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Eagle Syndrome - Online Support Group

New here. How to diagnose if I have eagle syndrome. Whom to see? ENT or TMJ specialist or neurologist?

Hi,
New member here.
My symptoms are,
Right lower jaw pain under ear since may.
Mild Swelling in the lower jaw since may.
Ear fullness and clogged since may
Neck pain.side of the neck mild swelling and a small lump since July.
Top side of the head above ear is very sore to touch since July.
Ringing and buzzing sound in the ear since July.some soft sound while lying down.
Feeling of something stuck in throat since August.
Side of the neck is so tight and stiff since august.
The pain in the lower jaw under ear doesn’t change since may. Still the same symptoms. It’s like sore and burning pain Continuously. No change in this symptom irrespective of taking NSAIDs or muscle relaxers. Been to different doctors.
Been to ENT to check ear infection. No infection.

Went to dentist. He told me to extract the upper wisdom tooth and did it in July. He said either upper wisdom tooth or a suspected crack /fracture in my lower first molar is causing these symptoms. I went to Endodontist and checked the crack. No tooth fracture and did a root canal. Still the same symptoms after wisdom tooth removal and root canal on lower molar. So the dentist telling me to check it with tmj specialist to check the jaw issue and tmj. He also want me to check about eagle syndrome. He said, he is not sure about it with my pan xray. He wants me to check with tmd specialist. Whether tmjd specialist can diagnose eagle syndrome? Please help me with inputs.

My symptoms started since may after I chew some meal more than usual. Immediately I felt soreness in the molars after the meal. Next day I heard a big pop in the jaw and this pain, Swelling started. I would like to know if this looks like eagle syndrome or TMJD. Any thoughts from anyone here?
how to add pan x-ray in the post? I have pan xray taken. Is it possible to view styloids in pan xray? Please help. I feel so helpless. Have the same pain since may and no definite diagnosis yet irrespective of multiple doctor visits. It’s very frustrating.

Hi Newuserhere, & welcome to the site!
I see that you’ve had quite a few detailed replies from the other post, so won’t repeat all that!
My ES symptoms were similar to yours with jaw & tooth pain, ear aches & fullness. My styloids were clear on the panoramic xray I had, but had a CT with contrast later to check for vascular ES. If you suspect ES as the others have said it would be best to get a CT through either your PCP or through a referral to a doctor with ES experience, have a look at the doctors list.
I hope you can get some answers soon.

Thank you for the response.
My PCP is not ordering me the CT scan. He told me that mine looks like neuralgia and referred me to neurologist. I went to an ENT and he ordered sinus CT scan. I don’t know if sinus ct scan will show the styloid. I didn’t get the proper provider yet.

My dentist telling me to see a tmj specialist and see if he can diagnose my issue is tmjd or eagle Syndrome. I don’t know if tmj specialist dentist can find it out.

Did your panaromic shows the styloids? I am attaching mine. Please let me know if you could see something.

I can’t see obvious styloids on them, but depending on the angle they can’t always be seen…if they grew at an angle behinh the jaw bone for example, but usually you’d see them beside it; we’re not experts/ doctors though!
Maybe the neurologist when you see them will be able to order a CT, although they usually ask for MRIs which don’t show the styloids as well. I doubt a sinus CT would show down far enough to see the styloids- you’d need head & neck down to the hyoid bone- a shame, while you’re exposing yourself to all this radiation!
If the TMJD expert is familiar with ES, then they could assess you for ES, but the cynic in me wonders if they would as it’s in their interest to treat you for TMJD?
I would keep the neuro appt though as many members have nerve pain from ES, so you may be able to get some medication to help, & may even strike lucky with one who’s familiar with ES! ES is a known cause of GPN, so they may be aware of it…

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Hi Newuserhere,

I’ve annotated 1 pic w/ what could be your styloids but what I’ve noted could also be part of your jaw. As Jules said, we’re not doctors so if what we see isn’t clear to us, we can only speculate. If these are your styloids, they certainly could be elongated as they appear to extend beyond the jaw bone on each side.

Thank you for your reply. Appreciate it.

I don’t know if it’s my jaw bone.
I am attaching the pan xray which I have taken last year 2019. Can you see the elongated styloid in this x-ray too?

