New user, desperate for help with diagnosis

[Deggui]

Hello everyone in this wonderful forum,
It’s truly a blessing to have found this place, as I was feeling very alone in dealing with this issue.
My name is Sebastián, I’m 36 years old and from Argentina. For about a year and a half I’ve been experiencing strange symptoms that no doctor has been able to help me with — some even treat me as if I had psychological problems.

I’d like to know if anyone has information about a doctor in Argentina who performs surgery for Eagle Syndrome (I couldn’t find anyone listed in the forum’s medical directory).

A bit about my story: I was doing regular exercise for several months, and I started to notice strange symptoms — some disappeared, but others remained.
The symptoms that stayed are:

• A weird tightness, swelling, or lack of control feeling between the retromolar space and the tonsillar fossa,

• Twitching of the lower eyelid when I close my eye tightly, along with a visible vein in that eye,

• Trouble sleeping,

• A sensation that my throat closes on one side.

The symptoms that vary depending on physical activity include:

• Pulsatile tinnitus and regular tinnitus,

• A strange sensation in the eye,

• Pain behind the mandibular angle and in the submandibular area,

• A few months ago, I had unexplained pain in the levator scapulae and upper trapezius,

• I also had neck stiffness (torticollis) for several months,

• Neck tension and a feeling of fullness in the ear,

• I suffered from strong panic attacks and shortness of breath while sleeping.

All of my symptoms are on the right side.

I have visited many doctors (ENT specialists, dentists, oral and maxillofacial surgeons, neurologists, physiatrists, etc.), but none could explain what was happening to me — most dismissed me easily.

I managed to get some imaging studies, which I’d like to share here: a panoramic X-ray and a contrast-enhanced CT scan of the head and neck.

After a long search, I came across information about Eagle Syndrome, compared my panoramic X-ray with examples online, and realized that my right styloid process appears elongated and shaped like an “L.”

I would really appreciate your help confirming the diagnosis, since in my country most doctors are unfamiliar with this condition.
As soon as it’s allowed, I can upload the panoramic X-ray and CT scan images.

Thank you very much for your attention.
Greetings from Argentina!

[Isaiah_40_31]

Hi @Deggui - Thank you for sharing your symptoms. I have upgraded your account so you can post your imaging. Our software usually does the upgrade once someone has made a post to the main forum but occasionally it glitches & doesn’t do its job. Please make sure to block out any personal information like your name & birthdate that is on images you post.

I’m glad you are here & hopefully we can help you get a diagnosis & find a doctor.

[Jules]

Some members have been able to see doctors who specialise in head and neck surgery- either head and neck cancer surgery or head and neck neurovascular surgeons, as often they remove styloids to access the neck better, so would be used to performing this surgery. This might be an option to try to look for one of these surgeons near you? Sometimes university/ teaching hospitals are more up on new research and techniques, so again, look into that? It does sound like your symptoms could be from ES, & obviously we can give you an idea when we see your scans- just make sure you remove any personal information…

[Deggui]

Thanks for the response. Tomorrow I have an appointment with an oral and maxillofacial surgeon to see if it’s caused by a retained tooth or if it’s an elongated styloid process. The thing is, my symptoms don’t really seem like they’re from a tooth, or maybe they’re overlapping ( a year and a half everyday symptoms is too much time for something like a tooth) so I assume I’ll first have the tooth removed and then see how things go. I have a tension, a sensation of deep swelling in the submandibular area, but I don’t know if it’s a symptom comparable to Eagle Syndrome.

[Deggui]

[Deggui]

I’m not sure if that’s if this is the slice you need to clearly see the styloid process. I can look for slices higher or lower.. The CT scan was done with contrast to look for tumors and things like that—does it still work? Please ignore my disastrous mouth haha, the ugly tooth you see on top has already been removed (left side of the image, which is actually my right side).Sorry for my poor English, I have a bit of trouble writing, but I can read and understand perfectly.

[Isaiah_40_31]

@Deggui - Your English is very good so no need for apology. You’re very easy to understand.

