CT scan shows elongated styloids but ENT reluctant to diagnose Eagles

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Hello,

I have been reading this forum on and off for years! I thought I’d share my story so far.

For years I have had one sided headaches (right side) which feels like it starts in my neck under my ear and then proceeds up into my face and teeth, forehead and back of my head. These can happen weekly but sometimes even a few times a week ( I think if I’m particularly tense). Along side this, I do get a stabbing in the throat on both sides when I swallow sometimes as well as a common strangling tight throat feeling.

Other weird symptoms are; pulse in ears sometimes if in certain positions or when changing position, tingling tongue, tight neck, hard lump under jaw/ear lobe on right hand side and palpable hard bone like lump under tonsil inside mouth (it makes me gag to feel it but I noticed it one day and panicked - this was what originally took me to the GP a year ago).

There is probably other things I’m forgetting now ha ha but yes, lots of odd symptoms. I have suspected Eagles for a while and went into my ENT appointment (that I waited a year for!) armed with information. The ENT tried to fob me off and said it couldn’t be eagles because I’m not old enough etc etc but I advocated for myself (and cried) and told him how much pain I’m in when I get the headaches. The headaches sometimes leave me nauseous and sometimes get so bad I cry and feel literally like cutting my throat open and ripping the bloody thing out myself :slight_smile:

After having a small meltdown at the ENT appointment he agreed to send me for a CT scan with contrast. I had my follow up today. I went in with my husband fully expecting to be told there was “nothing wrong”. She initially asked me about my symptoms and told me again, “It can’t be eagles because you’re not old enough so have calcifications". She asked if it could be stress related :expressionless_face: I said NO. I told her I actually have a high pain threshhold etc. She told me we could try pain relief but not long term as they have bad side effects. This was the point I just went in and told her I am quite confident this is related to my styloid process and I asked, “are they elongated??” and she replied “Yes they are but lots of peoples are.” Anyway, I said well what good is pain relief if I cant take it long term? and I don’t want antidepressents etc. She replied that “well surgery could make things worse, cause damage…” and all the rest of it. I said that I’m not going to jump into surgery but I’d like to at least be given all options instead of being fobbed off with pain killers.

Anyhoo, she eventually said she would refer me to a specialist to discuss further. My husband was very impressed with my fight! I have the forum to thank for that as I went in armed!

Perhaps I am wrong, I did ask if it was leaning on my artery but she said well its really close but they always are??? She also said I’d be in constant throat pain, rather that sporadic headaches.. ? I also don’t get pain when I turn my head.

I asked if the ligament was calcified and she said something along the lines of “well yes, thats what it means by elongated styloid process.” but I thought the ligament was separate (can someone educate me on this?) She also said they can’t tell with the scan wether its affecting nerves.

Happy to be told that they’re elongated and I’m not nuts but still left with questions!

Thank you in advance !!

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@Soph1 it can be very confusing differentiating styloid vs stylohyoid ligament.

From my understanding there are sort of three forms of ES:

  1. styloid process that is longer than 3cm that causes symptoms (this person naturally has a longer actual styloid)

  2. normal styloid process but the stylohyoid ligament calcifies where it connects to the tip of the styloid process. The combination of the two exceeds 3cm and causes symptoms. (Impossible to differentiate what is styloid vs what is calcified ligament - but it doesn’t really matter since it’s one continuous piece extending off the skull base)

  3. normal styloid process but there’s pockets of calcified stylohyoid ligament anywhere from the lesser horn of the hyoid bone all the way up to just before the styloid.

It tends to be way more confusing than it needs to be. Essentially, what most doctors are interested in, is whether the continuous bone/calcification coming off the skull is longer than 3cm, OR are there any pockets if calcified stylohyoid ligament. However, it’s becoming much more acknowledged by doctors that a styloid much shorter than 3cm can actually cause symptoms since the thickness and angle are important rather than just length

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Also, I’m 27 and male which both go against the “typical” presentation of ES (females and over age of 30), so there definitely isn’t an age minimum for calcification.

Do you happen to have access to your CT?

