How to identify styloid in this pano x-ray & get diagnosed?

Hello, (x-ray in reply)

I’m new. I’m 19M, and been suffering from headaches, neck/ear/jaw/eye pain, as well as having tongue cramps, slight face droop, & dizziness (everything on the right side)… It’s also ruining my sleep: when I wake up it feels like I didn’t even go to sleep. It started with headaches, neck pain, & sleep issues in June and has gotten progressively worse since.

It’s all based on the posture of my neck and seems very much like Eagle’s (or possibly TMJ). If I keep “proper” straight neck posture, massive headaches & eye pain. If I have a forward head posture or tilt my head to the left, no pain at all.

I’ve visited several PT, Chiropractors (oops), and Dentists, but none knew what was up. Now that I’ve discovered Eagle’s, I feel like I have some clarity.

I have a panoramic X-ray, and I think my styloids seem very long, but I just want somebody else to look at it and give their opinion. EDIT: Posted X-ray below. I’m very confident it is Eagle’s though.

I have an ENT appointment in Texas on Feb 9th, can he diagnose it? I would like to get into surgery ASAP because I’d imagine I’d heal quickly being so young, and the symptoms from this are making grad school insanely difficult and ruining my quality of life. I just really need help because this is one of the most painful things to deal with. I cry a lot because of the pain and with the sleep issues and constant headaches & head-swimming-feeling I don’t feel like a normal human most of the time.

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OK-- I figured out how to upload. I’m concerned about my right side (left side on the photo). I think you can see the styloid directly to the left of my jaw, but I’m not really sure if that’s actually what it is.

The pano was for wisdom teeth surgery, but I opted to hold off on that until I made sure it wasn’t TMJ or Eagle’s because I’ve heard of nasty things happening if you get wisdom teeth removed first.

Hello NGage!

I‘m very sorry for you suffering from so much pain. But I’m sure, you will find a lot of support from all the members in this forum!
An panoramic X-Ray is sure a beginning.
But it would be great, if you could get a CT with Angiography!
Your right Styloid Process is for sure longer than the left one!
I‘m not sure, if the little dark line through your Styloid could be also a fracture, or the beginning of a calcified ligament, or if it‘s an artefact. Maybe @KoolDude can help also…
Did your Symptoms have a rapid onset?

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Yea, these past months have been hell…

I’m going to try and convince the ENT to let me get a CT on the 9th. I will ask for the angiography. I’m new to the whole “going to doctors” thing so I’ll try my best.

And, more or less rapid onset.

June: Noticed changes in vision, switched from contacts to glasses due to pain.
Neck pain started too. Sleep quality noticeably diminished.
July: Daily headaches, very strong pain in neck, stabbing eye pain (like a knife coming from inside my head, out my eye), dizziness (well, it was strange, it felt like the floor would drop 5 inches suddenly, but also generally felt… spacey?)
Aug: At this point, daily headaches have gotten a lot worse.
Sept-Nov: Jaw pain, sharp ear pain
Nov/Dec: My tongue would cramp up and over on the right side, as well as shoulder pain and the neck pain got much worse. This is also when my sleep got super bad. I would wake up like I just pulled an all-nighter.
Jan: My headaches, spacey-feeling, and neck pain have been at their worst. My sleep has completely deteriorated too. My right eye also now has a “burned in” look sometimes (like when you rub your eyes too hard and it’s super bright/washed out). I also noticed around this time (but could have been before) that my right eye is “droopy”. The whole right side of my face from my eye to the corner of my jaw feels like your face feels after a drink or too, just kinda rosy and staticy.

EDIT: I should also mention that my entire neck feels like its out of place, I can only describe it like the “wires & cables” have been all tangled up. My throat looks centered but it feels like its shoved to the left.

I don’t know if that’s rapid onset, but this is generally the timeline of things. I’m sure there are other symptoms I’ve missed too.

ES sure is a chameleon! You‘re symptoms absolutely make sense and fit Eagles.
Some of your symptoms seem to be vascular though, like the space perception disorders and lack of refreshing sleep as well as headaches…
Any trauma before onset?

