And I understand where you’re coming from about thinking there could be more room in the neck when your neck is bigger, but if it’s bigger because of muscle then surely this muscle would fill the space? But worth a try!

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@Gtx - It’s clear that you have a good understanding of your body & have tried to take care of it in ways that seem to make sense over the last year, but unfortunately the outcome hasn’t been what you expected. It’s so frustrating to make an all out effort to help resolve a health or physical problem only to have it backfire. It’ll be interesting to see if adding back some muscle & weight will be helpful in reducing your symptoms.

Jumping back up to the CBCT/panoramic x-ray image you posted & back paddling a little, you do have significant styloid & stylohyoid ligament calcification even if there is a separation between the two. The styloids don’t show up in that sort of imaging unless they are longer than normal. If the s-h ligament calcifications are attached to/extending from the lesser horns of your hyoid, those could be causing your hyoid to be somewhat tethered so it can’t move in the manner it’s supposed to when you talk, swallow, breathe, etc., thus that could be part of what’s causing some of your symptoms.

I’m glad you’ve found doctors who are willing to do your surgery & if/when the time comes you decide to go ahead with it, make sure you discuss what exactly they plan to remove & what will be left behind. We’d also like to know whom you choose to do your surgery so we can add one or two names to our Doctors List for your country.

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