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

General
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Thank you @Jules.

Yeah. I will get since medications. So, the ES causing TN or vice versa?
After ruling out ES and TN,I am planning to extract this tooth. Doing permanent crown for now in 2 weeks. If that doesn’t help, have to go for extraction.

And also have to try 4k$ tmj treatment as well. That’s very expensive for me. But really need some relief from this pain. Trying one by one.

Any of you feel pain or burning in throat, neck and jaw after talking for sometime? I have not been talking much since may. Yesterday I had to talk to few friends after a long time. After that, my throat, side of the neck and jaw was hurting very badly and burning. Took ibuprofen 400 yesterday. I feel like I am taking lots of ibuprofen which I know is very harmful. Is there anything else which could help?

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ES can cause TN, but TN can’t cause ES. There can be other causes of TN though, which is why the Neuro might want you to get an MRI done.
Lots of members have found that their ES pain is worse after talking alot. Other than ibuprofen, try icing your throat, or warmth. (most people find cold helps better, but I’ve always found heat best for me!) Other than that, some members have found they’ve been able to get lidocaine patches to stick on the throat which can help.

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@Isaiah_40_31,
Whether eagles specialist ENTs like Dr.Samji or Dr.Cognetti assess with cbct scan? I will call their office too. Do you know anyone assessed with cbct scan?
I am having my neurologist appointment today. I will ask them too if they can order ct.
Yesterday I got a call from neurologist office and they asked about my pain an symptoms. Then the staff said I should see some other doctor and put me on hold. I was like, I am waiting for this appointment for last 4 weeks and you are cancelling it now. She asked my PCP details and got some more information. She said they will get records from my PCP and I can come to my the appointment today. They didn’t cancel it. Initially they said I should meet another provider. Don’t know why they change and cancel schedule at the last minute. This happened to me earlier with an oral surgeon office for tmj Consultation.

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An update here. @Snapple2020, @Isaiah_40_31, @Jules, @blossom
I had a neurologist consultation today. Neurologist said, my pain area and symptoms doesn’t look like trigeminal neuralgia and looks more like tmj and muscles issue.

He wanted me to take a nerve medication and see if it helps with my pain. He said nerve might be pinched or inflamed. So he ordered MRI brain With and without contrast to check out if there is any issue on the trigeminal nerve. He doesn’t order any mri for the neck , though I have neck burning pain too. He said mri for neck(cervical spine) is not needed as I don’t have pain in the shoulders.

He prescribed carbamazepine 200mg. Half a tablet for one week at night and then full tablet after that.

Hope this medicine works for this burning pain. I haven’t had any nerve medicine before. He told me to immediately stop taking it if I get any side effects. He said to look for rashes and other side effects.

He ordered MRI just to check any issue in the nerve. He also said he is not suspecting any issue as my symptoms doesn’t match up with TN.
I asked him about eagles, he saw the notes from the ent in his system and he said,looks like ent already checked and he mentioned in the report as not. I am more into nerves and can’t say more about it. So he is of no help for eagles. I asked about ct scan. He said , neurologist mostly look into only mri. I show him my cbct scan and he said he don’t even know how to look those images. So, want me to take only mri brain with and without contrast. I haven’t taken contrast dye before. Is it very harmful? I have had mri for my knee before. Not with contrast.

Is contrast dye very harmful? What are the side effects for those? Does it cause any long term side effects?

I didn’t schedule mri yet. Sent my neurologist visit notes to my PCP and asked her opinion. Asked my PCP about eagles now. Yet to get response from her. I asked her if she recommend to do mri now to check for eagles.
But I am planning to try that medicine to see if it helps with the pain.
Anyone tried that medicine before?

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Hi Newuserhere,

As far as I know, no one has ever been diagnosed w/ ES from a cbct image. That doesn’t mean it can’t be done, but perhaps if you send what you have to Dr. Samji, Dr. Hackman &/or Dr. Cognetti for an opinion, one of them would order a CT scan for you for a better view of what’s going on.

I’m sorry for the runaround you got from the neurology ofc but am so glad they didn’t cancel your appt. ES can be seen in an MRI but it’s harder to diagnose because all the soft tissues show up, too, masking the styloid & stylohyoid ligaments to some degree. As far as dye goes, you’ll need to ask the MRI facility what kind of dye they use & then do a Google search for more specific info about that dye. There are some types of dye that can cause long-term problems for some people - those w/ gadolinium in them, in particular, so you may want to avoid that if possible.