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No trauma at all. The worst thing I’ve done is I’ve developed a forward head posture from work/school/gaming on my PC. But no accidents or anything of that sort.

I wore night-time contacts (reshaping your eye to allow better vision) and they suddenly got more painful each night, and eventually, I just switched to glasses, at which point all of the symptoms started cascading.

I think the vascular symptoms may be related the the ES as in, its constricting blood flow or something. Because if I straighten my neck properly (and properly position my tongue) I get dizzy and have eye, neck, and headache pain.

Don‘t think, the contacts caused it.
You can search the forum for symptoms and there are also many posts concerning head and neck posture…
Mostly, you can‘t really tell the reason.
For sure you did a great job finding out about ES and getting here!

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I actually developed the neck pain as I was trying to correct my neck posture, now that I think about it. Trying to hold a straight neck was painful and I thought it was because I had spent so much time with bad posture… hopefully I didn’t fracture my styloid as a result.

How can I go about getting diagnosed and get into surgery the fastest way (assuming I can get diagnosed)? Or, do I even need a diagnosis? Do I just cold call surgeons in Texas? I’ve never dealt with doctors before and I finally have a job with health insurance so I’m still figuring this all out. I’m still just a student and I can’t afford much (I don’t want to go from GP->PT->bounce around ENTs etc.) so fewer visits are better. But, at this rate, I’m willing to drain my savings to fix this. I can afford a pretty decent amount and definitely afford the surgery, but if I bounce around consults and imaging I may not be able to afford the whole treatment.

Please don‘t worry about what you‘ve might have done… it‘s not your „fault“!
Since I‘m not from US, I can‘t tell you about the exact procedures…

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@ngage as @Eaglefatigue put your symptoms fit a typical Eagle Syndrome. Your right styloid might be compressing nerves and vessels. The only way to diagnose it first, is to get CT Scan of the Neck & the Head with contrast. Then they can measure the styloid and see if it is compressing vessels that way you can go to the next step which is typically a Surgeon hunting (Many too choose in the US). There are a number of good Surgeons in the states unlike where I am (Canada). So I would suggest that you get CT Scan first. We can also help identify if your styloids are causing some of your symptoms since many folks here are familiar with the CT Scan signs of Eagle Syndrome.

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It definitely sounds like a CT with contrast- where they put dye into your blood vessels for a CT scan- would be useful to see if there is compression. If there’s a head position where you feel the symptoms come on it’d be useful to get the CT done like that, but it’s not always possible. Can your PCP get you a scan organised? It needs to be of the head & neck, down to the thyroid cartilage, & request that it’s evaluated for ES (that means they should look at the length, width & angle of the styloid processes, and look for any calcification of the stylo-hyoid ligaments.)
Some doctors do phone consults if you can send the CT report & images to them, it’s worth calling the doctors on the list to see about that. If you have to see someone in person, then I’d definitely ring beforehand to check that they do still treat ES as we have found occasionally they don’t anymore.
Some members do travel quite a way to see a really experienced doctor; if this is something you want to do we can advise you the best docs to try.

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Yep, a proper “straight neck” head position can immediately trigger heavy symptoms.

And- I’m willing to travel, (although within/near TX is best) where can I get a list of the top recommended doctors to get treated? And, that’s after I get the CT done at request of PCP, correct?

ngage,

Even though we have a number of doctors listed for TX, we have found them to be very inconsistent in their willingness to treat ES so most of our TX members end up going out of state for surgery. Dr. Milligan in Phoenix is very experienced w/ ES. Dr. Nuss in Baton Rouge has also done a number of ES surgeries. Dr. Hepworth in Denver is one of the most experienced US doctors in dealing with vascular ES which it definitely sounds like you have. Dr. Samji in CA & Dr. Cognetti in PA both do video consults for a fee which health insurance often helps pay for. Either one would be a good diagnostic resource for you once you have your CT scan in hand.

On the home page for this site there is a category called Patient Self Advocacy. I highly recommend you read the info there before jumping into calling doctors for help especially since this is a new arena for you.

