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Eagle's Syndrome ? (Page 1)

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Hi,

Please help, pain in my neck and upper jaw are driving me crazy.

I'm a 39 year-old male, for the rest healthy, but for the past few years I've been suffering from complicated and severe unilateral pains in my neck, upper jaw and throat, and I am looking for clues. If you recognize this pattern of symptoms I'd like to hear from you because I can't wait to learn more about what it may be. At least some of it seems to match with Eagle's Syndrome, but I haven't yet been able to get that confirmed. Any experience with that would be great too!

Through the past few years I have seen many doctors/therapists and tried a wide variety of medication, but will not write about all those tiresome and often disappointing efforts here (the resulting story would simply be too long (and probably too boring) to publish here). But the bottom line is: I have unilateral pains in my neck and mouth/face, the pains ruin my life, I barely sleep, I am running out of ideas for diagnosis/treatment (which terrifies me) and I am turning to the internet for clues. Does anyone have a clue what this might be??

Below my symptoms. If you experience similar pains/symptoms please reply, I would be very grateful. Below my description of symptoms, in no particular order (not sure if each and every one is related, but I just wrote them down because they may be related):


1. pains in upper jaw and upper neck (right side, below the ear), for more than 10 years, getting worse with time. The pain is dull and deep.

2. the pains are worse when lying down. It doesn't matter if I sleep, after about an hour or two the pain in my neck - radiating to my upper jaw - becomes very bad and I invariably wake up in a lot of pain. In my bed I am constantly turning, trying to find a position that doesn't create the pain, but such a position hardly exists (it does sometimes, see below). During the night I get out of bed many times for the pain to alleviate a bit. Getting any real rest is close to impossible.

3. Eustachian tube inflammated, it feels like there is inside pressure on right ear. And that ear is somewhat more sensitive to loud noises.

4. voice is hoarse a lot and I keep clearing my throat. Some friends can sometimes tell by the sound of my voice whether I am in pain or not.

5. yawning sometimes gives me a short sharp sensation in the back of my throat.

6. in the tonsil area under the skin there seems to be a bump that is very sensitive (if I softly push it, it radiates tremendously and is painful for days).

7. sinuses on the right side are often a mess.

8. limited range of head rotation.

9. had a bump on the right side of my (upper) neck, physiotherapist massaged it and is now gone (but since that moment the pains got worse).

10. for the past two years a persistent cough that is resistant to different anti-biotics etc.

11. brain fog. During day-time the pains are worst during the morning hours (because pains are worst at night), I have trouble thinking clearly. But the pattern of pains can be unpredictable too (or rather: I not have found the pattern yet.).

12. I feel miserable a lot of the time, vertigo and completely out of energy.

13. the position of my head matters. Pain is worse when I lie down (whether I sleep or not) and during the night I wake up many times because of (often terrible) pain in my neck. In bed I am always turning trying to find an optimal position for my neck, but that position hardly exists. If I lie on the painful (right) side it gets worse, lying on my left side is better (less bad). The most remarkable thing is that when I lie on my left side and supporting my head with my hand (pushing head to right shoulder) the pain can sometimes disappear completely. When that happens I suddenly can start thinking again, it can be a remarkable transformation in seconds. This leads me to believe it is not a purely neurological and permanent disorder, because it can be influenced by mechanical changes.

14. for the rest I am a healthy person, I don't smoke, hardly drink, have no history of (family) diseases etc. As a child I had a tonsillectomy and as a child I fell on my head a few times. Because of severe pains in my upper jaw a good deal of (in hind sight probably unnecessary) dental work was done.

15. various X-rays and two MRIs were made, nothing unusual was reported.


Medication hardly works. I take some NSAID painkillers and sometimes stronger ones to help knock me out at night in order to get a bit of 'sleep' from time to time.


I feel there is reason to believe that the origin of the problem is mechanical, not neurological. It appears not to be herniated discs, TMD, arthritis or trigeminal neuralgia, cancer, because those have been looked at and ruled out by different doctors. Eagle's Syndrome? I went to an oral surgeon, but he had no clue what ES is, and multiple ENTs didn't come up with it either. Is there anyone out there who recognizes these symptoms? What if it seems very likely to be Eagle Syndrome by the looks of it, but no doctor can diagnose it?

I posted this in the forum for back issues too. Many thanks for any help, I would really appreciate it!
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First Helper User Profile Weebo
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replied November 7th, 2009
Eagle Syndrome
I have just had a 3d CT (It is the only test that will diagnose Eagle Syndrome) which confirmed eagle syndrome and I had most all of the symptoms you mentioned. I had all the MRIs, CTs, and every other test under the sun for the last 10 - 12 yrs with no answers.