My thoughts on the scan are that if it isn’t your TN that’s causing problems & all he looks at is your brain/head, he’ll miss other nerves that might be trapped or irritated in your neck. I guess what he’s ordered is probably standard procedure for situations like yours, but I don’t understand why he wouldn’t also look at your neck area to see what might be going on there. Hopefully your PCP will be willing to order a CT scan.

We do have members that have taken carbamazepine & it has helped them. I hope you get good results from it. If you are diagnosed w/ ES but your pain is well controlled w/ medication then you can put off surgery for awhile.

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Then you @Isaiah_40_31.

Yeah, I am still wondering why the neurologist is not ready to do the mri neck. I don’t know if I have chosen a wrong provider speciality. He did say that he focus only on nerves and mri.
I asked about glassopharynal neuralgia (spelling?) if my symptoms matches that. He replied that ent doctor will focus on GN and not him. So your ent would have checked for that too during his clinical Exam. This was his reply.

I asked about the lump in the neck and no response for that. He didn’t answer much for the neck part.

If we say mri with contrast, does it always mean dye as gadolinium or anything else used? What’s the side effect of that dye? So, considering the side effect, should I ask for the MRI without contrast only??I don’t know if the neurologist will accept that. He asked me if I had contrast before and I haven’t. So I don’t know how it will be and any side effects.

I will try the carbamazepine. I have been told about that it has many side effects. Neuro did be to immediately stop the medication if I see any side effects. He told me to look for skin rashes.

Do you think taking an mri with and without contrast help considering my situation? I don’t know if I really need that with dye.

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Hi Newuser,
I will continue to look for the study that indicates CT Scan as gold standard for diagnosis of ES. In the meantime, I found some interesting articles:


(Feb 2019)
I have also attached another that addresses use of different types of imaging used for diagnosis. There is a section on potential causes of ES I had never read before.
Its possible other docs can read your CBCT scans for consult but they would need to be sent in a format they can read. As you have already discovered, unless you have specialized software, it is unreadable. I recall even the oral health center having problems reading mine (and it was done there!) and what they finally did produce was not of very high quality. The screen shots I was provided did show segmented calcifications however the eventual CT scan I had and surgery showed it as solid and longer.
In the attached article, they did render some good 3D screen shots that show the styloid process. If you were able to render these type of images from yours, get them on a disk and mail, it might suffice for the start of a consult.
133-SilpiranjanMishra18711876.pdf (1.1 MB)
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Sorry the neurologist did not go as you had hoped. I was lucky to find a neurologist who also did injections into neck and skull re: migraines,etc which provided some good diagnostics about what kind of neuralgia’s were present. I suggest making calls to neurologists to see if they perform these kind of diagnostics. Cross them off the list if they don’t. Taking meds to calm down nerves may be helpful for you while you are trying to get this figured out. They have helped many on this list.
As for MRI and contrasts. MRI is used for specific purposes and usually only for viewing soft tissues. With contrast might show some scar tissue or ligament issues that could compress nerves. It could be used to rule in or out other issues. I have had several radiology scans with contrast. It makes you fell warm all over and seemed to clear quickly. Some people have reactions to it but they have medications to reverse those effects available immediately if it occurs. In the 5 years it took me to get my ES diagnosis, I had several MRI’s that showed nothing. Personally by doing it, it may not show anything supporting further imaging such as CT scan?

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Any doctor can order a CT. You just need to find one that will.
I ultimately got my PCP to do it but I had to pressure him and took in a recent peer-reviewed article which he ignored. Unfortunately you have to get aggressive.

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Thank you so much @Snapple2020, @Isaiah_40_31 for the link . Appreciate it.

I do have my cbct images in a disc and that was not viewable in my laptop as I don’t have that software. The ENT office tried that and they don’t have it too. I asked my tmj specialist to place that image in the cloud and got the cloud link. So it’s viewable online. I can send those links to the doctors who can check those images. Mine looks something like this. I got a screenshot here.

You are right with neurologists. I think I have chosen a wrong one. I did ask their office before scheduling an appointment if this neurologist see only seizure patients or any general neurologic conditions. They said he will see all patients. When I ask him yesterday whether my symptoms looks like glassopharynal neuralgia, he replied that he cannot say that and ent is the one who will look for it. Your ent would have checked that already. I was super confused with this reply. Ent never talk to me about neuralgia at all during my visits.

He said he will focus on trigeminal nerve and for sure trigeminal nerve will not cause any pain in the lower jaw under ear and neck. But still we can check through mri and see if it’s fine. This was his reply. Now I am thinking if I really need to get an mri with contrast.

You had many contrast MRIs. How old are you? Did you get any side effects? I am 34 and I am not sure if it’s related to age. I am worried about side effects of dye after and long term.