We are all here for you, every step of your journey. Please stop by often for support, encouragement to vent or whatever you need. :hugs:

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So I should just request a CT scan with contrast, per the way Jules described it?:

…of the head & neck, down to the thyroid cartilage, & request that it’s evaluated for ES (that means they should look at the length, width & angle of the styloid processes, and look for any calcification of the stylo-hyoid ligaments.)

And should I ask my PCP (haven’t seen in a while) or should I ask the ENT I’m visiting on the 9th? or do I just cancel the ENT consult and go to PCP for the CT?

This is really good info, thank you.

I am definitely willing to travel out of state for this, so I’ll try and get video consults set up after I can get a CT scan somewhere.

And, yea, I definitely need support. I just got off the phone with my mom explaining how I am finally finding a path to resolution and she still doesn’t believe I had most of the symptoms I had… made me really, really sad and frustrated…

That’s really frustrating when your family don’t believe you- we do hear that quite often unfortunately… If your PCP can organise a CT you could do that, not sure of the system in the US. If it’s quicker to see the ENT first you could do that. (Sorry, I’m UK, we can only get CT’s through a referral to a specialist which really delays things!) Maybe ring to see?

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ngage,

The CT Jules recomended can be Rxed by the ENT. I would call the ENT’s ofc this coming week to ask if (s)he is familiar w/ ES. If the answer is yes, & you go in & discuss it, but the ENT tells you that your symptoms aren’t consistent w/ ES (we’ve found this to be problem w/ our TX docs - they only think certain specific symptoms define ES), I would still pursue getting referred for a CT scan w/ contrast. If the request is declined then go see your PCP with the request. Sometimes getting what you need requires a bit of polite pushing & persistence on your part, but it pays off in the end.

I’m also sorry you’re not getting support from your mom, but lack of family understanding & support is unfortunately a common theme here. Just know that we’re your “family” who understands!

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Understood. I’m reading the patient self-advocacy stuff too-- but what do you recommend specifically for navigating that conversation with the Texas ENT? I’ll call them tomorrow to ask about ES but if you’ve got any advice on that specifically it’d be a great help, I’m still new to talking with doctors.

We’ve learned here that going to a doctor w/ a long list of every symptom isn’t helpful for you. Doctors prefer brevity of description of symptoms & often become overwhelmed by a long list. Some will suggest the problems are stress, mentally or emotionally based & will send you off for psychotherapy. Keep your list to the symptoms which you feel are the worst.

For example: Present a brief history from onset to present i.e. Symptoms started last June w/ visual changes & eye/headache pain, escalated to daily headaches & dizziness over the summer, & in the fall/winter, jaw & ear pain began along w/ tongue cramping, neck pain & facial tingling (or however you’d describe it).

Mention that you have a panoramic x-ray where the right styloid is visibly elongated (bring a copy of your x-ray image either on a disc or hard copy (maybe print a copy of the pic @Eaglefatigue magnified) & mention that you suspect you have Eagle Syndrome. Ask the doctor if (s)he is familiar with ES & if so, what the recommended treatment is (surgery - removing the styloids as close to the skull base as possible & removing calcified stylohyoid ligaments, if present - should be the answer…nothing else will do). Interim nerve pain meds can help w/ some symptoms & some of our members w/ vascular ES have found that taking a blood thinner than help reduce the vascular symptoms until time for surgery.

DO NOT be discouraged if you’re dismissed. That is not uncommon for ES patients.

FYI - the cranial nerves affected by ES are the facial, trigeminal, glossopharyngeal, accessory, hypoglossal & vagus. You can get some great basic info about function & symptoms of dysfunction for each nerve by watching the series called Two Minute Neuroscience on YouTube. There is a short video for each nerve.

You have a lot on your plate w/ your college course load. I hope you’re able to get the ES situation diagnosed & taken care of ASAP!

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@ngage I think Isaiah & Jules gave the best advice on next steps. Bottom line is that ES can’t be diagnosed with Pano-X-Ray alone even if the Styloids were visibly elongated. You need CT with contrast that covers the Neck and the Head area. Preferably if your ENT can request it since they specialize the area of interest. If ENT does not see anything wrong with it, then we can assist to have closer look at the CT and if they missed something which is way too common with this rare Syndrome.

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