Finally I went to the Southwest Pain Center in Phoenix. I will be seeing an ENT this month at Mayo Clinic. Good Luck and hope you find the answer.
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replied November 10th, 2009
Eagles Syndrom and Fractured Styloid
Mayo Clinic in Minn saved my life I was in so much pain with Eagles syndrom I wantd to jump in front of a bus. They did surgery and found I had actually fractured my Styloid Process away from the temporal bone in my scull. Surgery saved my life. Go to Mayo. Don't be afraid let them help you they are the best!
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replied November 2nd, 2011
Eagle Syndrome Question
Mypohaku,
Any reason this would of happened. Did you have a inury to the head of some sort? I am in alaska and no doctors can help me. Who did you see at the mayo clinic, what types of doctors?
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replied November 2nd, 2011
Eagle Syndrome Question
Mypohaku,
Any reason this would of happened. Did you have a inury to the head of some sort? I am in alaska and no doctors can help me. Who did you see at the mayo clinic, what types of doctors?
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replied November 22nd, 2009
Eagle syndrome: Diagnosed and had surgery for it.
I did in fact have eagle syndrome..I have two calcified ligaments, one on each side of my jaw. The stylohyoid ligament attached to my elongated styloid process. After years of chronic, intense pain like you have described, I found two drs who knew of eagle syndrome, and then a head and neck surgeon who did "exploratory surgery" for me because he saw I was in such terrible pain. He cut the styloid process and cut the ligament out. He said he never say anything like the mess that was goin on in my throat/neck. The relief was incredible. MRI's and CT Scans did not show this condition!! Do Not give up. Look for Top head and neck surgeons in large cities(I live in NYC) and get appointments. Top ENT drs also should be knowledgeable about this syndrome. An ENT at Beth Israel Med Ctr was the first dr to immediately diagnose the problem after listening to my symptoms. Certainly top oral surgeons who are educated on tmj problems. Good Luck. God bless, the pain is unbearable.
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replied July 3rd, 2011
Surgery for Eagles Syndrome
Can you mention who the top head and neck surgeons in NYC are for doing surgery for Eagle's syndrome? I have been diagnosed with it.

Thank you,
Joan123
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replied December 3rd, 2009
Experienced User
In literature I found the following about diagnosing Eagle's Syndrome, perhaps of interest:



The diagnosis of Eagle’s syndrome is based on four different parameters:

(1) clinical manifestations
(2) digital palpation of the process in the tonsillar fossa
(3) radiological findings and
(4) lidocaine infiltration test. During the lidocaine infiltration test, lidocaine anesthetic is administered to the area where the styloid process is palpable in the tonsillar fossa. If the patient’s symptoms and local sensitivity subside the test result is considered positive and Eagle’s syndrome is diagnosed

A patient exhibiting the symptoms associated with Eagle’s syndrome, may consult their family physician or an otolaryngologist, a neurologist, a surgeon (neurosurgeon, maxillofacial or oral surgeon), a dentist or even a psychiatrist in order to be diagnosed. Persistent pain and other symptoms could aggravate the psychological state of a patient. By the time the syndrome is actually diagnosed, many patients have already visited some of these doctors, who have unsuccessfully tried to treat their symptoms. This is quite understandable considering that the clinical manifestations of Eagle’s syndrome resemble those of many other diseases. Consequently, it is quite difficult to make a correct diagnosis based solely on clinical manifestations. However, it is very important for physicians and dentists to include Eagle’s syndrome in their differential diagnosis when treating patients experiencing pain in the cervicofacial and cervicopharyngeal regions.

A 3D-CT scan is considered the gold standard in the radiological diagnosis of Eagle's Syndrome. It provides an accurate measurement of the length and angulation of the styloid process and is considered to be the best supplement to the plain x-ray.