I’ve annotated your CBCT/panoramic x-ray. Didn’t even notice the bad tooth till you mentioned it.

Your right styloid (left side of picture) is quite curved downward & your left one is growing at an inward angle. They don’t look excessively long but their shape & angle of growth could certainly be causing symptoms. Normal length styloids don’t usually show up in a CBCT scan so that tells you something, too.

I’m not sure which vertebra is in the axial slice you posted though it does look like you’ve got the styloids in the image. I’ll wait for @TML or someone else who’s more knowledgeable than I am to comment.

[Deggui]

in the right one ( left side of picture ) i can see like an extension of the bone you marked, like with an L shape i donr know if thats part of the bone or something else.

[TML]

@Deggui If you would like, you could put your CT files into a google drive folder and send me a link to the folder to take a thorough look at your imaging. You would no longer be anonymous to me, but I wouldn’t be sharing any of your personal information.

[Isaiah_40_31]

The two things I circled are your styloids. The circle on the left of the image is your right styloid & the circle on the right is your left styloid.

[Isaiah_40_31]

@Deggui - I sent your link to @TML via private message.

[Deggui]

Thank you, I had gotten confused and had posted it here publicly.

[Deggui]

i meant the circle i marked here

[Isaiah_40_31]

Oops! Sorry, I missed that. Good catch! That would most likely be a calcified section of your stylohyoid ligament. It looks like it’s calcified separately from your styloid process though styloid elongation is often called stylohyoid ligament calcification. Based on the significant angle between the styloid & the calcified ligament, it’s possible your styloid broke & the lower section has gone its own direction. I can’t really speculate accurately until I can see a 3D image.

[Deggui]

its good news if its broken?

[Isaiah_40_31]

If it’s broken it’s not necessarily good or bad news. Sometimes a broken styloid actually causes worse symptoms, but others it can reduce symptoms. It just depends on what nerves & vascular tissues the pieces are running into in your neck.

[TML]

@Deggui see attached annotated imaging (4 here and 4 in a following post).

At the level of C1 both of your IJVs are severely compressed between your styloids and C1. It’s hard to see your left IJV as it’s much smaller than your right IJV. You have formed collateral veins on the back of the neck, which usually develop due to severe IJV compression.

Immediately below C1, your right styloid is compressing your right ICA. Your left styloid is in very close proximity to your left ICA as well.

Further down, your hyoid greater horns are close to the cervical spine, and so too are the superior horns of your thyroid cartilage.

I highly recommend bilateral styloidectomy where the styloids are cut as close as possible to skull base. Your right side is a priority given that the right styloid is compressing your right ICA and is a risk factor for stroke. As for the hyoid and thyroid, it may be that styloidectomies allow these structures to move away from the spine, but you won’t know until the styloids are out.

I am not a doctor nor radiologist, but hope this helps.

[TML]

[Jules]

Certainly looks like you could do with the styloids being removed, IJV compression is not fun…
If there’s nothing wrong with your tooth I would be wary of having it removed- tooth & jaw pain is quite common with ES as the trigeminal nerve is often irritated, we’ve had lots of members who have tried having teeth removed when actually it’s the nerve causing pain & so they still get pain afterwards. Plus sometimes the pulling & tugging and the neck position needed to remove a tooth can aggravate ES symptoms.

[Deggui]

Thank you all for the quick response. So my main problem is on the right side, as I suspected, but both are elongated. I live in Argentina — I’m not sure who I should see with this information: a head and neck surgeon? A head and neck oncologist?

how serious is it? Could this be the cause of the intermittent tingling sensation I have in my upper back and the pain in the neck?

That’s something I’ve noticed — exercising makes my symptoms worse. It also happened that I slept on my stomach and woke up with both arms numb. I’m not sure if that could be related to this.

I’ve already booked an appointment at a hospital with a head and neck ENT surgeon who has successfully performed a styloidectomy before. I’m going to show him the evidence you showed me — I can’t thank you enough. The styloidectomy he performed was done intraorally, but I think if I have the surgery, I’ll request the extraoral approach since, as I understand it, it carries fewer risks.