I mailed my PCP yesterday immediately after neuro consultation. I did say everything and asked her if she think I need to get this mri done. Also asked her about eagles. Do you think my symptoms comes under eagles and how do I confirm that.she didn’t reply anything yet. So I can’t expect more from her. I am due for annual physical and pap test. So I will be going to her in few weeks. I am planning to ask her in person when I am there. If she refuse, I don’t know how to be aggressive and say that I want some ct order. She will surely say to get the mri done first. I don’t know if I really needed this contrast mri when the neuro doesn’t feel mine doesn’t look like TN. I do understand that only mri imaging can rule out TN. Don’t know how to proceed further. I am postponing tmj treatment till I rule out other diagnosis. Also, the tooth issue has to be ruled out too. My dentist still believe all my symptoms are from that tooth and want me to try extraction to see if it helps. I had temporary crown on it 2 weeks back and it’s paining on that gum and tooth since then.its like sore, sharp pinch like pain. Getting the permanent crown next week. If that doesn’t help, i have to go for extraction. Before that , I am trying to rule out all other possible diagnosis. But nothing works out as I wish. You guys are awesome and thanks for the support. Really appreciate it. Thanks a ton. !
Screenshot_20201105-212742__01|334x500

Whether this imaging is helpful or 3D? I don’t know if it’s 3D. Does it look the same as you mentioned?

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Hi Newuserhere,

I’m sorry to say that your screenshot really doesn’t show much. The picture you sent of your cbct images earlier was much better.

I feel that what your neurologist said is wrong. The trigeminal nerve can cause pain in the lower jaw & especially the lower teeth & ear area but probably unlikely in your neck. It would be the accessory nerve that affects the neck. Both nerves are often irritated by ES.

We’ve had many forum members have teeth pulled unnecessarily because of tooth pain. The tooth removals did not stop the pain in their mouths. It wasn’t until their styloid(s) &/or calcified stylohyoid ligament(s) were removed that the pain stopped. As someone who’s had too many crowns, I can speak from experience that temporary crowns can be very uncomfortable. Getting the permanent crown on may help a lot.

I think your plan is good to talk to your PCP before setting up the MRI. My opinion is that it’s your body & your money, & if you want a CT scan to consider an ES diagnosis before getting the MRI, she should refer you for that. That is probably wishful thinking because doctors are often opinionated on that subject & also sometimes have certain protocols they have to follow before referring someone for a scan of any type so the person’s medical insurance will cover at least part of the cost. If she refuses, then try a different ENT doctor. I expect you have access to more than one in your area. Try to find someone who is a cancer specialist as those ENT docs are sometimes familiar w/ ES & are definitely familiar w/ doing surgery in the area of the neck where the styloids are.

Here are links to the two minute videos about the trigeminal & accessory nerves:

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Isaiah is giving you good information.
More than anything its important to get a doc who believes in you, has some knowledge or open mind about ES and does do what you ask. This recent screenshot is not helpful. Isaiah is the resident expert on those. Maybe she can help you create the ideal ones to take to your PCP to support your request. I took my screen shots of my CBCT in although the PCP really wasn’t very attentive to it. Probably because her really had no knowledge of Eagles. I did get what I wanted in the end though.
The ES I had combined with TN was a hornets nest of pain and muscle tension. All those tight muscles and ligaments respond to the pain and irritation making everything worse. In my case, the pain extended down my neck, into my shoulders and arms.
I just saw a book today in an article that may be worth looking at…its called “When Doctor’s Dont listen: How to avoid misdiagnoses and unnecessary tests”

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Thank you @Isaiah_40_31. Appreciate it.

The cloud link which I have has the 3d images and the screenshot I sent is a part of it. You need to choose something from the drop-down, left or right and the images changes. I will try to send a better screenshot or video of it.

As Sbapple2020 said , which one do you recommend me to take to my PCP , so that she can talk about it. She didn’t reply to my recent question too about eagles. I did send her an email after the neurologist visit and asked about eagles. No reply at all. I am planning to go to her office for physical and ask her about eagles. I don’t know if she really knows about it. She is in the practice for last 6 years. Don’t know if she knows about ES.

The neurologist didn’t talk about accessory nerve. I didn’t know about it either. I didn’t ask her. I asked about glassopharynal neuralgia only. She said it’s not her part and ent will check that.

I am getting my permanent crown tomorrow. My dentist told me yesterday that we can try permanent crown and see if my symptoms and sore gum, tooth pain resolves. If not, he is telling me to try extraction. I am just holding off for extraction. Have bad burning pain in lower jaw under ear and neck.