Would appreciate your help.

Thank you so much. Appreciate it.
Whether CBCT scan for tmjd diagnosis will help to find the styloids or calcified stylohoids?
I have tmj specialist appointment next week and they said they will do cbct.

Should still show them, some members have been able to see their styloids in these images.

Id hang in there and keep demanding the CT scan. They did not see (or note) on the original pano views my calcifications back in 2015. It was only after 5 years of pain and a neurologist whom I was lucky enough to meet that mentioned the possibility of Eagles to me. I then had dental radiologists (at oral health center at major medical center) take a second look at the pano. They were able to take a look at the digital films in 3d from the side of the neck and sent me screen shots of the calcified ligaments. Even then they did not think much of the finding and often dental radiologists minimize or ignore the findings. Even the head of the department who sees patients for jaw pain and TMJ blew it off as nothing even after sending me the screen shots. I took the screen shots and a recent study that showed the CT Scan as the gold standard of diagnosing Eagles to my PCP doc. I told him the neurologist suggested the possible ES diagnosis and asked him to order CT. At the time, I was also in extreme pain even after nerve blocks in my neck and needed pain meds as tramadol not working. I had to really bend his arm to get both. I made him correct the chart later as he wrote that he was just basically patronizing me and thought it was just TMJ! That was even with screen shots and a neurologist suggesting it? I had the CT scan 2 days later which confirmed ES diagnosis. he sent me the results with “no comments”. I proved that SOB wrong. As a side note, my surgeon used the diagnostic code as glossapharegeal neuralgia. I would suspect a sinus CT will not show the styloids. The key will be to finding a doctor who is willing to order the CT scan of neck that you need. Keep hammering on your PCP or get a new one. It may takes months to see other specialists whom might order the right scan.

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Thank you @Jules. Do you mean cbct images? I am having the tmj specialist appointment this week. Hope they will do cbct. I have asked them to do cbct. Since they will not do it during the first visit.

Thank you @Snapple2020. Appreciate it.

You are right. My PCP is not ready to order a ct scan and want me to try PT for few more months for my tmjd. I have constant burning pain in the lower jaw under ear and side of the neck. My dentist is the one who suspect it could be tmjd or eagles.

He want me to go to a tmj specialist first and rule out/check if it’s tmjd and he said the tmjd specialist can see if it’s eagles or not. I don’t know if they know about it.

I asked my PCP about the dentist thoughts about eagles and asked whom should I meet or any imaging to be done. He replied as , go see a neurologist as this could be trigeminal neuralgia. So, I am very confused now.

I have tmj specialist appointment this week which I got few weeks back. I don’t want to cancel that now. Hoping to get a cbct scan there and see if they identify styloids.

I am in Atlanta , GA. I don’t have any ent doctors in Atlanta who diagnose eagles. Hope any ent will order for CT scan and check if it’s eagles. Is that so or I should go only to the ENT who diagnose eagles?

Well, I also have TMJ and trigeminal neuralgia and dealing with it for years until Eagles pushed me over the edge in 2015. Which came first is hard to know. I do know they all contribute to the overall pain. Dont cancel TMJ specialist, read up as much as you can on Eagles to prepare your arguments to support CT scan. Try and find neurologist that specializes in nerve blocks and injections and get on schedule - you can call around to find out who does them. Those are the ones who are more familiar with this. Others on the blog can help you find a ENT doc who is experienced in your area. We have a pretty good list put together by patient reviews. This may take multiple specialists to get diagnosis and management. Do all the above and get them scheduled. It took me about 3 months to get into neurologist but when I did, it was worth as he recognized the symptoms of ES. I had the same pain below the ear. Injections of sterioids and nerve block calmed it down. Im now getting botox in temples as those muscles are tight as a drum (I think from trigeminal nerve bundle). This can be overwhelming at first.

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Hi Newuserhere,

Many of the ES doctors on our list are ENT cancer specialists. There are a few neurologists/neurology surgeons & maxillofacial surgeons who are also familiar w/ ES & are willing to diagnose & do surgery to remove the styloids. Hopefully you can find someone in one of those categories in your area. If not, you can try Dr. Petruzzelli in Savannah. He might be willing to look at your scans once you have them done & give you an opinion via video conference call so you don’t have to travel to his office. Several of the doctors on our list do that. There is a fee but often insurance will help pay for that just as though it was an office visit.

