Understanding CT Scan Narrative

General
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Aloha from Hawaii. Brand new here, but so happy to have a friend that pointed out this forum. A quick summary is in my profile. I’m at the very beginning stages of diagnosis. Saw an ENT last week who is nearly certain my symptoms are from ES. Had my CT scan today. No one in the radiology department that I spoke to had ever even heard of ES. I got the scan narrative back this evening and my heart sank a bit because while I don’t wish this on anyone, I was in high spirits to finally have a diagnosis after so many years of various symptoms, all aligned with ES, but when I got the CT narrative, the results say indeterminate and I was hoping for something more concrete. I know that indeterminate just means it isn’t cut and dry clear, but for the pain when swallowing, the visual hyoid pushing into my throat during the laryngoscope the ENT did, the list of exact symptoms I deal with, it was a result I wasn’t expecting. Did anyone else have this kind of result and still turned out to be ES? I’ve pasted to art of CT narrative below. Not looking for a diagnosis here, just if anyone else had this kind of result early in the game and what their next steps were. I’ll be having a follow-up with the ENT to also discuss.

I just want relief… I can’t continue with this being “just how life will have to be”. Im not okay with that. Thank you to all, in advance!

From CT Scan:

FINDINGS:
Discontinuous calcifications at the bilateral stylohyoid ligaments, slightly more extensive on the left relative to the right, extending to the level of the palatine tonsils.

IMPRESSION:
1. No acute or suspicious findings in the neck. No
visualized discrete aerodigestive tract mass.
2. Discontinuous calcifications at the bilateral
stylohyoid ligaments, slightly more extensive on the left relative to the right. Appearance is indeterminate for clinically suspected Eagle

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The definition of Eagles is either elongated styloid processes &/ or calcified stylo-hyoid ligaments which cause symptoms- so as you have calcifications on your ligaments, & if you have typical Eagles symptoms, then that should be a clear diagnosis.
There are treatments which can help, & some members have been able to live with ES like this, but surgery is the only permanent solution. There’s info about treatments in the Newbies Guide Section, & you can search for ‘what to expect after surgery’ & look through past discussions, there are lost of recovery stories so you know what to expect.
It can be a tricky surgery; it’s good that your ENT spotted this as many don’t know about it, but for surgery it’s best to see someone with experience. In the Doctors Info Section we have a list of doctors familiar with ES, there’s a doctor in Hawaii who has done surgery, otherwise Dr Samji in CA is very experienced. He does phone consults & will review CTs, so if you ENT is concerned about giving a diagnosis based on your CT result, you could send the scan & report to Dr Samji.
Here’s a link :
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Hope this helps, & let us know how you get on!

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I strongly agree with all Jules said. Since you already know the radiology staff is unfamiliar w/ ES, I’m wondering if they had to Google it to write the CT report. :stuck_out_tongue_winking_eye: At any rate, wherever they got their information, it wasn’t complete, as discontinuous calcification along the styloidhyoid ligament is ABSOLUTELY ES.

Calcified stylohyoid ligaments “tether” the hyoid bone & don’t allow it to move freely as it needs to during swallowing, breathing, coughing, sneezing, etc. That in itself can cause pain plus the calcifications can rub on or compress nerves in the area which can cause many other symptoms.

Sadly, even some of our most experienced ES surgeons only look for elongated styloids & discount calcified ligaments as inconsequential. As time has passed, I’ve learned that Dr. Samji may be one of those surgeons. Getting his opinion is worthwhile, but don’t be put off if he declines to meet w/ you (either in person or via video consult) as he has turned away others who lacked elongated styloids but had calcified stylohyoid ligaments.

Persevere! Our forum has many helpful resources & amazing members who will support you as you press on.

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I am so sorry to hear about your suffering! My daughter has suffered for 7 years now. DO NOT trust radiology reports! My daughter had one done in 2016 and not only did the report not contain any findings but the doctor who ordered it trusted the report as well. This year when Dr. Hepworth’s PA, Alison Love, reviewed the 2016 scans she (and even I) could clearly see bilateral jugular impingements! I would highly recommending scheduling with Dr. Hepworth, here in Colorado, if you can. They are so diligent and very caring and compassionate.

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I agree with NAWAS about radiologists. I had to badger our local hospital into having my CTA read and re-read and re-read and they only got the identification and measurements of styloids right after I sent them a copy of a standard CT from another hospital where the styloids were correctly measured by a neuroradiologist. I had to teach myself how to use 3D Slicer so I could see them and measure them myself and send screen shots to the head of the radiology department so he could see what the radiologist missed. It was pretty crazy - I sent them an MRI that the same department had done that showed an internal jugular vein squished into nothing recognizable by a styloid I could see and the other styloid rubbing on an internal carotid. Referenced image numbers and drew red circles around important features on screen shots and they finally produced an accurate CTA report. By that time, I had already sent screen shots to several surgeons. Do your own research. Don’t be discouraged - I saw at least 10 different doctors to get my styloids acknowledged and removed. Thankful for all the support from Jules, Isaiah, and group members to keep me from going crazy.