I did take carbamazepine half a tablet for last 4 days. Doesn’t make a change in the pain yet. But I feel some itchiness after taking the tablet for sometime. Asked the neurologist about it. He said to watch the itchiness for few days. If it increases, told me to stop the medicine. I don’t know if mild itchiness is okay.

I didn’t schedule the mri yet. I am confused if I should try someway to get ct first or mri.
And the neurologist said, if mri doesn’t show anything, it must be your tmj and muscle issue. He said, my neck is so tight(upper trap) during the clinical evaluation. He said muscles are tight. I do feel very tightness in the neck and upper shoulder , upper trap. The base of the neck and upper back is so tight and stiff. He said it’s because of muscle tightness. Told me to do some neck exercises Along with warm compress.

I don’t know if muscle tightness is causing all these, also the tmj. Tmj specialist said the same about muscles. Does eagles related to muscle tension or tightness or vice versa? I feel all the muscles in the neck, jaw , shoulder is tight, stiff, burning.

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Thank you @Snapple2020.
I will ask @Isaiah_40_31 for the ideal one to take to my PCP and talk about eagles. I am sure she doesn’t know much about eagles. She didn’t reply not even once to my eagles query. I don’t know if she agree to order ct scan.

Talking about eagles and TN, I don’t know if I have TN. Neuro didn’t suspect TN at all. He said if the mri doesn’t show anything, mine would be tmj or muscle issues. He did check my neck and said it’s so tight. It’s so tight to touch in the upper trap,I.e base of neck and upper back, upper shoulders. It’s so tight and stiff. He said upper trap should not be so tight like this. Gave me few neck exercises along with warm compress. I am yet to try those.
I do have pain radiated from lower jaw under ear to side of the neck. Now it radiates to the base of the neck till collarbone and upper shoulder. It’s so burning , tight.

Don’t know if this burning and tightness is because of eagles or muscle tightness.are both related?

Neuro asked if I have pain in the arms. I didn’t have any pain in the arm on that day and said no. So he didn’t order neck mri. He said only if I have pain in the arms, he will cervical mri. So he didn’t order neck mri.

Since yesterday, I feel burning pain in the upper shoulder, shoulder blade and upper trap area. It’s so tight to touch. I have to try warm compress. Didn’t do it for last 2 weeks. I think I have to do this religiously everyday.

I didn’t schedule the mri yet. I don’t know if I should get mri first. I am just concerned about the contrast. I will ask my PCP if she can order ct scan. I don’t know if she will. If not, have to try another ent which is very difficult to get in.

I am taking carbamazepine for last 4 days and that doesn’t make a difference yet. How long does it take to see a difference in the pain and symptoms after this medicine? The neuro said, if it’s TN, I would feel some relief after this medicine. He said if it doesn’t make a difference, then it’s not TN. I don’t know how long does it take to see a difference.

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Hi Newuserhere,

You sent the image below earlier in this text thread. I marked w/ arrows where I thought your segmented styloid is, but I could be wrong. This is a good one to show your PCP. It does sound like your PCP doesn’t know about ES, & maybe she hasn’t responded to you because she’s doing some research to learn about it. We have links to published research articles. There is a tab for some of them under the General heading on the home page. You could print one or more to give to your PCP when you have your physical.

As far as your tight muscles go, when you have nerve irritation, your muscles can tense up as a response but the reverse is also true, if you have tense muscles, your nerves can become trapped & cause pain so it’s a “which came first, the chicken or the egg” question. You could ask your PCP for a referral for physical therapy to help w/ your neck & shoulder muscles. I suspect getting those muscles to relax will help at least some of your pain to go away or minimize. Getting a diagnostic CT scan for ES would also be helpful, but perhaps the PT would help enough that you don’t need to worry about ES for the time being.

I’m glad you’re waiting on the MRI. You can ask your PCP about the dye used & what she knows about short & long-term side effects. You can also ask her what she knows about Carbamazepine & how long it might take to help you. Some of those medications have to build up in your body before working & that can take a week to a month depending on the dose you’re taking.

Your tooth may be sore for a few days after getting your crown. Please do let us know how you feel once it’s been on for several days.

Here’s a link to a list of articles that may be helpful for you to share w/ your doctor:

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Thank you so much @Isaiah_40_31 for the inputs and the link. I really appreciate it. It means a lot to me.

I will surely ask my PCP about Eagles. I am very sure that she is not aware of it. No results from her since September for that query about eagles.

