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. I am trying to get a provider to order a ct scan. I can’t directly contact a provider out of state for a phone consult without any images. I think that would be water if their time. Have to get a ct and contacting them over phone would be better.

It all started with lower jaw pain exactly under ear. It started one day when I was chewing my food more than usual. Immediately after the meal, I feel some soreness in the molars. Next day heard a pop in the jaw and this pain under ear in the lower jaw started in may. After a month of this pain, neck pain started in July. Still the same pain. My PCP is the one who is pushing me to go to a neurologist. That’s why asked questions about neurologist and if they diagnose eagles or not.

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It won’t hurt to see a neurologist, as they might be able to give you pain relief, & you might be lucky & find someone who knows about ES. But to go forward with any treatment other than medication I think it would be most helpful to rule ES in or out first, that’s all. :grinning:

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Thank you. Appreciate it @Jules.
I just called a neurologist office today whom my PCP referred. The next available appointment is third week of November. They told me to call back my PCP to ask if she can refer to any other neurologist. I have to check with my PCP again for another referral.

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Hi Newuserhere,

When you call a medical office for an appointment & can’t get one scheduled soon, you should ask to be put on a cancellation list. Many of our members have moved their appointment dates to much sooner by being called to fill a cancelled appointment.

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Got a question. Reg sleeping position.

My pain is in the right lower jaw under ear and side of the neck. I sleep straight most of the time. But I find myself sleeping on the sides during sleep. When I lie down on right or left side, the neck hurts. I wake up from sleep with a sharp or pinch like pain. Then I realise I am on my sides and will lie back to straight position.

Is this normal? How do you all manage to sleep? Does it hurt during sleep? I get burning pain too. In the jaw under ear and neck. Kinda feel like some big blister or wound present inside and hurting me. I feel more pain if I am sleeping on left side(right side up). If I don’t take any muscle relaxers or NSAIDs, I couldn’t sleep without waking up with this pain. The medicine sometimes helps me to sleep through. Been taking those medicine for a long time. Don’t want to take more though.

Do we need to follow any sleeping position ? Any inputs on this please.

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I slept semi-upright, which helped alot, so used several pillow & a wedge pillow. There’s been some discussions about it recently; it was suggested having extra pillows down your side to keep you on your side, but maybe you could have one each side of you so you’re partly on your back but can’t fully go completely on your side? Worth experimenting with! I also used a V shaped orthopaedic pillow, for me it worked well as it seemed to keep the pressure off the sides of the neck.
I was prescribed Amitriptyline for nerve pain form ES, that helped me sleep too!

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@Jules, @Snapple2020, @blossom, @Isaiah_40_31
I had my appointment with my ent today. The same ent whom I saw in June since this issue started. I told them all the history happened after June and new symptoms. I have taken my cbct scan with me as well and the report which I personally got from a radiologist (from another country). Also the neck ultrasound report. Tmj specialist clinical notes as well.

But they couldn’t open the cbct disc images. They said it’s not supported with their software. My bad. I would have installed some software in my laptop and would have taken that. I tried to open those in my laptop few weeks back and doesn’t work. So I didn’t try after that. I would have tried some software and taken those cd images to view in my device.

But the staff said my report will help as disc is not working. The ent came in and started talking about tmj and physical therapy. I told him that I want to know about eagles and how to rule that out. Since most of my symptoms match with that. He checked my neck , ear and throat. Said nothing abnormal. He told me to try physical therapy for tmj and muscle tension.
I asked about my styloids length and it mentioned like segmented. He said as per report, it’s mentioned within limits and normal. I don’t even know if my report is correct or not since I got the report online from another country. I trust them though. I was hoping he will see my cbct images.

Then he said , he will do intra oral just to make sure. He put his finger inside the mouth on right side and I felt like gag and choking. It was so discomfort and I was like choking hard. But it doesn’t pain much. Just discomfort for the finger to put in the throat. Then he said I don’t have eagles as people with eagles with this intra oral thing will jump out of chair and it will give more pain.

I asked him to get an order for CT neck and he said, I don’t want that and he will not suggest too. He also told me not to take sinus CT as well. He said the cbct report shows sinus normal and no need for CT. Try physical therapy and see if it improves. If not, we will see further later. This was his response.