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Ill chime in and agree also with everything all has shared. The fact you said the radiologists never heard of it was a clue to me where it was going to go. It doesnt sound like they gave you any measurements. You are lucky to have an ENT that recognized this. Getting a diagnosis is 75% of the battle. The rest is finding the right surgeon or ES specialist to read the scan and give you an expert opinion so you can decide how to proceed.YOU are in the perfect spot to get patient input on this. We have all walked the walk and can speak from experience.
Per Dr. Samji, when he read my scan in front of me, he explained the CT scan is done in slices and software interpolates between the slices. Just because the radiologist states the calcifications are discontinuous, doesn’t mean it is so. Often times due to interpretation, it is in fact continuous and usually longer than what the average radiologist measures. The ES surgeon reads the scan and they also do the surgery, more times than not it is longer and continuous.

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WOW! You sure did your due diligence , Catmd, & it paid off! Thx for sharing that information. I’m sure it will be encouraging for anyone on our forum who’s fighting to be heard by their medical community. Perseverance pays.

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Great job of advocating for yourself! And educating the radiologists! :smiley:

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Thank you so much for your response. I’m having a “bad” day with this today, so I found it reassuring. I finally will have my ENT tele-visit tomorrow to go over the results. I’m actually hopeful that she recognizes it more, since yes, she spotted it right away, even before my exam, as I’d described symptoms I’ve had for nearly 18 years all the way to symptoms I just started to experience this year.

Honestly, I kept telling my regular physician different things that would happen to me and he had no clue to their cause. I started feeling like I’m crazy or he thinks I’m a hypochondriac… For example, I’ve complained to my doctors for 18 years about headaches radiating from the back left bottom part of my skull, but then 2 years ago I had a really weird episode while at the dentist, laid back in the chair, I immediately felt a hot flash in my face, the room was spinning, and I couldn’t focus my eyes. They wanted to call 911, but it relieved itself within about 10 minutes. This happened a couple months later when I was bent down doing some work at home and stood up quick, and another really bad case of it when I went on a hike up a mountain ridge, I reached one point where I collapsed with the world spinning, hot flash, pinpoint vision and nearly blacked out, I had to be helped back down off the mountain. Then about 4 months ago, just sitting in a class, I started spinning again. About 6 months ago, I started having hearing issues in my left ear, where the world sounded muffled, like my left ear was in a paper bag. This did not come or go, it lasted weeks, then diminished but still returns a couple times a week now. Then about 4-5 months ago, I started having trouble swallowing. I can’t look right and swallow without significant pain on my left and something physically “popping” in my throat. I can look left okay, but when I look right, it feels like my neck and throat are being stretched like a rubberband, and I get a dull pain at the base of my skull. Just those symptoms alone is what made my ENT say (literally), “Oh my god, I know what you have. You need to go home and look up Eagle’s Syndrome”. She then did the scope, had me press my finger on my throat where it hurts and pops, and there on the screen was a massive bump of bone or something pushing into my throat. That’s when she said, “Yep, Eagle’s Syndrome”. She ordered the CT scan to confirm.

That’s when I posted here, after I got the initial radiology results, because I was expecting a note confirming, clear as day… I can’t seem to find anyone throughout my entire medical center (I go to Straub here in Honolulu) that has ever heard of it except this one ENT who wasted no time identifying the issue, almost as though it was something she did a thesis on in college, that’s how certain she was. There’s other symptoms that I didn’t even mention to her or my doc because they’re more infrequent, but one is occasionally when I yawn, it’s like my jaw gets locked forward like if I had an underbite, except it’s not and it’s just the muscles or something in my throat making it feel that way with extreme pain where my chin meets my neck.

I appreciate everyone here and all the encouraging responses people have given. Especially about recovery and such. I’m a public speaker and professional teacher, so this affects my ability to even work, and I’m fully booked all the way through early December 2022, so I can hopefully find relief soon. I can always reschedule myself for whenever I can get the surgery, but I can’t be out for a long time.

Thank you again, and after my ENT video call tomorrow, I’ll come back with an update. If it’s not as clear cut as I hope, I’ll start seeking a second opinion from one of the recommended docs here, but I’m hopeful that since she was so quick to call it ES, that she may be a new ENT for people with this in Hawaii. She’s fairly young for being an ENT who also does surgery, so she may be just getting started in her practice here.

Mahalo Nui Loa!

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Thank you so much for your response. I have my video follow-up to go over the CT results, with my ENT tomorrow morning. I posted more of my experience in this thread as a reply to Jules, so I’ll save us all from typing it out again. I just wanted to send a personal “Mahalo”.

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Thank you for the reply. I’m always up for a trip to Colorado! haha. I grew up in Montana until I moved to Hawaii in 2012, so I take every opportunity to go back and visit the Rockies when I can… just this wasn’t the reason! I have a follow-up tomorrow morning, so hope to have an update then.

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I love Hawaii! Best of luck with your follow-up. Keep us posted!

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Thx for sharing the background of your symptoms. I had the same headaches you get i.e. at the skull base kind of where my styloids attached. I’m happy those are gone now. Though many of my symptoms were different than yours, I expect having your styloid(s) removed will go far toward helping your symptoms resolve.

I haven’t been to HI since 1989 but I have been to Montana this year. I love both places but I think MT wins. Used to think I’d retire near the ocean but there’s just something about mountains that has more appeal to me now. :upside_down_face:

Looking forward to hearing about your appt tomorrow!