I just found this site today so I don’t know if I’m doing this right, apologies!
So I was just told I have bilateral calcification and elongated styloid bones by my doctors.
But I’m unsure if my symptoms are explained by this diagnosis.
I’ve had mild neck pain for a while, but one morning in Jan I woke up with excruciating neck pain that’s ruined my life.
It’s sharp and angry feeling, travels in to shoulder blades, causes my muscles to tense up, and doesn’t respond well to PT. It waxes and wanes in intensity but never fully goes away. I have limited range of motion, lots of tingling, nausea and dizziness, strange blood flow issues, pain when | yawn but not when I cough or sneeze.
Things I’ve had for a while, that predate the extreme neck pain- random ear pains that aren’t infection related, sore pain in teeth that has nothing to do with dental issues, more mild neck pain.
I’m nervous that the long running mild stuff is Eagle syndrome, and the intense stuff is something else. Because I also have wear and tear/age related stuff like forminal narrowing and arthritis, bone spurs etc. But the doctor l saw for that said it’s all pretty mild, and the pain acts weird-for example, massage is a huge no go, I can’t stretch or it gets way worse, etc.
I’ve never had pain with swallowing or throat poking or anything like that.
Thank you for any opinions you guys might have here
Welcome @AnemoneCat! I am so sorry you are dealing with neck pain and it sounds like you share alot of symptoms I have seen people share here, including myself! I am also sorry a doctor told you it was “mild” when it’s clearly impacting your life greatly.
Well, the “mild” throws me off because… is it the styloid process causing it?
My ENT said we should do another MRI to see what structures could be being impacted, and then a diagnostic lidocaine injection to see if that causes a cessation of symptoms to confirm Eagle syndrome as the cause of the pain.
he then said there’s an ENT on staff where I live in Hawaii that’s done “14 surgeries, the most in the state” for Eagle syndrome, which… id rather go to an expert but I’m in too much pain to fly I think.
Hi. Other folks here are far smarter than me about this stuff, but I believe the “gold standard” test for looking at your jugular veins is a CT Venogram of your head and neck (all the way down to the clavicle), with and without contrast. It can be tricky to get one – I had what was supposed to be a CT Venogram and Angiogram last summer, but somehow only got the Angio part (showing my arteries, while the venogram shows your veins). I had to jump through hoops to find someone in CA (where I live) to prescribe it, then appeal the insurance denial (they thought I’d already had one).
I would really urge you to get to a specialist if you can, and not a “regular” ENT. This is such a delicate (and rare) condition, it’s not like a broken arm where any ER doc will do. Dr. Hui (I think?) is a surgeon who operates in Hawaii. Someone else here will know. I would send him the imaging you have so far and ask what he thinks. His office presumably would know where to get proper testing, etc. Hang in there, t.
ES symptoms vary depending on which nerves are being affected, so tooth & jaw pain is common from the trigeminal nerve, ear pain from the glossopharyngeal nerve, and also shoulder pain from the spinal accessory nerve. ES can cause alot of pain in the neck, sore or stiff muscles, limited ROM…not everyone has the pain or difficulty swallowing or feeling of something stuck in their throat, I didn’t ever have either of those. Symptoms can vary in intensity too, and wax & wane for no logical reason! Dizziness could be a vascular symptom so @tkk 's suggestion of a CT with contrast isn’t a bad idea- it shouldn’t be that hard to get the CT imaging done to time it for the arteries and veins, strange that you had trouble with this @tkk !
MRIs don’t show the styloids very well, but could possibly show if there’s issues from the bone spurs, so might be worth doing. Some doctors like to use the lidocaine injections as a diagnostic tool, but this doesn’t always work, so can’t really confirm ES for sure, if you have this done be aware of that.
It’s certainly worth seeing a doctor with experience of this though, Dr Hui has been mentioned quite a bit on here but I think he’s a radiologist who has been suggested for testing, I’m not sure that he does the surgery?
I don’t know about Dr Scott Newman who is also on our list for Hawaii, I found a couple of mentions in the past discussions, one mentions that he’s moved, but a quick google search looks like he is still there!
Dr Newman isn’t my ENT, but he is the one that would be doing the surgery if I have it! They said he’s done 14 ES surgeries. I’m so nervous about this whole situation I feel like even still I should get a second opinion but it’s making me feel a lot better that he’s mentioned positively here when I search his name.
This whole thing is a lot for me to process. My stomach is in knots.
It is very overwhelming to be diagnosed with something so rare (and hasn’t been studied very well!). Allow yourself grace and feel all the feelings about it!
@AnemoneCat - The only thing I’ll can add to what @Jules mentioned is that nausea & other gastrointestinal issues are often caused by the vagus nerve being irritated by elongated styloids &/or by compression of the internal jugular vein(s) since the vagus nerves sits in the carotid sheath right next to the IJV. When there is IJV compression, there is usually also vagus nerve compression, thus, the suggestion of either getting a CT with contrast or a CTA/CTV to check for vascular compression is good. You can Google images of the nerves Jules mentioned plus the vagus nerve to see where they are in the body as that will help you understand why you have pain in the places you do.
This is strange! Because I had a CT with contrast, that’s when they told me I had calcified ligaments. And they want to do the MRI with contrast as a follow up to the CT. Does that make any sense with what you guys know??
An MRI with contrast I don’t think would help show anything different, unless they were looking to see if there’s any compressions of blood vessels by nerves instead maybe
I would do some research before agreeing to a contrast MRI- I believe that Gadolinium is used as the contrast agent & this can have side effects & long term impacts, we’ve had some discussions about this: My other and strange unresolved symptoms, thoughts? - General - Living with Eagle Gadolinium contrast - General - Living with Eagle
Did you get copies of the images from your CT with contrast? If so feel free to upload them here (with any personal info removed) - we’re not doctors but can sometime help members see issues which sometimes radiologists miss or dismiss!