Does the intra oral test really helps to identify eagles? Does it cause discomfort and soreness in that spot? Any inputs on that please.

I still feel some discomfort in my right side throat where he pushed his finger even after few hours now. But not paining, discomfort and burning sensation. I asked why my neck is stiff and tight, constant feel of something in throat. His reply was tmj and muscles.

I forgot to tell him about my wisdom tooth stiches today and I hope it’s ok to do intra oral exam with that. He pushed mainly on the lower jaw thorat area only. So I didn’t talk about this stitches.

He also checked my ears and did a hearing screener as well. I have complained about Ringing sound and sore pain in ear. Hearing was fine . He gave referral to PT and want me to try it.

I kept on asking about eagles and his reply was only tmj and not eagles. But looks like he knows about eagles and he didn’t totally dismiss me when I ask about eagles. He tried to explain and said you don’t look like having those. I am back to square one now. Don’t know whom to see further for the diagnosis. Really tired and frustrating…

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Well, I don’t know about the intra-oral pressing triggering symptoms. Others can respond to that. That was not the case with me. My pain was more under the ear and neck like you. The same muscle tightness and TMJ.
I am not surprised that dry needling and other PT worsened your symptoms. The same happened to me at times when I was in a big pain flair. Muscleskelatal and tmj can easily be present with Eagles and can worsen with Eagles. May of us have been down this road and dismissed back to PT. Right before I got my CT scan, I had been doing all kinds of PT for a good 1.5 years before the pain became unbearable.

This is just my take…I don’t ever put stock in any radiology report. Most surgeons who are experts in certain body parts always want to see the scan in person as radiologist are generalists and arent experts in specific medical conditions. The fact you have “segments” is an indicator to evaluate further. I had these same segments on my CBCT and the oral health radiologist didn’t measure the same as ES surgeon and also thought it was within normal limits. As it turns out it was not segmented at all and is was longer than the 3.2cm initially measured on the CT scan of neck
Your ENT doc is not listening and doesn’t appear to want to proceed with further evaluation for Eagles. Its time to move on to another doc who has experience with Eagles however many wont see you unless you have the CT scan first. Don’t give up. Keep fighting to get that CT scan of the neck. I had to press really hard and get aggressive to get one and my PCP thought it was tmj.
I hate to suggest this but going to an emergency room in agony might get a CT scan?

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Mine would hurt if pressed on either from inside the mouth or externally, but not agony- it would be more painful later on than at the time. I think the doctor was expecting me to be in more pain too. I do agree with Snapple that to rule out ES you would have to get a CT somehow; it might be worth trying a doctor on out list & see if they’ll send you for a CT, & getting that evaluated specifically for ES. It makes you wonder if the report you’ve had says segmented SPs if that means the styloid & then the stylohyoid ligament is calcified too- there may be other calcifications on the ligament which should be looked for too.
So sorry that he was not more helpful, it’s so frustrating after the wait too.
Hugs to you :hugs:

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Thank you @Snapple2020.
I will check with another ent or my PCP for the ct neck scan. I have a neurologist appointment coming up. I am not sure if the neurologist will order ct scan. I am going to ask him too about eagles syndrome. Hope he know something about it.

I read here that few got their diagnosis from a neurologist. Hope they can order me imaging.

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Thanks @Jules. I asked my ent about that segmented thing.
I show him the report and asked what does it mean. He didn’t see the images though. They couldn’t open the disc on their system.
He said nothing about segmented thing. He said it’s mentioned like normal limits. Nothing more to talk about it.

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An update here @Jules, @Isaiah_40_31, @Snapple2020.

I have contacted the tmj specialist office again and asked them to upload my cbct images in cloud platform. So that I can view the images in there and send it to other providers as well.

During my ent visit, the staff couldn’t open my disc and view the images. Ent saw my report only. Tmj specialist uploaded the images in the cloud and I sent that to ent.

He replied to me as , I do think that you have eagles syndrome. Just one line reply. I didn’t talk to them yet. I don’t know how to proceed further with him?

