Lump under jaw and worsening of symptoms

[Nikita]

Hello everyone!

My name is Nikita, I’m 27, I live in Germany and I started having issues very similar to Eagle syndrome since November 20, 2024.

Here is my story:
My symptoms started on Nov, 15 from strange pressure feeling under my jaw, which I thought as lymph-nodes inflammation.
One week later I have found some swallowing and breathing difficulties, but they were minor.
Then I had a accident when I choked very badly on a tart persimmon that got stuck in my throat and wouldn’t go down. I tried to inhale several times but my throat was blocked, the only thing that helped was leaning down and then I was able to inhale through my nose.

Since the accident it was really hard for me swallow food and especially saliva.
My first really uncomfortable symptom(except swallowing issues) was pressure in the throat, like someone pressing in the area of left and/or right stylohyoid muscles.

From January, 10th I started having weird clicking sound on the right side under my jaw. It hurts after clicking sounds. When I touch the place where the clicking occurs, I feel a hard lump that hurts when palpated for a long time. The place corresponds to projection of stylohyoid muscle and shape of the lump matches shape of stylohyoid muscle.
A few days later the right side of my face and neck was swollen when I woke up - my TMJ, temple, ear, and right side under my jaw hurt.
I could barely open my mouth as it was too hurt in my TMJ.
However, by the end of January mouth opening and TMJ stopped bothering me, but my swallowing difficulties and clicking become worse.
I clearly felt that while swallowing, something on the right side of my throat seemed to be preventing saliva/water from passing through normally.
Sometimes when I swallow saliva it seems to get stuck and press in my throat and this pressing feeling slowly goes down until the saliva reaches my chest(esophagus).

Weird dizziness feeling coming and going sometimes.
From the middle of February I noticed that it’s hard for me to take a normal/big sip of water - my throat seems so tiny when I’m drinking, and I have to make a lot of effort to take a full sip(this feeling gets worse with time).

Periodically I have severe headaches in the temple, ear and back of the head. And also pain in the area on the right under the jaw.
Very often during the day I feel pressure / pain under right jaw, like smth slightly chocking my throat.

I have seen dozens of family doctors, ENTs, and have heard the same answer - “that’s ok, probably some minor viral infection”.
Recently I have done neck CT which showed calcified stylohyoid ligament and nothing else:

On this week I visited another ENT who checked my CT images and concluded that this can be Eagle syndrome and he can cut my stylohyoid ligament. He said he’s done 20-30 such operations per year, but the chances that it will help 50/50.
Has anyone heard of such an operation where the stylohyoid ligament is only cut and not completely removed? Won’t the remains of the ligament with calcifications cause problems/chronic inflammation in the future?

The ENT says that such an operation has minimal risks and has helped restore swallowing in some patients.

I’m feeling so lost I have no idea what is this lump(I’m 99% sure that it’s root cause) that I feel on the right side, is it the calcified ligament, stylohyoid muscle, or can it be calcification of stylohyoid muscle? and my symptoms just keep getting worse…
The more I analyze it the more I think that this lump couldn’t be stylohyoid ligament as the ligament is hidden behind stylohyoid and digastric muscles, and normally I shouldn’t be able to touch it… But I don’t know…

I feel like this problem is too complex and no one wants to try to solve it / able to solve it. I have almost lost hope…

I can’t agree on the operation w/o knowing if the ligament is root cause of my issue and if it’s gonna help by cutting it. I don’t understand how ENT can suggest operation w/o figuring out root cause.

I would really appreciate if you could tell me what this lump on the right under the jaw could be and if you have heard of similar operations on the stylohyoid ligament.

[Isaiah_40_31]

@Nikita - I had a lump under my jaw that led to my ES diagnosis. It was quite firm, & I thought it was an infected gland. When I was diagnosed, the doctor told me what I was feeling was actually my calcified stylohyoid ligament. From my experience, I know it is possible to feel the actual calcified ligament from the outside w/o having to poke around inside the throat.

I can relate to your experience choking on a persimmon. I also had the experience of choking on food because it was stuck in my throat & I couldn’t swallow it or bring it up. My son had to do the Heimlich Maneuver on me to get the food out of my throat so I could breathe.

We have had members w/ calcified stylohyoid ligaments & not elongated styloids. The calcified ligament can cause all the same problems as an elongated styloid. It seems that most of our members who have clicking w/ swallowing have some calcification of the stylohyoid ligament down closer to their hyoid bone so if this is your situation, getting that section of ligament removed could be very helpful.

Did the doctor tell you he would only cut the ligament but not remove it? I can’t imagine that would be his surgical approach. I expect he takes out the part he cuts off even if he doesn’t remove the whole ligament. I think it would be worthwhile to get in contact with him again to make sure you didn’t misunderstand what his surgery approach is. Years ago, we had a couple of members who had ES surgery where the surgeon broke the styloid then left the pieces in the neck. We haven’t heard about that happening in a very long time though. I think doctors have learned that is not a successful surgical approach for ES.

[Jules]

I agree with @Isaiah_40_31 that you need to clarify what the doctor is intending to do- when the styloid is enlarged and removed back to the skull base, the stylo-hyoid ligament has to be cut from it & is often left in place (apparently it can be reabsorbed by the body), and this is fine if the ligaments aren’t calcified, but if yours is calcified then it definitely needs to be removed properly, otherwise it will still cause irritation.
We do have a list of doctors we suggest members ask their doctors, although some are ore relevant to elongated styloids:
Questions To Ask Your Doctor:

1. How many ES surgeries have they done and what was the success rate?
2. Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
3. You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
4. If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
5. There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
6. Will it be a day case surgery or will you need to stay in?
7. Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
8. Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
9. What painkillers will be prescribed afterwards.
10. Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
    If you’re not happy with your doctor’s approach, then I don’t know if you could get a second opinion from one of the doctors on our list? Here’s a link:
    Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle

[Nikita]

Hi all,

Thank you for replies!
The lump I feel is ~0.5-1 cm away from my hyoid bone.
I afraid that it could be stylohyoid muscle calcification and/or muscle spasm instead of stylohyoid ligament calcification as this lump sometimes getting softer / harder and I can sense some muscle tension in the lump when I slowly swallow(but I’m not 100% sure).

