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

[Newuserhere]

I am just back from physical check.
I asked my PCP the first question is about the eagles syndrome. She honestly replied that she don’t know about it. She genuinely asked me what it is and how it is treated and said she don’t know anything about it.

I forgot to take the document with me about eagles. I missed it. Can you please share a document or article to be shared with my PCP to make her understand about it or know about it.
@Isaiah_40_31, @Snapple2020. What documents should I send her to read about it? Please help.

She asked me did I ask about eagles to an ENT or oral surgeon. I said I did ask them. But they said it looks normal. Then she said we can leave that then. I insist her and kept on talking about it and told her I want to rule this out . I want to rule out to make it to dental issue before doing any dental procedure.

She didn’t agree for CT with my words. She want me to ask the neurologist to do mri for neck as well. But the neuro didn’t order mri neck. Only the mri brain. She said mri Brain won’t cover anything in the neck area. Request them again for mri neck.

Then she examined me and neck and lower jaw was so tender. So she said she will do ct neck scan. She want me to try a new medication called Duloxetine DR 30mg. She said try this. If it doesn’t helps, we will do imaging.

She said she can’t order mri. It has to come from neurologist for insurance coverage. She said she can order ct scan. But didn’t give the order in hand. I asked them and they said they will do it online. I am yet to see that in my chart online. Will wait for a day and ask her back. It has to be with or without contrast. I remember her saying with contrast. Should I ask for without contrast. I had taken so many papers with me today about all doctor visits and was showing her that and missed to give the eagles documents. She didn’t know about it and not concerned much though.

She asked if I have taken any ct scan till now. I told I have taken cbct scan at tmj specialist office. She wanted that report. But they didn’t give me any report. I got a report by myself with a radiologist from another country. She saw that and said its mentioned like your styloids are normal. So, I think we don’t need to worry about it.
But still I would order ct scan to check. She also said if I take ct scan, I don’t need mri for neck. Is that true? Both show same things?

I have to get the report from tmj specialist office and I am not sure if he will do a report for that scan. Whether tmj specialist will do reports? Any idea?

I am also planning to send her some articles about eagles for her to study about.
How to get report for my cbct scan in the USA? Any idea?

I didn’t understand anything from the report which I got personally from another radiologist. She go through that and said it’s mentioned like periapical abscess in that tooth. But none of the dentist or Endodontist told me about this. It’s mentioned in that tmj cbct scan report. I don’t know if that’s the reason for my pain in jaw and neck. I should send this report to Endo and dentist to check that out. But if any abscess present , they would have told me about it I believe. So it’s confusing.

[Newuserhere]

I just sent this link to my PCP in email.

Eagle's syndrome: a case report and CT pictorial review

Hope this will give her some information about eagles. She said amshe haven’t heard of it before and who will check and tmwhat is treatment for that. She asked me all these questions.

[Jules]

This article explains it fine for her, & states that a CT will show the styloid processes. I disagree with her saying that if you have the CT of the neck you don’t need the MRI- MRIs are useful for seeing if there are any other neck problems which is helpful to rule out, but if you can only get one, then the CT is the most helpful for you to rule out ES. MRIs show soft tissues, whereas the CT will show bone & calcification ie the styloids & any calcified stylo-hyoid ligaments. A CT with contrast is useful if you have vascular symptoms, like dizziness, fainting, especially with the head in certain positions. (There’s more info in the Newbies Guide Section about the symptoms) If you don’t have those symptoms, then I wouldn’t worry about the contrast- there can very occasionally be side effects from it so probably not worth it unless there’s a need, but if that’s what she’s ordered then given how much of a hassle you’ve had to get one then maybe don’t argue! MRIs don’t use radiation so there’s no risk in having that as well as a CT, but would be best to have it done on neck as well as the brain, I agree with her on that.
The Duloxetine is worth trying as it can be for nerve pain so might help.
It’s strange that the report you’ve put on mentions an abscess, but your endo & dentist haven’t said anything about that- it’s a good idea to ask them about this too.
Let us know how you get on!

[Newuserhere]

Thanks @Jules. Appreciate it.

I did send my PCP the cbct scan which I have taken at tmj specialist office. She did tell me that she don’t know how to read those images. She want a report to read about. I didn’t get any report from tmj office and I asked her to talk to the tmj specialist.
I got the report by myself from a radiologist from another country. So not sure if this is correct or not.

She has ordered me CT for soft tissue neck with contrast. I didn’t email her back to ask about without contrast. I don’t want to argue with her about this.
I hope the order which she mentioned should cover the area in tht lower jaw under ear as well. My pain is in lower jaw under ear and side of the neck and over the lower jaw line. She mentioned with contrast.
I am just little concerned about the contrast though. I don’t have any symptoms as you mentioned like dizzing etc. So, I don’t know if I am doing the right one. I don’t have mri order for neck. I have it only for brain. So she felt no point in doing that alone to find the cause as my pain is in the lower area.

I am waiting to hear from her. She said she will look into my tmj clinical notes and cbct scan and let me know her inputs. Planning to proceed with ct scan after her response.