It is important to note that an elongated styloid process does not necessarily signify Eagle’s syndrome, as the majority of individuals exhibiting this anatomical anomaly experience no symptoms. Additionally, although an elongated process is found bilaterally in most cases, patients typically display unilateral symptoms. Also it is noteworthy that the occurrence of the syndrome correlates with the length of the styloid process, its width and its angulation. In fact a number of mechanisms can result in the onset of the syndrome and are responsible for the variety of symptoms. Consequently, patients may experience any number of symptoms, which often mislead physicians and necessitate the use of other data such as radiological findings to confirm the diagnosis. Both physicians (head and neck, oral and maxillofacial surgeons) and dentists must have a high index of suspicion for this clinical entity. Eagle’s syndrome should be included in the differential diagnosis of cervicofacial and pharyngeal pain. The fact that it is often excluded in such cases results in underdiagnosis and, consequently, an underestimation of the incidence of this syndrome.
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replied December 6th, 2009
Eagle Syndrome
I had Eagle Syndrome and felt everything you are describing, especially when you touch your tonsil - ouch! There is a Dr. at UCLA who understands this problem very well. If you do in fact have this, you will have instant relief after surgery. My CT Scans and MRI's did not show it either. Mine was found because my right tonsil was enlarged and felt painful, in addition to many other symptoms. Right ear pain would wake me from a sound sleep. It was very painful and frustrating, took more then 5 ENT's. The surgeon went to remove my tonsils and hit bone, it was poking into the tonsil. A 3D CT is a good idea. Good Luck to you.
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replied December 17th, 2009
I have just been diagnosed with Eagle's Syndrome. I live in Eastern Pennsylvania. Does anyone know who is the best in the areas of Philadelphia or New York?
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replied December 23rd, 2009
Experienced User
A few images 3D-reconstructed from a regular CT-scan (of me). Styloids styloids..








The (free) software for making such 3D reconstructions yourself can be found here:

http://ehealthforum.com/health/reconstruct ing-mri-ct-scan-results-t192456.html
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replied January 4th, 2010
forgive the side tracking of your post.

mayo clinic in rochester minosota. WOW!!! talk about a place!!!!

i been to pretty good amount of unverisites and speciality places and hospitals but mayo nocks the socks off them all.

for myself. they gave me a general doctor. that then refered me to different doctors within mayo. it took a week i think for me. but the hotels around mayo all at the time had free shuttle buses. and ya just told the person at the doors and few minutes later your shuttle bus was there. no long walks. though a couple times there was some long waits. but majorty of the time it was a short wait to get into doctors.

every doctor had a complete report of previous doctor saw in mayo. and quick easy access to given doctor. it wasn't no go see this doctor and wait a week or something then go pick up a given doctor report and then take it back to get anotehr refeal. but all the info was in house. and quick computer access. and actual team play between all the doctors i saw. and not private folks in there own place.

there is how ever a couple times of the year mayo is rather busy, as in long waits no matter what you do. if memory serves during christmas, and if memory serves some time during spring / summer they get really busy.

i so wish local hospitals and private doctors could get a setup like mayo! heck it was like a private city all developed for mayo. food to hotels, and more importantly setup for the doctors and patients to get things done.
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replied February 9th, 2010
Experienced User
Recently I found an ENT who started looking into Eagle's. Two weeks ago a long working anaesthetic was injected into the area of the painful styloid process (right side) and it worked very well. The combination of elongated styloids (images above) and a well working injection could indicate Eagle's; can't wait to see what the ENT will say. Keep you posted.
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replied February 9th, 2010
The pain and disfunction associated with Eagle's Syndrome is so varied that the diagnosis can be difficult to make. I have read the many replies you received. I must agree that a CT scan will show the hard and soft tissue and a firm understanding of the anatomical considerations can be made. Only your Dr. can advise you if surgery can correct the problem. If you are unsure of what to do, please get a 2nd, 3rd or more opinions. Dr. Paul wira
Specializing in facial injuries and pain, corrective jaw surgery, wisdom tooth removal, dental implants, bone grafting, and TMJ
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replied April 20th, 2013
if surgery is done for eagles syndrome , why does the pain return ? wat r d risk factors of surgery?
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replied February 14th, 2010
Experienced User
Dr Wira, thank you for your reply and thank you for helping people on this forum. The value of this forum is great, thanks to people helping trying to help each other, and doctors like you who are willing to give their expertise and time to helping people from all over the world. Simply great.

This week I was diagnosed with ES and I am scheduled to have surgery (external approach) in the next few weeks. The above mentioned injection in the area of the SP worked quite well and based on my symptoms, the above images and the relief from the injection, the ENT confirmed I have a high suspicion for Eagle's Syndrome and proposed surgery.

I have found that finding out more about ES is not easy. During my searches I have collected some informative articles on the matter. If you're interested, just send a message to my inbox and I'll be happy to forward them.
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replied February 23rd, 2010
I just read your profile starting with your detailed entry of your symptoms back in November. After reading that, it sounds like Eagle's is what I should have had. You seem like you have spent so many hours in research, as have I. Now that I think I have not been cured with surgery, are there any other diagnosis you have considered?

