No Diagnosis/ Frustrating

Just got a call about my 3D CT. They said that there is “some” calcification of my styeloid ligament but “not enough to cause my symptoms”. Makes me angry and frustrated. They could not give me a length of the styeloid process.

That is frustrating! I would say that any calcification on the ligament could potentially cause symptoms; are you able to get a copy of the images & the report? There’s no reason why they shouldn’t be able to give you the length of the styloid process if the CT was clear enough. Do you know who looked at the CT images; was it a radiologist, or a doctor? If you can get a copy of the images, you could have a look at them yourself & compare them to images of people with an ES diagnosis, or you could post them on here, & also you could potentially send them to a more experienced doctor like Dr Samji or Dr Cognetti, who do telephone consults?
I hope this helps…

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lcconley24 ~

I totally agree w/ Jules!! Any calcification on the stylohyoid ligaments is too much. Calcification, even a little, tethers the s-h ligament which ties down the hyoid bone keeping both from being able to move normally when you swallow, breathe, sing, cough, laugh, etc. This lack of movement causes compromise in other soft tissues in that area of the neck which reflects in nerve irritation & thus ES symptoms.

I wish we had enough of a voice as “non-doctors” to educate the doctors who are NOT diagnosing people w/ ES because they don’t have the “right symptoms” or the “styloids aren’t long enough/ligaments aren’t calcified enough”…SO FRUSTRATING!!!

Do try to get a second opinion from Dr. Cognetti or Samji. There is a charge for this but usually insurance will pay at least a portion of it because it’s a second opinion.

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I’m not sure if both the radiologist and ENT looked at them or not. I am definitely getting a copy and pushing for some help. After I talked to them again today and told them that although they may think it’s not enough calcification to cause symptoms, I AM havimg symptoms and need answers, they set me up with another physician who they said had more experience with this. I’ll see what he has to say. Can’t get in until mid September. If I don’t get anywhere, I’ll send scans on to one of the recommended docs. Thank you for sharing in my frustration.


I hope the new doctor works out for you, & well done for pushing the point on the calcification for them!

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I just got an email from the office of the original doctor that I saw. This is what it says:

Per Dr. Kaiser The styloids don’t appear long but appear to be starting to calcify. At this point I think it (my symptoms) must be something else.

When I asked for the measurements of the styloids:

Styloid measurement not included on the report. You can contact Parkview Noble where imaging done and speak with radiology to determine if Radiologist can give you the measurement as this is not something that is typically included in the reports sent to providers.

First, the reason for doing the CT was to check the styloids and ligaments. Second, how can he say "they don’t “appear” lomg??? Third, if they are “starting to calcify”. how can he say that it can’t be the cause of my symtoms? Really frustrated…but I will keep digging for answers.

Hi lcconley24 -

Your doctor clearly doesn’t understand that elongated styloids interfere w/ cranial nerves which get irritated & cause the symptoms of ES. You need to print some published research papers to inform your doctor about this. Several links to helpful papers & more detailed ES info were recently posted on this thread:

I hope this helps.

It does sound as if they don’t know what they’re talking about! Very frustrating for you again…as you say, if they’re ‘starting to calcify’ then technically that’s ES given that it fits your symptoms. Sending you a hug & encouragement to keep pushing. Is sending the images to Dr Samji or Dr Cognetti for a phone consult an option?

Thank you. It helps to know there are people out there who can relate. Since I pushed the issue with my Dr. they set me up with another Dr. in their group who they said “has more experience with this”. We shall see. I couldn’t get in for another month. Meanwhile, I’m going to get copies of my scans and report. If I don’t get anywhere with him I will send them to one of the docs on the list. Thanks again!


Thank you.

I can relate so much to your story as I am still in the process of being diagnosed.
The doctors I have seen thus far are in denial or completely ignorant or too proud to admit that a average joe soap without medical qualifications is right and they are wrong.
So I hope you aren’t a quitter because I reckon like myself you have a few miles to go yet before you get sorted.
I changed the direction of my right ‘extension’ as it was pushing through the throat causing bleeding, at first I thought and announced that I had snapped it off.
But I only diverted its sharp tip into the hyoid muscle.
Thinking it was cancer for a while now with a possible diagnosis of MS or fibro myalgia or ‘we don’t know, let it develop, go home and suck it up’ has made it easier to accept, knowing it could be worse.
I have print offs of recommended articles (thanks to Isaiah and Jules, Jules and Isaiah no preferences :kissing_heart:) to give to the Gp(professor) that I wait to see in September and I can hopefully and respectfully convince this man I have ES and move onto the next stage.
If I fail then I will send an email to the chap in Cambridge and ask him for advise.
Fatigue is no. 1 issue followed by pain and insomnia, so much effort is required to keep going on some days I don’t know how I keep going, and so much concentration is needed on the technical work I do is a wonder I don’t break more than i repair, and my voice is gone and I’m sick of people telling me the line is bad, I can’t here what you saying, are you standing in a bucket, asking what did you say?
A quote from my understanding boss
“What choice do you have buy to keep going?”
And he is right.
Thank goodness for text and emails


Is the 3D CT a Cone Beam Tomography? If it is, a regular CT scan would be preferable. I will tell you I had a the 1st and the radiologist overlooked it in 2015. 5 years later and much pain after a doc suggested Eagles, i asked for a review of that scan. I was sent screen shots showing calcifications of the ligaments with a note it should cause any problems!!! WRONG! I pressed on (I was in extreme pain) and demanded a CT scan of neck without contrast because all peer reviewed papers consider it the gold standard for diagnosis of ES. I took a peer reviewed paper and the screen shots to my PCP to request he order the scan. He begrudingly did it and said it was TMJ. Well it came back showing I did have signs of ES on one side based on 2.5cm length on one side. The rest is history. Dont give up.
Well even the radiologist who did 2nd scan didnt measure right, said it was segmented (It was not) and I indeed have it on both sides. Ive had surgery on one side and it was longer that expected or show in the scans. Even the CT scan which is normally done in slices, doesnt show everything. It is more of an interpolation between the slices.

get a copy of the Ct scan on disk and search for knowledgeable docs to give you 2nd or 3rd opinions. Make sure you have the right CT scan before you send to Dr. Samji if he is doc of choice. He charges $300 if insurance wont cover it. He read mine within 2 weeks of receiving it. A nurse called and said he would said I did have ES and you usually have a phone consult within 1 week.

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No, not a quitter


Not sure if I had the “right” CT scan. It was CT with co trast and 3D reconstruction. I plan on working on getting copies this week Thank you.

Hi @lcconley24 ~
A CT w/ contrast & 3D reconstruction is fine. It’s just some doctors prefer a CT w/o contrast because they like to measure the styloids themselves & the extra info on a CT w/ contrast makes styloids harder to measure. The contrast makes vascular & other soft tissues visible which can be useful if you’re looking for vascular impingement by the styloids. That said, during the scan, your head has to be in the position that causes vascular symptoms for impingement to show up.

The scan you got should be quite adequate for your diagnosis. The 3D reconstruction will make it easier for you to see what’s going on in your neck. If you want to post some images on the forum, we’d be happy to give you our non-medical opinions as well.

You said it, not a quitter.
Full steam ahead into the storm :muscle:t2::muscle:t2::muscle:t2:
We all are going to beat this thing


I gotta say…I enjoy your posts immensely. I’m not sure why exactly but admire your determination and grit. I’ll take any grins out there. Keep up the good fight!


Thank you.

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