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Thank you @Snapple2020.
I will not cancel tmj specialist appointment this week. Not scheduled any other appointments now. Only tmj this week.

Tmj specialist will not do CT scan right. They will do only cbct scan. Can I ask them to order ct for neck from them? I don’t know if he will agree to it. They might say it’s not their area of expertise.

So the pain the ear indicates neuralgia? I have constant severe burning pain in the jaw under earlobe and side of the neck. I have swelling in the lower jaw and side of the neck. Mild swelling. I have always feel like something stuck in throat. Neck and throat is so tight and stiff. Ringing and soft music sound in ears. I have tried ibuprofen,medrol pack,tramadol,norco, muscle relaxers. Nothing helps.

I don’t know what are the other symptoms of neuralgia. Whether neurologist diagnose eagles? I was not aware of that. I thought they will order mri of head of I go in for a visit. And mri doesn’t show up eagles right?

Don’t know how to proceed further. Have to go back to same ent whom I visited in June for this jaw pain. He evaluated me for sinus(did Endo) infection and ear infection, ordered CT sinus scan. They asking me to come for a follow-up to check and reevaluate sinus again using Endo. I didn’t have sinus infection. If I go to the same ent, I am not sure if he will check for eagles.

Thank you @Isaiah_40_31. Appreciate it.
I didn’t know that neurologist will diagnose eagles. I thought I should go to ent for eagles and neurologist to check or for neuralgia.

I have to search around to know any neurologist to diagnose eagles. There is a chance for them to say that it’s not their expertise right? Don’t want to waste time to get that answer. Already been to many doctor offices in the past 4 months:( feel so bad and frustrated.

Hi Newuserhere,

ES can be seen on a CBCT scan (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3943457/). Since you’re being evaluated for TMJ, the scan will possibly show the styloid as the styloid starts at the base of the skull & is ideally angled toward the hyoid bone. As you can see in the picture below, the styloid process sits behind & below the jaw joint. If yours are elongated, they will most likely show up in the scan you’ll be getting. Some TMJ docs are familiar w/ ES & some aren’t so it’s worth commenting that you’re having symptoms that line up w/ ES and ask if he can do the scan such that your styloids are visible. He may or may not be willing to comply.

Even if you can see the styloids in the CBCT scan, you will still need a regular CT scan for official diagnosis. You can request that your ENT order one when you go for your follow-up. He should be willing just on the basis of wanting to rule it out as the cause of your symptoms. Many of our members have found they need to be politely firm with their doctors get the testing they need.

Thank you so much @Isaiah_40_31.

In that case, can I skip this cbct scan? If only regular ct scan is required for the diagnosis.
I don’t know if cbct also gives more radiation. I understand that benefits outweigh the radiation risk though.

Looks like I need to take more scans like mri(if I go to neurologist), cbct, ct with contrast to get to know what’s happening.

Hi Newuserhere,

You won’t need all those scans. I would start with a CT if you can get that first & skip the CBCT. Unless you’re having vascular symptoms (which I don’t recall if you are i.e. pulsatile tinnitus, migraines, vertigo, visual changes & the like), you won’t need to have a CT scan with contrast. If you get an MRI in addition to the CT, it will show the vascular tissues & may be able to determine if there is vascular compression if you suspect that, but it won’t be very helpful in diagnosing ES. You may not even need the MRI if your CT shows you have ES.

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ES is one cause of Trigeminal Neuralgia which causes pain along the jaw & teeth from it’s lower branch, pain to the upper teeth from the middle branch & to the temple & scalp from the upoer branch. ES is a known cause of Glossopharyngeal Neuralgia too which can cause pain in the ears & teeth…a Neuro can help with prescribing nerve pain meds which might help if you’ve not tried those- like Gabapentin, Carbamazapine, Amitriptyline etc. So they might be able to help you if you can get a referral, but whether they are aware of ES is another matter! There are other causes of both these neuralgias though- for example tight muscles can trap the nerves & cause pain, this could be possible with TMJD too…
If you are able to get a CT, that’s best, but if you can’t & they do the CBCT as long as they go a bit below the jaw I’d hope it shows ES.

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