The only way I get sleep at this point is by taking ambien and 1 vicodin before bed. I wake up feeling okay but get worse as my day goes on. The foggy feeling was my first sympton. I am a social drinker only, had one glass of wine 14 months ago and thought I drank a bottle. Since then my concentration is so bad and memory is even worse.

What is the date of your surgery?
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replied February 24th, 2010
Experienced User







Yes over the years I have looked into a (large) variety of possible reasons for my pains. For a long time I looked into facial pain, but through physiotherapy etc I got indications that the reason for my problems would be in my neck. Countless x-rays, scans, nothing showed up and nobody could give me an explanation. A good deal of (in hindsight unnecessary) dental work was done, and I even had surgery and a discography to see if there wasn't some hidden leak or damage of a disc, but nothing was found. I noticed that massages etc in the upper neck had some effect, but it never lasted. So I kept on getting indications to look at the upper-cervical area and I felt there was a mechanical reason for it all because moving my head would make it worse (or sometimes give sudden and amazing relief). It wasn't until I started looking into Eagle's Syndrome and had made the (above) 3D-reconstruction from a CT-scan that the whole thing started to make sense to me. Even the endless coughing, and constantly inflammated sinuses are explained. I am optimistic about the surgery, but cautious at the same time because I have been disappointed before. From literature:

A patient exhibiting the symptoms associated with Eagle’s syndrome may consult their family physician or an otolaryngologist, a neurologist, a surgeon (neurosurgeon, maxillofacial or oral surgeon), a dentist or even a psychiatrist in order to be diagnosed. Persistent pain and other symptoms could aggravate the psychological state of a patient. By the time the syndrome is actually diagnosed, many patients have already visited some of these doctors, who have unsuccessfully tried to treat their symptoms. This is quite understandable considering that the clinical manifestations of Eagle’s syndrome resemble those of many other diseases. Consequently, it is quite difficult to make a correct diagnosis based solely on clinical manifestations. However, it is very important for physicians and dentists to include Eagle’s syndrome in their differential diagnosis when treating patients experiencing pain in the cervicofacial and cervicopharyngeal regions. The differential diagnosis includes:

- Head pain: migraine, cluster, chronic tension and cervicogenic headaches, caroticodynia, atypical facial pain, paroxysmal hemicrania.

- Facial pain: temporomandibular joint dysfunction, myofascial pain dysfunction syndrome, glossopharyngeal, trigeminal, superior laryngeal, occipital, pterygopalatine ganglion, intermediate nerve and geniculate neuralgias, clicking jaw, non-erupted or distorted third molar, faulty dental prostheses, salivary gland disease.

- Neck pain: degenerative disc disease, chronic laryngopharyngeal reflux.

- Ear nose and throat diseases: chronic tonsillitis, tonsillar calculi, spasm of the pharyngeal constrictor muscle, otitis, mastoiditis, fracture of the hyoid bone, pterygoid hamulus bursitis.

- Other diseases: psychosomatic diseases, foreign bodies, inflammatory and neoplastic processes in the oropharyngeal area, pharyngeal and base of tongue tumours, cervical arthritis, temporal arteritis, nuchal cellulitis and fibrositis, and neck-tongue syndrome. A granular cell tumor is rarely associated with Eagle’s syndrome.




I hope the charts above may give you some clues. I am not a doctor, but since you are still feeling these symptoms maybe I wouldn't let go of Eagle's Syndrome just yet. If they haven't been able to completely remove the SP the scenario below may perhaps still be possible. I have read a case report about someone who got relief from a second surgery to remove the remaining part of the SP, although I would imagine that to be (even more) rare.






Volumetric reconstruction. Internal jugular vein compression

Because currently there are more urgent cases unfortunately my surgery will only be in a few months; if only they knew what it feels like, not to mention how it has affected my life over the years. But for now I am happy it will take place, it took me a while to find the right ENT, and I hope I can soon stop my involuntary study in neurology (joke). At the same time, given your story, I of course have to hope that this surgery will give me the relief that I am hoping for.

Are you seeing your doctor again soon?
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replied February 25th, 2010
Here is a quick synopsis of what my treatments have been in the last year. My pain began in January, 2009 after I had fallen getting out of my husband's truck. I slipped on black ice and my fingers were caught up in the steering wheel. I broke my right ring finger very bad and had surgery to repair it with four screws. I did not hit my head. But coincidently, a short time later began experiencing this dull pain in the left side of my face. I thought I had just stressed myself out with working, therapy and life in general.