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No, I was all flustered by the end of the appointment and forgot to ask for a copy. I suppose I could email them but it would probably take another year for them to get back to me (NHS). Thanks for your reply - very helpful :slight_smile:

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So frustrating navigating the health system. Do you happen to have any dental or cervical xrays by any chance?

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Hi @Soph1 I’m sorry you are struggling to get answers under the NHS. I am also UK based and was told that my CT was normal. It wasn’t until a doctor who was giving me pain relief injections into the back of my skull mentioned ES that I found myself on this forum. I contacted the NHS hospital and requested a copy of my scan. They got this to me by email within a few days. You have to download a viewer, but they provide instructions. You could then post some screen shots here. Good luck.

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Thanks Rosie- I will do this. She did say they’re elongated so I’m unsure why she was so against looking further. I’ve seen people mention that their scan showed the pressure on their nerves. It’s so tiring having to advocate so hard when you know they’re just thinking “this gal thinks she’s a doctor”.

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Unfortunately a CT with constrast will not show any nerve compression, but it will show if you have any vascular compression. My IJVs are both compressed by my C1 more on the left where my styloid is longer. Also my styloid is abutting my ECA. All picked up here by other members and missed by the radiologist.

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Unfortunately not. I have a lot of health anxiety and actually also have OCD so I find it best not to have access to records like these for my own sanity. However I may well get a copy of the CT scan.

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Interesting! I think mine is more nerve affecting however I do get pulsating tinnitus sometimes for a short time, particularly when changing position.

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I understand exactly what you mean, here in the UK in the past we have always accepted the doctors word, but things are changing. Let us know who you are referred to. Anxiety is awful, I have suffered with this more recently especially when being made to feel these symptoms are “all in my head”. I believe that vagus nerve compression can also contribute to anxiety, which is one of the nerves that can be affected by ES.

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As a phd clinical psych student I can definitely appreciate the anxiety side of things. But perhaps your anxiety is being caused by something physiological in nature. Probably the vagus nerve. And you may be less anxious if you have the answers. We can help you find the potential answer, or tell you that we don’t think it’s the answer. Either way I think it can be helpful, especially since all your symptoms do align with ES.

But definitely do whatever you’re comfortable with. I think I can help escort you to the ES-specific areas and then we can avoid looking into all irrelevant areas so that you don’t get stuck in it

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@Soph1 :partying_face: :star_struck: :tada: EXCELLENT JOB with the self-advocacy! Your doctor needs to learn a bit more about ES. Our youngest member was 8 years old when his symptoms started. It took 4 years & travels all over the US for him to get diagnosed & even then, his styloids were only 3 cm which in some doctors’ minds in normal length. His mother advocated for him suggesting that in a 12 year old, 3 cm styloids would be elongated & thus causing his symptoms. He had both removed & had great reduction in symptoms.

The definitions @TML gave you for elongated styloids vs calcified stylohyoid ligaments is correct and I will add, that in a smaller person, elongation, angle, curve, etc. can be less & cause symptoms than in a very tall person because of neck length & physical layout of nerves & vascular tissues.

Nerve compression can only be seen via FIESTA or CISS MRI scans & the machines w/ one or the other of those programs are few & far between so very few of our members have bothered to try to get a look at their nerves. We can usually make an educated guess about which nerves are suffering based on the symptoms present w/ the elongated styloids.

Here’s a post made by @Jules which will answer any questions you have about symptoms:

It’s important to know whether you have any vascular compression or not as it does make a difference in which doctor you will want to pursue for surgery when you decide it’s time for that, thus uploading your imaging here would allow us to help you be more informed. If/when you do upload imaging, please be sure to delete or cover any personal info that’s on the images you post.

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Well done for pushing your ENT & finding out that you do have elongated styloids! If you can get a copy of the images that would be helpful…sadly so many doctors are ignorant of this, I was luckily diagnosed at my local hospital, but was told surgery is too risky & the styloids don’t compress blood vessels, which is clearly wrong! So I asked for a referral with Mr Axon at Addenbrooks, & managed to see him. As your ENT doesn’t want to treat you, would you be able to try & get a referral to him?