Should I ask for CT with head too? Or neck soft tissue with contrast will cover needed infor for eagles diagnosis?

[Snapple2020]

Since you had a CBCT and getting a CT of neck, I doubt imaging of the head would be of value and would be overkill on imaging. I agree with Jules, contrast is not worth worrying about. Most people have no reaction beyond felling warm all over. The are on top of potential side effects at the radiology center and watch closely for any potential side effects.
Although CT without contrast is ideal for ES diagnosis, if you dont want to argue the point, I suggest just going with it. If she only wants to see the report and not the scan, she doesnt have the full skills necessary to evaluate for Eagles however with scan in hand on disk, you can get proper eagles evaluation. All ES surgeons want to read their own scans and do not rely on a radiologists report.

[Jules]

I would think a CT of the neck would cover from above the jaw line down, so it should show the styloid processes if they’re elongated. I don’t know the US system, but you might get the chance to clarify where they’re doing the CT & check that it’s being evaluated for ES. Hope you can get it done soon!

[Newuserhere]

Thank you @Snapple2020.

I got the order from my PCP. It’s CT neck soft tissue with contrast.
I didn’t ask her about contrast yet. I hope eagles can be diagnosed with contrast too?

She told me that, I needed mri imaging for neck. Neuro ordered me only mri brain with contrast to check TN. She was not convinced for not ordering the MRI neck.

GP told me that, if I do CT scan with contrast, no need of MRI scan. It will show the required findings. So I am confused if I need to do MRI imaging after this CT. Or this will show nerves too?

Whether ct neck soft tissue with contrast scan shows nerves/ other findings which mri will show? I don’t want to do over imaging as well as you said. So I didn’t ask for CT head.
Whether I need to do MRI and CT or CT will cover everything? Any thoughts @Snapple2020, @Isaiah_40_31, @Jules.

[Newuserhere]

@Jules, I don’t think here we can get a chance to clarify about evaluation in the imaging center. It has to come from doctors and it has to be mentioned in the order. So,a patient cannot say the additional evaluation information there.

Now, I am thinking if I should do both MRI and CT. Or CT will cover everything?

Another question here to all.
I have taken multiple dental x-rays and 3 dental CBCT scan so far since June. Multiple xrays. Taken around 12 times in different dentist office. pan xray and digital x-rays, 3 cbct scan.

Is it ok to have CT scan with contrast now? Or is it harmful to have so many CT in a short period of time? I understand MRI doesn’t have any radiation. Whether having too many CT ok?

[Jules]

It’s not ideal to have so much radiation, (I didn’t realise you’d had that many scans & Xrays) so that’s up to you- it’s the only way you’ll be able to rule ES in or out though! An MRI doesn’t use radiation, but this won’t show the styloids properly as it’s only for soft tissues & doesn’t show calcified tissues/ bone.
You asked Snapple if ES can be diagnosed by CT with contrast & the answer’s yes- it will show the styloid processes & also if they compress blood vessels.
CTs don’t show nerves, but an MRI can, although not in minute detail. So to have both would be helpful to rule ES in or out & to look for any other conditions.

[Snapple2020]

wow that is alot of CBCT’s in a short period of time (I think you have seen several providers) and Im not sure why so many done as it is not necessary unless there is some flaw but nevertheless, as Jules said there is always a risk of too much radiation but it certainly isn’t the same levels as in the past.
I encourage you to have all this radiology on disk in your possession. If the docs you see cant read them, I suggest getting screen shots of key areas. I plan to do this with the recent CBCT I got for my other docs and dentist so we can all be on the same page.
In order to rule in or out Eagles, you need a CT of neck. Even if this is with contrast, I would go with it and get it done. The risk of over-radiation is less than the harm of going for months without a proper diagnosis which you have been working hard to get. One step at a time. Wait on the MRI and see what this produces.

[TheDude]

Hi newuserhere,

a dvt would still be a possibility with lower radiation exposure and good representation of the bones. I’ve had one in between, as I’ve had also many x-rays and the radiation exposure should be kept low. I have also had an MRI but there you can’t see the styloids etc.

Digital volume tomography in the diagnosis of nasal bone fractures - PubMed

[Isaiah_40_31]

You’ve gotten thorough advice from Snapple2020, Jules & The Dude. I can’t really add anything.

[Newuserhere]

Thank you @TheDude, @Isaiah_40_31, @Snapple2020, @Jules.