At first I thought it was my sinuses-off to the allergist I went. Nothing. Next I went to the ENT had a hearing test and CT Scan for my sinuses.
Nothing, except my hearing is over-sensitive.
Next, I went to the dentist thinking it was a tooth I had had root canal in years ago. The dentist sent me to a root canal specialist, from there I went to an oral surgeon and had the tooth removed. By now it was June and the pain was growing worse.

I was then referred to a facial pain specialist who began with a mouth piece and electrical stimulation treatments that pushed medicine into my face. 6 total treatments over 3 weeks time. Once that was done he tried to inject me with 2 shots-one above my left eyebrow and 1 in my temple area-with a medication that he said would 'shut down' that trigeminal nerve and reboot it. Hopefully it would work. Nothing.

Then I went to a neurologist who tested me for everything under the sun-lymes, lupus, MS, etc. I had a second brain MRI, MRA and bloodwork. I tried the anti-seizure drugs and anti inflammatory drugs but nothing gave me an relief. Back to the general dentist who made me another type of mouth piece.

Finally I went back to my regular physician who had been racking his brain through the whole year with me. He finally called another ENT and explained my condition. He is the one who suggested Eagle's. I had a CT Scan looking for the styloid and he then sent me to the larger hospital facility for a more definite diagnosis and treatment. And here we are today.

I agree, that you have to try it becuase if you don't then what else is there? I go back to my surgeon on March 4th. Have you ever read anything about when you should expect to feel relief? Is it instantly or can it come after a month or two? I really want to have hope.
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replied February 25th, 2010
Experienced User
Case reports
Thank you for your story, over the past year you have certainly gone through a lot. About finding relief after ES surgery I've read different stories; from what I've read people often get quick relief, but there are exceptions. Probably best to ask your doctor about this. From literature (about entrapment of the glossopharyngeal nerve in Eagle syndrome, and other articles about Eagle's Syndrome):



















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replied April 20th, 2010
Here I am ... jumping on the "train of pain". I am a 51 year old women that has been living a life of pain for 7 years. I have done exactly what all others have done ... tons of ENTs, TMJ (numerous sleep mouth guards), neuro, etc etc etc. Well ... in Feb, my TMJ dentist/doctor (that is all he does, TMJ) got a new x-ray machine. After leaving me sitting in the chair for 20 minutes, he came into the room and said, "I think you have Eagle Syndrome. I haven't seen it in 10 years. I have only seen it twice in my career. I am sorry I did not see it sooner." I have been seeing him for 3 years now. He tells me I need to see an ENT to confirm. Yeah after seeing 8 previous ENTS, that is what I wanted to do AGAIN. Went to my primary doctor and explained. He sent me to get ANOTHER CT scan. (I am surprised I don't have cancer from the CT and MRI scans I have had in 7 years of this CRAP/PAIN!!!) My primary doctor called me last Tues to say, "You do have this Eagle Syndrome and I want to send you to the Univeristy of Utah." Well now I have received a call from his assistant today saying, "Gosh we have to work with your insurance to go to the University because they aren't recognizing this Syndrome and also I can't find any ENTs at the Universtiy that knows of this syndrome." Great ... that just added more fuel to the depression I have. I have most all the symptoms. Pain in the throat in the tonsil area of my right side, pain in my right ear, hard time sleeping because can't find a position that doesn't cause me pain, pain in my bottom teeth on the right side, always wanting to clear my throat. Thought I would just put my thoughts out there. I pray that this is the answer and that I can find that mircle doctor.
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replied April 20th, 2010
I hope it is the answer for you. I feel bad for every person who has suffered so many years with such pain and no explanation. Keep the faith, that's easier to say than due, I know.
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replied April 21st, 2010
Today I started with the process of working with my insurance company on possibly paying for a surgery that no one even has heard of. My one shining light is that today my primary doctor''s assistant found an ENT in the area that has performed two of this surgery in just the last 3 months ... WOW ... is all I can say. I hope he is the savior doctor I have been praying for. I feel very blessed to hear so soon after FINALLY getting a possible diagnose, a doctor who has performed the surgery. Especially after reading so many in the blog saying they have a hard time finding a doctor that has heard of this syndrome and knows about the surgery. But I will have to say, I am trying to keep my spirits from getting TOO high to only be let down again all these years. Thanks for your time
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replied April 22nd, 2010
Hearing the symptoms makes me wonder if I suffer from eagles syndrome as well I have an appointment with a neurologist soon I'm wondering if I should bring up the possibility or eagles syndrome with him... I'll ask anyways just to be certain
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