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

Good info explained here above. TMJ specialist may be able to order straight CT scan but depends on what kind of doc and their specialty and knowledge as well as willingness to think outside the box. Often when they suspect TMJ, they do the CBCT to look closely at the jaw and TMJ joint. I had this done, followed my MRI of neck that showed little over a period of 5 years until my pain became extreme.
A neurologist is good for RX and injections if they do them to knock down the nerve pain. I happened to luck out and mine had enough knowledge to recognize my symptoms and do a trial and error nerve blocks to indicate a possible ES diagnosis. After I was pointed in the right direction, it all fell into place.
Ultimately if you need surgery, an ENT who has a background in cancer of the neck and does neck surgeries and has experience with ES surgeries is where you want to ultimately end up once ES diagnosis is confirmed. I was luckily able to talk my PCP into doing CT scan of neck and jumped right to the experienced ENT thanks to all I learned here.

2 Likes

Thank you @Isaiah_40_31.
I don’t have any ent or neurologist appointment for now to get the ct scan order. I have only tmj specialist appointment and I hope he will only do cbct and not CT scan. Whether tmj specialist will do ct scan order? I am not sure about this.

If I go to a neurologist before an ENT, I might get the order for mri. My PCP will not order anything for me now and he want me to go to a specialist(neurologist).

I am hoping that cbct will show something of eagles. Will cbct be a little helpful? In that case, I can rule out tmjd and move to other diagnosis eagles or neuralgia.

My dentist also thinks that I have a tooth fracture in lower first molar and that could be the culprit for this pain and symptoms. I went to 2 endodontist for this issue. They couldn’t see any fracture and pointed pulpits. One of the endodontist did a root canal on that tooth to see if any fracture present in the root down. He couldn’t see any fracture and it’s been 3 weeks and same symptoms. So my dentist still suspect that tooth could also be the problem.
He want me to try extracting it. I don’t want to extract it without proper diagnosis. So I have been holding on it.

Thank you so much @Jules.

I exactly have severe constant pain in the lower jaw, in front of ear and inside, down the lower jaw and side of the neck. It’s so tight and stiff in the throat and neck. Feels so tight in the neck and throat. Hurts continuously.
Only on the right side. Might be neuralgia as you mentioned. I never tried nerve medicines. My PCP didn’t prescribe me that. He told me to go see a neurologist. I am not sure if that particular neurologist will have a knowledge about eagles.

I am planning to get cbct from the tmj specialist office. I have to ask them to do it as they will not do it before we agree to the treatment plan which is around 4k or 5k. I have to ask them to do it before the treatment starts. I think I can request them to go below the jaw too if that’s possible in cbct. It’s standing machine right. I am not sure if it covers below the jaw.

Thank you @Snapple2020.

I am going to a tmj specialist dentist. He is not an oral surgeon.he is a tmj specialist who see TMJ and sleep apnea patients. So, he will not order ct scan I guess. Might take only cbct.

I have seen his website where it mentioned like he also see myofacial pain, neuropathic pain patients too. I don’t know if he actually diagnose or refer to other specialist. I am going to ask him that if my symptoms looks like neuralgia or not.

You are lucky to get correct providers. I am still struggling on that for last 5 months and not getting proper diagnosis. Pcp is of no help now. I asked him to order some imaging for further diagnosis. He ordered neck ultrasound and gave referral to neurologist.

Which part of US are you in? I am in Atlanta.
Did mri of the neck shows something in your case? Did you wait 5 years for the proper diagnosis? Have you down surgery now?

Forgot to add these. I have ringing in my ears. I have ringing in right ear sometimes. But I hear some soft music sound in that ear whenever I am lying down. That too when ac or fan is on. This is going on for 2 months now. And I have sore pain on the head on only one spot which is above the ear on top of the head. It hurts to touch. Sore pain.

Hi Newuserhere,

I sent you a link (above) to a paper where CBCT scans were used to evaluate the styloid lengths in a number of people so that type of scan can detect ES.

The ringing in your ears & pain on your head that hurts to the touch can be caused by the trigeminal nerve & other smaller nerves which branch off the trigeminal nerve. These are not uncommon w/ ES but can also be a part of trigeminal neuralgia. Again, the TMJ doctor could potentially diagnose ES if he’s familiar w/ it & sees it on your CBCT scan. You should mention to him that you have some symptoms that could point to you having ES but you need confirmation.

You have gotten good advice from both Jules & Snapple2020 as well.