@Isaiah_40_31 Was your lump always same firm or did the firmness change sometimes?

Is there any way except CT to verify what this lump actually is before doing operation like lump biopsy to confirm nature of the tissue?

The ENT surgeon said he would make an incision inside the throat and then simply cut the ligament in half leaving both ends of the ligament inside. I asked him twice if I understood him correctly. He said that this operation has no side effects and can either help or not. To me, it sounds very strange that the cut and possibly calcified ligament would remain inside…
@Jules Thank you for the list of questions, I wish I had them when I had doctor’s appointment.
I will try to make appointment with one of the German doctors from the list.

Thanks to @Isaiah_40_31 I was able to open my CT scans in 3D, attaching few CT images where I pointed parts similar to calcification with red arrow.
I’d really appreciate if you could take a look on them! I believe my understanding of what’s calcification and how it looks on CT is completely wrong…

[Isaiah_40_31]

@Nikita,

Your styloids look a little bit long to me but their outstanding feature is how pointed they are - like needles. They both also look like they may be curving inward. The curve & the pointiness of your styloids can be contributing to your symptoms. Looking at the images you just posted, it doesn’t look like you have calcification growing from the lesser horns of your hyoid. The areas where you put your red arrows look like the greater horns of your hyoid. That’s not to say there isn’t ligament calcification, just that what I see looks like a normal part of the hyoid. The greater horns are also noticeably pointed at their ends which I don’t recall seeing before. Can you post any other images that aren’t so close up & are more on the sagittal plane?

Thank you for clarifying what your doctor said. I agree that it doesn’t make sense to chop a piece out of the middle & leave calcification on both ends behind. A consult with another surgeon is definitely in order.

From these images, it doesn’t look like you have IJV compression, but that problem can be created by head position & not always be present. Additionally, it may be the dizziness, etc., when you swallow is coming from your internal carotid artery being irritated by the calcified s-h ligament. It’s hard to know w/o a CT scan to confirm. If you can get the doctor who refers you for the CT to request that it be done with your head in the position(s) that make your symptoms worse, and not just in a neutral head position, that can also provide helpful results.

[Jules]

I do agree with @Isaiah_40_31 's comments from looking at your scans; the styloids do point inwards alot, so could well cause symptoms from that, and that the styloids & the hyoid processes are particularly pointed could cause issues too…looking at that I’d say a second opinion is needed as it doesn’t sound like the surgery proposed is likely to be very helpful for you…I hope that you’re able to see another doctor!

[Nikita]

Thank you so much guys for checking it!
I started trying some miorelaxation medicine(Ortoton forte) and at first my symptoms got a bit better, like swallowing was a bit easier and lump was getting softer(not sure about it), however today throat pressure(in area of s-h muscle) feeling become more frequent and stronger, which feels really uncomfortable and scary… Also the clicking feeling getting more frequent but feels softer / lighter than before. I feel quite sad and afraid

@Isaiah_40_31 I’m adding images for left/right styloids in sagital plane:
Btw, you’re right that dizziness coming after swallowing I find these two very related, usually I start feeling dizzy during/right after I swallow.

And couple of more for left/right styloids in coronal plane so you can see how much they curved inwards:

Thank you!

I have done MRI of soft tissues of neck as well, do you think it can be useful to check it too?

[Isaiah_40_31]

Thank you for these updated pictures, @Nikita. Your styloids look longer in these than in the previous pictures you sent. Unfortunately, your lower jaw is hiding the area where the lesser horns of your hyoid are so I can’t see whether there is ligament calcification extending from the hyoid toward the styloids. Can you change the angle of the images at all or remove part of the lower jaw to reveal the whole hyoid? I’m not very tech savvy so haven’t played around w/ any of the dicom 3D slicer programs. The shape & angle of your styloids could definitely be contributing to your symptoms though.

Your jugulars look ok to me. The right one isn’t showing up as clearly as the left, but I’m not sure what that might indicate.

@Nikita

I have done MRI of soft tissues of neck as well, do you think it can be useful to check it too?

Definitely! My MRV showed compression of my right IJV by soft tissue but my CTA showed compression of my left IJV by my styloid & C1. Again, if you have 3D images of the MRI or can produce some, we’d be happy to tell you if we recognize anything that looks amiss.

[Nikita]

Thank you so much Isaiah on thorough review of my images!
Adding two more images that reveal whole hyoid:
Left:

Right:

I tried to read 3D images of the MRI, but they only show outer soft tissues which doesn’t make sense IMO… Also MRI 3D image does look scary
On below image red arrow points to special ball they taped to my neck(it’s not any kind of tumor) to check that area in details.

[Isaiah_40_31]

From the hyoid images you just sent, your hyoid bone looks ok. The left side could be a little elongated or close to your spine, but I really can’t tell for sure. I think the most striking thing about it is how pointed the ends of the greater horns are & whether those pointed tips could be causing problems, I can’t say. Again, your styloids do look like they could be the culprits based on the angles they’re growing how pointed the tips are.

[Jules]

I do agree with @Isaiah_40_31 !