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Hi Sophie, sorry to hear about your situation. Sounds similar to mine really. But - re. your CT scan with contrast - if you google how to get access to your NHS health records, as I did, it’s pretty straightforward filling in the requet online to them. I had mine within a few days. LIke Rose says below, you can download RadiAnt programme, or similar, and upload the zip file of images from your records (remember to ask them for the IMAGES not just the report!). I learnt from others on this forum - and you can alwys ask for help with doing the above on here too. Best thing to do - to get your images up so people on here can help. I have similar symptoms as you, but sort of reached dead end for now (can’t look further due to caring for partner so can’t go for an op etc.). Good Luck!!

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I haven’t been on the forum for a while but I’ve had a similar journey. I can’t remember my exact measurements but my styloids are something like 3.2cm and 3.5cm and I have discontinuous calcification of the ligaments. I went to see Dr Jonathan Hughes but he wasn’t convinced my symptoms were definitely Eagles and I really don’t like operations so I was really seeking a definitive answer. He said I could have the surgery if I wanted it but wasn’t confident that it would solve all of my issues.

On top of that I went to the eye department with some eye issues and was diagnosed with a 4th nerve weakness that I’ve apparently had all of my life.

Now I don’t know what is really causing my symptoms because I have worn contact lenses since I was 13 and now I’m 41 and started wearing my glasses a bit more and that’s when all my symptoms started although I also had the Pfizer vaccination at the same time and I was having lower back issues so it’s really hard to pin point the definite cause. My symptoms get worse when wearing glasses and better (but not 100%) when wearing contact lenses but my eyes are quite dry now so I’m struggling with contact lenses.

I went to see a local ENT recently who was completely useless and knew nothing about Eagles so it was a waste of time. I’m seeing a Speech and Language therapist next week and I’m really hoping to find some answers there because I’m also considering whether I’ve got TMJ (I don’t have a sore jaw but the muscles are tight and in the day I keep pushing my lower jaw forward). I also feel like I can’t breathe, definitely can’t breathe deeply and my diaphragm feels tight. Sometimes it feels like my entire upper body is struggling to keep my head up. I did consider CCI/AAI at first but I had scans that ruled that out.

I would try to get a SALT appointment if you’re struggling with ENT, they can do scans and a swallow study which might help with a diagnosis.

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@Skatkat have you looked into your hyoid and thyroid cartilage? If they irritate the walls of the carotids they can damage the sympathetic plexus and cause unilateral eye symptoms - droopy eyelid, blurred vision, eye focus issues, etc. if you had a CT with contrast I can help you look for it. Could also explain why you’re jutting your jaw forward subconsciously during the day, in attempts to move the hyoid and thyroid forward and off carotids. Just a hypothesis

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@Skatkat I’m sorry that you’re dealing with quite a few different issues, & can’t get a definite answer for them! Quite a few of us have dry eyes, which possibly could be trigeminal or facial nerve irritation, or maybe inflammation setting off an auto immune condition… (Sjogrens syndrome is an auto immune illness which attacks mucous secreting glands, so dry eyes, mouth & elsewhere are symptoms. There is a blood test for antibodies which can confirm it although if negative it doesn’t necessarily mean it’s not Sjogrens) I use Xailin eye drops which are good for my dry eyes, you can get them otc, are you on any eye drops?
I hope that your appointment next week is helpful :hugs:

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I haven’t heard of that before. I’ll have to look into that. Thanks for the advice.

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@Skatkat - I don’t recall if you’ve ever uploaded your images to our forum. If you’re willing to, we can take a look at them & comment about what we see. Often we find things doctors & radiologists miss or dismiss that are of consequence. If you’d like some unbiased opinions (though they can’t be considered diagnostic since we’re not doctors), please feel free to post some of your images. If you do, please delete or cover any personal information on the images you post. If you’ve already posted images in the past, I apologize for forgetting.

If you want to make your images 3D, you can do so using radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs).

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