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

General
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I had both. The last one was with contrast showing there is still IJVS and 2 years earlier I had one w/out contrast before my surgeries. I sent both to them.

They told me to drink before and after the scan too. Water or anything else, even beer would had been ok. I had chosen icetea and water.

I don’t know if they told you yet, but you might feel a warm flush in your whole body when the contrast is injected. Feels a little bit strange but nothing to worry about. It is usual and lasts only a few minutes.

So good luck for your scan and cheers!

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Hope that you were able to have the scan- great that you got a cancellation!

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Thanks @TheDude.
Did you send the CD hard copy through mail? Do they send us back those CD after the consult? I have only one cd copy and I don’t know how to take another copy from it.

Yeah. The contrast was giving warm flush and some taste in the mouth. Also I felt like urinating on my own and the technician told me that I will get that feeling of passing urine.

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@TheDude, @Jules, @Snapple2020, @Isaiah_40_31,
I had my scan today. It’s with contrast. Technician asked me why I am here today. I did say the symptoms and told that my doctor want to check for few things. Lymph nodes, swelling and eagles Syndrome.

Technician thought I don’t know English and asked what I am talking about. I am not from the US,I am from a different country.
I said it’s a rare condition and my symptoms matches with it and doctor wants to evaluate it. She asked are you talking about the bird eagle and shown her arms like wings. I said yes. She said, she is hearing it for the first time. I asked if I can see the radiologist and they said I can’t see them.

Even after the scan, I told her that measurements value of styloid process should be in my report. That room was so noisy too. She literally didn’t understand anything. Those words are new to her.
To be honest, she didn’t know what the styloids process was.
I understand we can’t expect much from the technician.

During the scan, she put some marker stickers on the spots where I have lump. She put me in to the scanner before the contrast. And put me in again after the contrast injection.
I thought they captured both the times. I asked her and she said, the first time is to just set up the machine to focus on the neck area. I told, if you have captured any image in the first round, it will be helpful for the measurements. She literally didn’t understand it and said I don’t understand anything. The radiologist will report if he see anything and sent me out.
I choose a different centre this time as this is affiliated to a hospital and a bigger facility. I used to do to a different center. This center has his reviews and we’ll equipped machines. So I chose this facility expecting that they would be aware if eagles syndrome.

I am hoping the radiologist will see the doctor notes and assess that. I got the images burnt in a disc. I didn’t open it yet. I don’t know how to read those images. Can we convert to 3d on our own?

Got another general question. I was leaving my eyes open when I get into the scanner machine. Eyes open on and off when I am in the tunnel. Will that harm eyes?

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@TheDude, @Snapple2020, @Isaiah_40_31, @Jules.

By the time I posted the previous message, I got the mail from the mychart system for lab results. Doctor didn’t review it yet. It has been uploaded from the radiologist office.

My bad: (((( I want to cry now. The report didn’t say anything about the eagles Syndrome. I think the radiologist reported it so fast. I had my scan at 3.00pm and the report was uploaded at 3.40pm.

The radiologist missed to see doctor notes I believe. Or he might not be aware of eagles Syndrome evaluation. What should I do now?

I am planning to call the radiologist center and ask them to connect me to radiologist if possible. Or tell the staff that doctor notes is not being evaluated. I don’t know what to do if they say, he is not sure how to evaluate. What to do. I don’t know why he missed it. I am attaching the report I got. Is this how the ct report looks like??? Or any details missing???

Study Result

Impression

No acute CT abnormality in the neck. No pathologically enlarged,
necrotic, or otherwise abnormal lymph nodes.

Narrative

CT SOFT TISSUE NECK W CONTRAST

TECHNIQUE: CT images of the neck were obtained with intravenous
contrast. Isovue-370 was injected without complications. Dose reduction
techniques were utilized for this examination. DICOM format image data
is available to non-affiliated external healthcare facilities or
entities on a secure, media-free, reciprocally searchable basis with
patient authorization for at least a 12-month period after the study.

CLINICAL INDICATION: Lymphadenopathy, neck;Localized enlarged lymph
nodes;Cervicalgia.

COMPARISON: Neck ultrasound August 28, 2020.

FINDINGS:
Aerodigestive Structures: The nasal cavity, nasopharynx, oral cavity,
oropharynx, hypopharynx, larynx, and included trachea and esophagus
demonstrate no masses or abnormal enhancement.

Lymph Nodes: No pathologically enlarged, necrotic, or otherwise abnormal
lymph nodes.

Vasculature: Normal.

Salivary Glands: Normal parotid and submandibular glands.

Thyroid: Normal.

Visualized Intracranial Structures: Normal.

Included Orbits: Normal.

Paranasal Sinuses/Mastoids: Predominantly clear.

Included Lung Apices: Normal.

Bones/Soft Tissues: No aggressive osseous lesion. No acute soft tissue
abnormality.
– report ends

What should I do: ((( I feel like crying loud. I am so tired and frustrated being going in rounds and thought this will give me a hope to see the light at the end of the tunnel:( my bad luck. Should I fight for the proper report? Please help how to proceed with this. What should I ask for?

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You can request that the radiologist re-read your CT scan to evaluate your styloid processes for elongation & stylohyoid ligaments for calcification. Since your doctor requested an evaluation for ES, it’s his mistake for not checking for that. It is possible he’s not familiar with it either so didn’t know what to do, but you’d think he’d look it up if he doesn’t know what it is. The lab tech who did my CT was familiar w/ ES, & when I mentioned why I was in there, he said he did ES evaluation scans all the time. That made me think he didn’t really know what it is since it’s pretty rare.

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Ditto on Isaiah suggestions.

Do you have proof PCP added the language for the ES evaluation? I would verify that before requesting further evaluation. Get a copy of it (if needed) and demand he re-read the scan per doctors orders.

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Hey,
good that you did your CT. To have the recordings yourself on CD is a milestone. With the software from 3D Slicer you can also create a 3D view. The instructions can also be found here in the forum.

Yes, Dr Samji needs copies of the CDs. I tried it with iso files that I sent there, but he wanted official data from the radiologist. So I had the radiologist burn CDs for Samji again and sent them there. Fortunately, the radiologists did that immediately for free. I don’t know if I’ll get them back, but that’s not so important either, because they are copies.

The fact that the radiologist did not look for ES is really frustrating. Don’t they treat people in the US, just pictures ?! For me that’s absurd, especially when you have to pay for it yourself.

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That is so frustrating, & like you say done so quickly, sounds like the radiologist rushed the report…I agree with the others’ suggestions.

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Yes. I know she added that in my order. I can’t see it though in mychart. Only the radiologist and others can see. Because, I asked the scheduling department what’s mentioned in my doctor notes and they said evaluation of eagles syndrome. After confirming that, I did schedule that appointment.

Is there a chance that radiologist will say that he don’t know how to assess this? What to do in that case? I was hoping any radiologist will know about it.

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Yeah. He rushed it. It was my mistake. I went in before the closing time. My appointment was at 3pm and they close at 4. But the technician said reports will be ready only the next day. But he rushed it.

My PCP created 2 tickets for this scan. In the first ticket, she didn’t add eagles syndrome. After my request, she created another ticket and added eagles evaluation in that. But when I asked the scheduling department, they could see only the latest ticket with eagles assessment on it.

I don’t know why he missed it. Will they reevaluate if I ask???

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@Isaiah_40_31. Lucky you.
My lab tech didn’t know that word at all. When I was saying, she acted like I am blabbering something and I tried so much to explain her and she didn’t get it at all.

I assumed radiologist will know it. Its so frustrating that not even one good hope it’s not happening. Don’t know why. Just venting. Sorry.

If the radiologist say he doesn’t know, should I request him to send to other Radiologist who know about it???

I didn’t get any doctor comments for this scan. My PCP would have received this scan report too. I am going to ask her too. May be she can send back to the radiologist for reevaluate. Or my PCP will assume no eagles results in my report. Pcp doesn’t know what should be the findings for eagles. She really don’t know about it. I just made her to add it to my scan order.

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New,

I woke up thinking of you this am and I know you must be so frustrated. I am sorry you were not treated more respectfully by the technician as well.

This is not an issue of the radiologist not familiar with how to evaluate for Eagles syndrome. This is their job to follow doctors orders and there are protocols in place to follow to evaluate.

This should be a simple fix. Call the radiology place and tell them they did not evaluate all of doctors orders and that they need to look at scans again and re-issue a new report that includes eagle syndrome. I would point out that you need measurements of the styloid process as part of that evaluation although they should know that as it should be part of that evaluation protocol.

Hang in there New, keep pushing. The medical system has a lot of flaws in it and there is alot of things that fall thru the cracks I think in part due to be overwhelmed and part incompetence. I spent 2 hours on the phone yesterday with my son health insurance company battling to get him MRI that was denied. He has been dealing with this since early Nov and I’m now taking on the battle for him. Its a process and a very frustrating one.

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@Snapple2020, @Jules, @Isaiah_40_31

I just called the radiologist center and ask them about the radiologist. It looks like, the radiologist is from another office and they said they don’t know who reported it.
I asked the front staff to connect to the CT department. A woman picked up the call and she said she is very busy right now with a patient and she said she don’t have access to the computer and don’t know what report I am talking about. She asked me to call back in the late afternoon. She was so rude!!! I feel so bad.