1 Like

Hi @Newuserhere not sure what type of ultrasound your doctor offered but I had a vascular ultrasound of my neck and that did find my internal jugular vein was compressed, basically the blood was rushing through there way faster than normal. That combined with the ct scan without contrast he was able to theorize that my styloid and ligaments are potentially compressing the vein. I am having a cerebral angiogram to further test pressure of the veins and map them.

Vascular Eagles can cause pulsatile tinnitus (heart beating in your head) whooshing, dizziness, headaches and other issues. For me it also has caused neck and shoulder pain and tingling in my arm. All symptoms on my right side but the ultrasound showed compression on both sides of my neck. I don’t know anything about TMJ specialists but I hope this one is helpful to you! My doctor is an ENT/head and neck surgeon. There is a recommended list of eagle syndrome providers On this site and it might help you to see one of them if you can.

1 Like

Thank you @blossom. Appreciate it.
I had head and neck soft tissues ultrasound and no abnormalities found.

I don’t know if it covers the vascular thing. The radiologist told me that they will check soft tissues and lymph nodes. This ultra sound has been ordered to me since I have a small lump in that side of the neck.

Thanks for the link @Isaiah_40_31.
I will ask them to get a cbct during my visit. Hope that shows an idea for proper diagnosis.

1 Like

Hi all,
@Isaiah_40_31, @Snapple2020, @Jules, @blossom

My dentist told me that it could be either tmjd or eagles syndrome. My PCP told me to rule out trigeminal neuralgia as well. My dentist referred me to a specialist. He is a tmj specialist dentist. Not an oral surgeon though.

I have consulted tmj specialist today and he took an tomography and pan images. He told me that I don’t have eagles syndrome. He also said I don’t have neuralgia as my symptoms didn’t increase gradually. He said it will increase gradually in the case of neuralgia. Mine is all of a sudden pain one day and still the same since may.

He said it’s myofacial pain and issue in the jaw joint. The muscles are tightened up and pulling up the jaw joint and causing this burning pain. But he is not sure why I have pain in the side of the neck with small lump and mild swelling. He said to try his treatment for few months and if it doesn’t improve, he told me to see someone and get mri head and neck that time.

His treatment plan was day time for 4 months and night time appliance for years. It takes around 6 months to finish the treatment. Costs around 4.5k and not covered under insurance. None of the tmj specialist in my city is not covered under insurance.

He said it might help with the muscle tightness and jaw joint issue. He didn’t see any disc dislocation.

He also told me to do physical therapy along with this to improve the muscle stretching and tightening.

Do anyone see any styloids in these images? He said he couldn’t see any calcification.

Hi Newuserhere,

I don’t see styloids in your scan per se but the angle isn’t good for seeing them. The bottom pics all look like they’re focused on your jaw joint which makes sense if this was a TMJ evaluation.

I did annotate the top picture w/ arrows pointing to a shadowy image that could be your left styloid. If it is, it is longer than normal. I would still pursue getting a CT scan for Eagle Syndrome evaluation. Also, different doctors have different standards by which they diagnose ES so a second opinion is always worthwhile.

1 Like

The ultrasound you had likely would not cover it; you’d need to see a vascular doctor for them to look at the veins in your neck. But if you don’t have vascular symptoms (headaches, dizziness, pulsatile tinnitus) that probably isn’t the best way to go anyway. A CT scan without contrast shows the styloid best.

1 Like

I didnt think I could see any either but Isaiah is the expert reader of these and if she is correct that the vague line she indicates is the styloid, I would disagree with your TMJ specialist. You dont have any good views that show this area. I’m not so sure I agree with the assessment of gradual vs sudden pain for neuralgia either.
Well, I have been down this road of appliances and all and generally speaking most insurances wont cover a TMJ diagnosis. You need a doc that is creative with the diagnosis codes to get covered by insurance. I didn’t find the appliances to be helpful but I have heard with the right doctor/dentist at the helm, can be very helpful. I did oral PT and all kinds of modalities,. I also have osteoarthritis of the jaw. This same dentist had me spend another 4K on my daughter when she was young and we had to repeat the process again when she got into her teens for another 4K. I hate to be so suspicious but my experience was this doctor was just doing what he does best, making $$. I started this jaw thing many years ago and also went to Cedar Sinai Pain Center in Los Angeles and then also University of WA Oral Health Center. Another person on this blog described UW Center as a “traditional” approach and mostly done w appliances and kinda old school. She said it didnt help her much. She found another TMJ doctor who thought outside the box and even though he did do appliances that helped her, was more progressive. This guy sounds like traditional approach. I suggest a 2nd opinion with another TMJ person at a minimum before spending that $$. I would also want to know about the small lump and what is causing it.
I had a small lump below my ear that disappeared after ES surgery. Doc had no explanation for that. They also found a lymph node with considerable activity they took out and it was benign. One thing we know is the calcification process is a result of inflammation. With inflammation brings swelling.