Should I ask for CT scan with him? Or referral to another ent who see eagles patients?

I have the images in the cloud platform. I am not able to download it. I don’t know if I can give those details here. So if someone wants to take a look.

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An update. I just got a line to talk to the staff of ent. Couldn’t catch them earlier because of hurricane today in Atlanta. They were not in office earlier.

The staff just called me now and said doctor did a typo and misinterpreted the reply. He didn’t see any findings related to eagles. The staff apologize for the mistake. I was like crazy. Couldn’t talk further. They can not understand how I feel with that single line reply. The staff told me that you don’t have anything further from our office.

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How frustrating! To be up & down like that! Not at all helpful…I guess your choices are either to see if you can get copies of the cbct, & send that to one of the very experienced ES doctors, like Dr Samji or Dr Cognetti, & have a phone consult to get their opinion. ( I guess you would have to ring the office first to see if they would assess you based on a CBCT). That way you could put your mind at rest. The only alternatives are to go ahead with the treatment for TMJD, unless there’s any way of getting a CT…

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Newuserhere,

I’m really sorry you got that sort of treatment from the ENT you saw. That’s really terrible.

Doing what Jules suggested is a good option. Just wondering if you have you asked your PCP if (s)he would be willing to refer you for a diagnostic CT for ES? It’s worth a try if you haven’t. Alternatively, you can try another ENT office for a second opinion & request a CT scan from them.

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Thank you @Jules.
I will check with their office. I feel like stuck with everything without proper diagnosis for this pain /symptoms. Dentist think either tmj or tooth fracture in lower molar or eagles. I did root canal and doing crown on that tooth. He said , if the pain doesn’t improve after permanent crown, he told me to try extraction to see if it helps my symptoms.

I had temporary crown last week and in very sore pain in that tooth and gum since then. Don’t know if a tooth root fracture will cause these issues.

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Thank you @Isaiah_40_31.

I did ask my PCP earlier in august when I heard this word eagles from my dentist.I told her that my dentist suspect this and I want to know the diagnosis for that. But she didn’t reply anything for that and told me to see neurologist to rule out trigeminal neuralgia.

I asked her again last month too. She didnt reply and want me to check neurologist first. I have neurologist appointment next week. So I am plt tk contact pcp after that appointment and will ask for eagles diagnosis. I think, then she will help me. Because she didn’t respond at all to my message about eagles since I said that my dentist suspect that. She didn’t mind about it.
Now after neurologist appointment, I can ask her about other diagnosis. I do understand that’s also depends on what the neurologist going to say.
And this is not the neurologist she referred to. I self referred to this provider. The providers(2) whom she referred doesn’t have opening till Jan. So I did a research and got one neurologist based on reviews. Hope my PCP will be ok with that neurologist opinion.

Based on this consultation, I will contact pcp again. Whether they can order ct for eagles? Or it should come from ent only?

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Hi Newuserhere,

It’s your choice when it comes to the doctors you choose to see so your PCP should have no argument w/ you going to someone who had a sooner appointment available over someone you had to wait till Jan. to see. You should ask the neurologist to send the referral for the CT while you’re there. If (s)he declines then definitely follow-up with your PCP afterward since you will have complied w/ all of her requests. Any doctor can order a CT scan.

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Thank you @Isaiah_40_31.

I didn’t think about neurologist can order ct imaging. I will ask if they can do it. I am going to ask them about neuralgia or any nerve issue. Hope she know a little about eagles as well. I have heard they mostly order mri only. If they order me mri for further diagnosis, I will ask them if they can add ct too.

I try to request if they can send ct order even if she feel that mri is not required for my diagnosis.

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Getting an MRI will help rule out other things, so not a bad idea to go with that if you’re offered it; the more things that are ruled out, the more it strengthens your case to get ES ruled out too! Don’t get your hopes up that the Neuro will know about ES; many doctors don’t or can be skeptical about it. But if your PCP has made a referral based on possible TN, that’s fine, because ES can be a cause of TN, & you could use this appt to ask about nerve pain medications. Even if the pain is caused by the tooth & not ES, you could be prescribed medication like Gabapentin or Amitriptyline, which could be helpful for you.

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