@Jules and @Snapple2020,
Yeah. I had 3 dental cbct since June. One cbct in june for the tooth when I first went in to my dentist for jaw pain.
Second cbct is at tmj specialist office for tmj cbct. He said my first cbct of the tooth doesn’t show the tmj at all.
Third cbct is the extra one which I would have avoided. I asked by myself and forced the Endo to take one. I taken my first cbct tooth disc to my Endo office. He couldn’t open. I asked my dentist to send them digitally. He couldn’t open it either. I took my personal laptop with the disc and gave it to him. He saw that, but he said he is not familiar in this software and don’t know how to view. He was literally moving the mouse here and there, and told me he don’t know how this software works.
Then he told me to go for extraction of that tooth since it was troubling me after root canal too. Then, I requested him to take one at his office to get the definite diagnosis for tooth fracture before I go for extraction. He refused it and told me waste of money.
I do understand that and I was in a situation where going round in circles without an answer. Endo never took a CBCT at his office since june or saw my first cbct too. So, I got the third cbct scan for that tooth at his office 2 weeks back. He saw the cbct and said no signs of bone loss, no fracture. After the cbct, he told me that he will redo the root canal and if that doesn’t help, go for extraction.

I feel it’s too much to have ct scans within a short time. I hate to get it done.
I had taken dental digital x-rays at different dentist office as they want their own x-rays to be seen even though I shared them my previous xray copies.
I had taken around 6 pan xrays. 3 pan xray taken during my upper wisdom tooth extraction in July. Before and after extraction.

Is it ok if I go ahead with this ct scan now? Or should I give some time?
Got a question about contrast. I have an mri order for MRI brain with contrast. If I have this ct with contrast, how long should I give before taking another contrast?

What would you do? Will you go ahead with CT now considering radiation and contrast, or wait and do later?

I am also struggling to find some ways to see if something seen on my dental tmj cbct scan for eagles. I am trying to convert it to 3D.
My PCP is asking me a report for that cbct. She said she don’t know how to read those images and she want only the written report for my cbct. I didn’t get any cbct written report from tmj office. So, she said she will order one CT for neck.
I don’t know if this is ok. Any inputs please
@Isaiah_40_31, @Snapple2020, @Jules.

@TheDude I don’t know what is DVT mean? Haven’t heard of it before. What does it show? Same as CT scan?

[TheDude]

Temporal bone imaging using digital volume tomography and computed tomography:...

Digital volume tomography of the facial skeleton

[Snapple2020]

It is not uncommon for doctors/dentists not to be able to view CBCT scans on their systems and software varies. This is also the case for any kind of radiology. Many doctors rely on the reports and honestly don’t know how to read the scans. Surgeons however like to see the scan for themselves because radiologists miss fine detail the surgeons are looking for. Keep in mind generally most docs do not know how to read radiology scans or are limited based on their experience.

If you want reports, you need to fill out a “Request for Medical Records” from the place you had the CBCT performed. You can specify what doctors (even yourself as the patient) to receive copies. You can usually find those on their websites and do it all remotely. I usually have ALL records sent to me so I can read them all and have them to make copies and provide to other doctors.

It is doubtful a TMJ CBCT will show eagles but may provide some hints, that is why a CT scan of neck is the gold standard for ES diagnosis. If you want confirmation of ES, you need a CT scan of neck. A brain MRI will not diagnosis ES.

We are not doctors here and cannot answer questions about contrast and radiation because none of us really know those answers.

[Newuserhere]

Thank you @Snapple2020. I did check about medical records release.
Looks like my tmj specialist doesn’t do detailed reports for cbct. He said he have his clinical notes with one statement which says imaging is normal. He said he won’t do more reporting in his practice. So I couldn’t get any report from that cbct for my primary doctor.

Thanks for your inputs. Appreciate it.

[Jules]

Yes, as Snapple says, we can’t give you advice about the contrast used & timings for an MRI & CT with contrast, you would have to speak to your doctor about that one…I’m sorry if you’ve already said this, but do you have any copies, or could you get hold of copies of your panoramic xrays? Occasionally the styloids do show on those- sorry if you’ve already posted this, hectic time of year & brain’s a bit fried!

[Snapple2020]

Well at the the time you write this I was making inquiries to my TMJ specialist about reports. I asked for a consultation report and a plan of care which I expect I should get at a minimum for the $350 fee I paid out of pocket. Ill let you know what I am able to acquire.
I did get a CBCT report 5 years ago but it was done at an Oral Health Center at a major university setting so it was read by a dental radiologist. Given my recent one done in TMJ specialist office, an official radiology report might not be generated. I hope I can acquire more than just chart notes.

[Newuserhere]

Thank you @Snapple2020. Please do let me know what you get.
I paid $370 out of pocket for this consultation.
He did burn a disc of images for me. Also when I told him that other doctors couldn’t open the disc images, he said he will place the images in the cloud and placed the cbct images in the cloud for me. Those were very helpful but he didn’t give any written report for cbct of tmj. He just gave the clinical notes for me . In that, there is a statement which says, radiology imaging done…this is the statement.

Imaging Performed today
Condylar normal morphology (bilateral)

No more information about it. I asked them again this week since my PCP is asking the report. They said their office doesn’t give detailed report.

[Newuserhere]

I have copies of my pan xray and cbct scan images.
I have posted earlier. I am posting it again here for you.

These are copies of pan xrays taken at different office. As I mentioned , I have taken around 6 pan xrays since June. Every dentist and oral surgeon office asked for new pan when I visited. I went for second opinion and had to take new pan. Ended up with more radiation…