I have been thru so much PT for my neck/shoulders and jaw. Massage, chiropractic, injections, you name it for probably 30 years. Although some has been partially helpfully, if it is ES, it wont help it. Only surgery will. When my pain started getting worse in 2015, I had MRI which didnt show anything.
Im going in next week to get botox in my masetter and the temples because my muscles are very tight. I also went to another pain specialist that agreed with this plan. Above all, these injections have helped me more than anything to reduce pain. Ive been struggling with this before and after surgery. I was told it might kick up after surgery. It did but it is much better.

Just my 2 cents, but (if you cant get a doc to write order for CT or who doesnt go thru process of pre-authorization), I would pay out of pocket for a CT Scan of neck before spending 4.5K on appliances. You can usually call in advance and negotiate a cash only price with radiology group. That way, you dont spend months or years chasing this down.

2 Likes

Thank you @Isaiah_40_31.

The specialist didn’t mention anything about the styloids in this image. If my left styloid is bigger, it should show some symptoms in the left side right? I don’t have any pain on the left. Everything on my right side.

He also said that there is no calcification. But he did say that my muscles are tightened and inflamed.
I think I have to go to an ENT. Tmj specialist said don’t hop around doctors as you did already for last 5 months. Try this treatment for few months and go for further diagnosis later. I was so confused.

Thank you so very much for all these information @Snapple2020. Appreciate it a lot.

So, how are you treating your tmjd along with eagles? I can understand that is the worst pain ever. How did you relieve your tmj pain?

There is a few of us discussing facial and tooth pain and the origins of it. I personally have had about 8 root canals and have had hyper-sensitive teeth. TMJ guy of course wants you 4.5 K. Sorry Im suspicious given my history.
As to styloid process and the ligaments. I dont think these films display them to make the determination of no calcifications. My pain started on my right, then shifted to left. I went thru this back and forth for 5 years, Doc wanted to do right first because it was longer. My pain was worse on left and I talked him into doing the left first. Now that I have taken care of the left, the right is starting to rear its ugly head. Our bodies compensate and hold according to pain. You are getting alot of information at once so slow down and digest information and see what fits for you. My experience may not be yours. These films don’t show accurately the info you need to rule out Eagles. Start from there. Hope that helps

2 Likes

I have been and am still treating the TMJD with a combination of nerve blocks, botox and steroids after trying other things. I also have done some acupuncture in jaw with TENS unit with some success more recently. I am going to start getting low level laser light therapy soon to see if that cuts down the inflammation because I cannot take NSAIDS or any type of anti-inflammatory. I have been getting almost weekly massage therapy…only because I have good PT benefits and that helps keep me stabilized.

1 Like

When I am in an extreme pain flair, I take oxycotin, lay in bed and put ice on the side of head and neck. It can take days to come out of this.

1 Like

Thank you so much @Snapple2020. I appreciate it.

Yeah, I am taking a pause and trying to understand what’s going on. This all started after a day where I was chewing my food more than usual. It was meat without bone and I was chewing it harder on the right side.
I felt soreness in the molars immediately after the meal.

Next day I heard a pop in the jaw and this pain started. I was digging to past to know what happened before the pain started and what could be the root cause.

I am also doing PT. Did for 3 weeks so far. Tried dry needling. PT doesn’t help me much. Not even a temporary relief. PT takes time. So, planning to continue for few more weeks and see how it goes.

I am not immediately accepting to the tmj specialist treatment plan. It’s very expensive and not under insurance. If the pain is still the same, I will go ahead with that.

1 Like

I got the cbct scan from the tmj specialist office in a disc. I am trying to open it with some software. Couldn’t open it in 3d yet. I sent this scan to a radiologist and got the report. The styloids are of length 26.51,27.06 mm. The report says within normal.

What is the normal length for styloids? I try to attach those images here. What else do we need to check for eagles apart from styloids length?

styloid processes.pdf (838.3 KB)
3d images.pdf (1.8 MB)
3d images TMJ.pdf (2.2 MB)
Lab Report 1-10-2020.pdf (226.6 KB)