I tried to contact the general scheduling line where I contacted them for schedule. They said , a patient cannot talk to a Radiologist. It’s not possible and asked me to contact the doctor who ordered it. The doctor might know if those information is included in the report or not. You are not a medical person. So you don’t know if it’s there or not. The report has sent to you only after thr doctor relases it. So you don’t know if you have those information or not.
They said to contact the doctor. And think that I am behaving like a medical person. I am not!!! I know that my doctor doesn’t know anything about eagles and she dont know what should be there for eagles evaluation. I am 100% sure about it.
I told them and they said , the request has to go to the radiologist through the doctor and not through patient.

I emailed my doctor and asked her to call the radiologist to reevaluate it. I also called her office and she is on leave till Jan 4th:(
I sent her a message in the MyChart. Hope she see it if she get sometime. Can’t expect to respond when she is in vacation.

I tried to google the radiologist name which I have it in the report. And he belongs to the radiologist office. I think the imaging center is sending the images to this radiologist office and any radiologist is reporting it from there.

I called their office and option 1 to connect is, if you are physician and want to talk to the radiologist. I didn’t choose that. All other options is going to the mailbox only. I left so many messages and none of the option is going to a real person talking to me.
I don’t know if I can choose the first option. I leave so many messages to them and no calls from them yet. Don’t know how to connect to someone there.

Or should I wait till my PCP is back and she can call the radiologist and do reevaluate. I don’t know if they have the images for so long in their system.

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Snapple’s said it very well; unfortunately it seems as if every step’s going to be a battle for you, so keep pushing & don’t give up. You don’t want to have to keep going round in circles so get back on to the radiologists & ask for it to be evaluated properly. It’s frustrating but unfortunately we have to advocate for ourselves…

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Yeah. I understand. But I couldn’t reach them at all. Don’t know how to connect to the radiologist…I thought the radiologist will be in the same office as imaging center. The imaging center was not so helpful and the radiologist is in another office. I don’t know how to proceed here. Doctor is on vacation too.

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New,
Hang in there and don’t let rude people deter you. Call back as you were directed later and ask for CT department. Explain that the radiologist did not follow ALL your doctors instruction. That the doctor amended the order to include Eagles Syndrome which you confirmed in advance. Ask them to review the order and re-read the scan to include doctors order and amend the CT report by the radiologist.

Keep it simple and don’t explain anymore beyond that. Stick to “they didn’t follow the doctors order” If they try the “you are not a doctor BS” clearly state to pull up the order and see the amended order. If you have a date it was added, it would be helpful. Don’t let them push you around and stick to your guns. If they give you more BS, ask to talk to the office manager. Give up on talking to radiologist. Go for the office manager.

If you really want to have an impact, get their fax number and the office managers name. Type up your request and tell him/her how you are very upset with how you have been treated and say how you felt dismissed and treated unfairly because you are foreign. LOL. That will certainly get their attention.

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I’m sorry for the runaround you’re getting. The advice I can offer is that waiting until your PCP is back on Jan. 4 th isn’t so very long. Many doctors’ offices are closing for the Christmas & New Year holidays so perhaps even the radiology office has less radiologists working until the new year. If you left messages, they will be received by someone but it may take time (i.e. days to weeks) before you get a reply.

The advice Snapple gave you in the post above mine is good. Keep your request simple. Another thing you can do is copy links to some of the research papers on our forum & email them to the tech who did your CT so she can learn something. Also emailing links to your PCP to help educate her would be a good idea. There is a tab under “General” on the home page that says Research Papers. It contains some of the link for articles that have been posted on this forum.

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@Snapple2020, @Isaiah_40_31,

Thank you so much for the inputs.
I got a call back from the imaging center. I was waiting to call them back. Technician told me that she talk to her manager and got a phone number for the manager of the radiologist office and gave me the extension for the radiologist office manager.
She said they don’t know anything about reports. I have to contact the radiologist office.

The number which the teaching shared is the one I keep trying to reach since morning. No one picked up. I leave a message. I couldn’t reach out to the manager extension too.

I think I have to wait till Monday to get back from them. My PCP is not back until next Monday the 4th. I can wait till that. But my concern is, will they do re- reporting after so many days of scan? Is that possible?

I don’t have the email address of the technician. It’s not useful if I send her any links about eagles syndrome. Because she won’t be talking to radiologist and she don’t have any idea who the radiologist is. It’s 2 different office operating separately. I don’t think it will be helpful for her if I send her something. I have to find a way to contact the radiologist or the radiologist office.

Will they reread the scan even after a week or two? Will the radiologist accept to do that?
I got an email address for the radiologist office and I sent an email. Hope someone will reply to it on Monday.

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Per my other answer, Radiology Center has confirmed the order has Eagles evaluation so that order should be able to be accessed by radiologist. It is up to them to contact radiologist to have the scan re-read. Obviously the error is on their part or someone didn’t see the amended order and wasn’t paying attention. I suspect this was the radiologist whom wasn’t paying attention to the order. No problem with a few days passing to get re-read. There should be no reason this cannot be accomplished. You didn’t make the error, they did.

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