My PCP did refer me to PT on July for my jaw pain and neck pain. She sent me to PT to try dry needling as she said my neck muscles are so tight.
I went to PT who specializes in TMJ. I went for 3 weeks, 6 sessions and it makes my pain very worse. So I didn’t go to the PT after that. Also, my tooth issue was not confirmed and I had root canal. So didn’t do PT after that. I did PT for 3 weeks in August. Didn’t go to PT after that. Not doing going exercises too as I am worried that it will affect the area more and cause more issue if it’s TN or eagles. Scared to do without diagnosis. I also had one session of dry needling on massaster muscle and that makes it more worse. Pt did say that it will take time to heal. I am giving it sometime and see how it goes.
I m doing my permanent crown next week. Will ask the dentist if it’s ok to do PT after that. Dentist told me to hold on to PT since root canal. I didn’t do any exercises at home too.

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@Isaiah_40_31, @Snapple2020, @Jules , just an update here.

I did get my permanent crown today. The dentist said that we just tried with crown and let’s see if it helps. Told me to wait for 2 or 3 weeks and see if it helps. If I still have pain or discomfort, he said to remove the tooth. He said, that tooth fracture could be the reason for my lower jaw pain under ear and neck. He don’t want me to do physical therapy and tmj treatment. He told me not to spend money on night guards. He said to try this extraction first and see if it helps. If it doesn’t improve after extraction, you can rule out this tooth and move on to tmj or anything else.

I am taking the nerve medicine now to see if it helps. No difference yet. Hope it takes time. I didn’t schedule the mri yet. I don’t know how to proceed further. He told me few weeks back that tmj would be the problem and not this tooth #30. But today he said tmj would not be the issue and he feel that it could be the tooth fracture. So telling me to address that first. Kind of confusing.

But you spent 1500$ on crown and lets see if helps. If it doesn’t , we have to extract. He is also telling that there is a slight possibility that tooth extraction might not help in the symptoms and you might still have the same pain. I asked him that it’s been 6 months and nothing shown up in x-ray. How do you say for sure to extract my tooth? He said that I might have a small fracture that happened and causing symptoms. It might expand a lot in the coming days and show up in x-ray later.

I don’t know if thats the real reason for my pain. I don’t want to pull the tooth unnecessarily. I already done my wisdom tooth. It’s wisdom tooth, so anyway it has to go off someday. But this lower molar, if I extract, I have to think about implant. I don’t know if i am heading in the right direction.

Got a question @Isaiah_40_31. You mentioned that trying PT will help the symptoms for time being and no need to worry about ES. Is that possible? I thought this has to be addressed and resolved sooner for eagles. Will it not cause any further damage or need to be treated sooner? Thanks for changing my understanding on this. Appreciate it.

I am planning to see if this permanent crown makes any difference. I did say my dentist that my pain is on lower jaw under ear and side of the neck. He said,lower tooth issues will always impact the jaw and neck. I really want to see a light at the end of this tunnel.

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Hi Newuserhere,

As far as ES symptoms go, we encourage people to have surgery if their symptoms are impacting their lives negatively. If, however, your symptoms are easily managed by PT or medication & are a nuisance but not life altering, then it can be worthwhile waiting until the symptoms get bad enough that surgery is the best choice. ES surgery is major surgery & takes several months for full recovery & can take up to a year for nerves to heal. It is not to be taken lightly.

I hope your PCP is willing to refer you for a CT scan. Unfortunately, many radiologists know ES diagnosis as only being for elongated styloids so will misdiagnose, as not ES, a case where the stylohyoid ligament(s) is/are calcified or a styloid process is fractured & is in more than one piece. These two scenarios can both also cause ES symptoms. That’s one reason we recommend sending a CT scan to a specialist who knows ES well for a second opinion.

I hope this explanation makes things more clear for you.

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If this crown doesn’t work, unless he’s sure he can see a fracture clearly in the tooth, then I’d hold off having it removed…I think you’ve been very unfortunate that nobody you’ve seen seems to be particularly helpful or knowledgeable about not just ES but nerves too- Trigeminal Neuralgia can cause pain in individual teeth & the lower jaw, but I don’t know why your Neurologist didn’t consider this. And ES can cause TN if that nerve is compressed. It does sound like you’re being sent round in circles, so I would try really hard to get a CT done to rule ES in or out before you start pulling teeth! & the nerve pain medications can take a few weeks to work so might not help straight away, plus the crown you had done could well have aggravated things if it is TN…

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I think Jules and Isaiah giving you good advice and hopefully clarity.

I’m not so sure about this dentist. I wouldn’t be pulling teeth yet either until you rule out ES.
I am very leary about him saying that tooth fracture could be the cause of lower jaw pain under ear and neck. You are definately going around in circles with all the providers. I hope you can take the info Isaiah provided to your PCP and obtain a CT scan so you can stop going in circles with no definitive answers.

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