New to the group and it’s been very helpful reading through the community. A brief intro on my symptoms, I’ve had tinnitus and a constant stabbing pain in my throat for the last 3 years, that increases severely every time I swallow. After a host of investigations over the last 3 years and even an unnecessary surgery (an ENT doctor carried out a uvelectomy which has effected my swallowing and voice) I finally received a diagnosis of Eagle syndrome last week. Like many here the suffering every day is awful and I’m relieved to find a community here.
It was diagnosed after a cone beam CT scan. I was wondering if some one could help read my CT scan? I have the files emailed to me in a folder with Romexis viewer but no idea how to read them. Unfortunately the radiology report I received was very limited and after reading the forum seems like there a number of things to look for. If anyone could help would be greatly appreciated.
I’m sorry that you’re getting such painful symptoms & had an unnecessary surgery, but glad you have a diagnosis now & hopefully can get treatment…
I’m not very good with tech, but we can happily look if you’re able to upload them, this might be helpful: RadiANT DICOM Viewer tutorial - General - Living with Eagle
or Bee Dicom Viewer App for Macs , otherwise I think there are free programs to help you use the romexis viewer online if that’s the problem?
Thank you for the information on the different viewers, Romexis viewer seems to work ok, it’s just interpreting it all I need help with. I don’t have any direct pictures to upload but have the actual files with all my personal information containing the full CT scan
I noticed @TML has done some excellent reporting on CT scans. Would it be possible for me to add my files to a google drive folder for you to have a look at @TML ? Any help would be greatly appreciated
@omsie10 welcome to the forum. And yes, Id be happy to take a look at your imaging! Get it into a google drive folder and then private message me a link!
Hi @omsie10 welcome. I am sorry you have been experiencing symptoms for the past 3 years. I see you are from the UK, if you don’t mind me asking, I was wondering who finally diagnosed your ES and whether you have been offered surgery.
I was diagnosed by ENT doctor in London called Vik Veer. Unfortunately he doesn’t do surgery but was told he will speak to his colleagues to see who can. This was relayed to me via his secretary to me so don’t know much more beyond that at present. Have you been offered suregry by anyone in the UK yet or know any possible good doctors for the surgery?
I paid privately for a consult with Mr Jonathan Hughes in London & also Mr Patrick Axon in Cambridge. Been diagnosed with IJV compression & also my Styloid is against my ECA. Had also been referred to Mr Axon under the NHS and appointment is next week with one of his Team, so not sure what I will be offered yet.
In my non-doctor non-radiologist opinion, I don’t think it’s your styloids causing your symptoms. They are both well-under 2cm and neither are particularly thick. I think the angles of them are also what’s expected. They don’t reach C1, so they can’t be causing any IJV compression at that level. Sometimes they can cause IJV compression between C1 and skull-base though. That is not to say C1 itself isn’t causing compression of your IJVs though. We know that ES can occur when styloids are less than 3cm, but usually they still reach C1 to cause IJV compression, or they go off on a crazy angle or they are very thick. To my eye, yours don’t seem to be any of those things. But I’m not a health professional or radiologist.
HOWEVER, I think you may have hyoid bone syndrome. I have attached an image which shows your left greater horn in very close proximity to your cervical spine. When you swallow, it is possible that your hyoid on the left side is striking or getting hitched on the vertebrae when you swallow. A deep-seated hyoid poses not only a problem with what I’ve described, but also it moves the greater horns closer to the carotid arteries and can come in contact with them. Each time you swallow the greater horns may be scraping against them and the important nerves that run along the ICAs. Your right greater horn is not close to the vertebrae but it may be on a trajectory to the carotids. I say this because my right greater horn is striking my spine, but my left greater horn is the side where the carotids are getting scraped.
I highly suggest getting a head and neck CT with contrast so that we can see your IJVs and carotids so we can get a better idea of what’s going on. Tinnitus is often IJV compression so I’m thinking it could be occurring somewhere in the neck. I am particularly concerned about the potential involvement of carotids with the hyoid.
Based on what I see and my non-expert opinion, if you are considering surgery for anything, I think you’d be better off getting your greater horns trimmed, rather than doing anything with your styloids (unless a CT with contrasts shows direct involvement of your styloids with C1).
I’m surprised you got an ES diagnosis by a CBCT with styloids that are well-within normal length limits. The average styloid length in most population data is 2.5cm. I’m guessing you got the diagnosis because ES is one of the only things that can cause your strange symptoms. But doctors are even less familiar with hyoid bone syndrome and often don’t even think about it as a potential cause of symptoms. But again, not a doctor nor radiologist. But I think a head and neck CT with contrast is a priority.
Given that you’ve already had one surgery which didn’t help, it sounds like you could do with checking the hyoid if it’s close to your vertebrae as @TML believes…especially as your styloids don’t look very long or thick. But unfortunately getting the hyoid horns resected in the UK seems to be harder than ES surgery, we don’t know of doctors doing this, but your ENT might be able to look into that for you. I had surgery with Mr Axon at Addenbrooks in Cambridge , he’s very experienced but wouldn’t do surgery on the hyoid I don’t think…
@omsie10 - Based on the imaging @TML put up, it also appears you’ve lost the lordotic curve in your cervical spine which naturally puts your styloids & the greater horns of your hyoid in closer proximity to nerves & vascular tissues in your neck. Loss of cervical lordosis is a very common problem in our current society because we spend so much time looking down at our computers & cell phone screens rather than having them at eye level. There are simple exercises that can be done to correct the neck curve but it takes some time to do so. Here’s a link to a post with some good information about that:
