I have a really strange symptom I’m hoping ya’ll can maybe shed some light on. In my symptomatic side, I discovered a few months ago that in my most painful area, I have additional tissue or swelling that pops out from under my mandible when doing a chin tuck or moving my neck in certain positions. Palpating it causes sharp pains, and when it pops out, it literally makes a popping sound in my head internally.
It’s in the area of the mandible behind the jaw line, and I literally want it removed somehow during surgery as I know it somehow plays a giant role in this.
Attaching some images as you can quite literally see the difference between my right and left side
That’s pretty bizarre, @etherealcataclysms. My initial thought is maybe it’s a salivary or lymph gland, but I have no explanation as to why it would pop out like that when you look down unless your stylohyoid ligament is calcified & forces it out of the way upon neck flexion. Hopefully someone else will have a better idea.
Thanks Isiah! I hope someone knows too, or even Annino. I don’t believe it’s salivary at this point. Botox seems to have helped ever so slightly in that area so I do think it is some type of muscle, I’m just not sure which one and why.
This is very interesting. Mine is in a lower spot, but what you describe as pain and activity-wise sounds just like mine. Mine is just in front of the jawline. I wonder if it’s the trajectory of our styloid difference. Or if you have some stylomandibular calcifications.
I’m a massage therapist and an esthetician, and I was taking a facial Gua Sha training, and I had to stop having Gua Sha performed on my face. It made the neck bulge very angry. Since I’ve been much lighter, I get less swelling even when washing my face. I’m guessing lymphatic drainage is playing a role in mine. It still will get swollen, but not as frequently as it was.
Can you scale down to just the bones and vessels? It might tell you more. I’m no expert with those programs, but I was able to get mine to do just bone and vessels. The vessels weren’t super clear, but you’d be able to identify more calcifications that way.
@ectocake yes! My bulge typically pops out more so at the corner or my mandible. I have quite a few images with different scales, I really can’t see other calcification other than the styloids honestly. I do know my styloid is literally touching my external carotid in the right, but I don’t think that would obviously cause a tissue issue.
@etherealcataclysms - If your stylomandibular ligament is calcified, I would expect it to show up to at least some degree, but it might also depend on the scan angle as to what’s visible & what’s not.
Also, I notice that your cervical vertebra have a slight kyphotic curve which is the reverse of what it should have. You might want to try some gentle neck extensor exercises to start getting your lordotic curve back. That could help reduce some symptoms & might help stop or reduce the amount the lump pops out.
This link contains some exercises that can help with that:
Thanks so much! I saved that link to check out this week. I actually did PT and found it helped my neck a lot. However I’ve had to be careful with stretching because it can cause a weird pain flare below my ear/behind my mandible area. It’s so odd.
I almost wonder if your styloid is pushing your masseter out of place or causing the masseter muscle belly swelling. Does it get worse when you chew? I’ve switched to a mostly soft food and liquid diet at this point since chewing anything triggers intense pain for me. I am just throwing guesses at this; I am certainly not an expert.
Now that I’m examining the musculature, I think mine may related to my mylohyoid muscle. Again, my swelling incidents are less frequent since I’m not doing gua sha anymore and not eating a whole lot of solids. But I did notice I’m puffy there again this morning. I woke up sleeping on that side, and I have to get better at controlling how I roll around while I sleep. I bought a pillow system but haven’t quite gotten used to sleeping on it the whole night yet.
Edited to include I also get popping and crunching sounds while eating but they are more behind the ear. When I try to look down and to the left, I get an intense crunch and shooting pain. It feels like the crunch comes from my hyoid bone.
Oh wow! Yes! I eat relatively normal foods other than super crunchy I would say (I’m on braces for lower jaw surgery later this year). I went to a movement neuro today and she is sending me to a movement specialized ENT to do imaging of the tissue. She definitely thinks it’s tissue and not a salivary gland. I’ve had several other doctors tell me they think it’s my digastric muscle.
I’m not sure how long it will take to get into the ENT, but I may end up seeing Annino before him and ask him for the imaging.
@Rlr286 - You can also upload your scans to dicomlibrary.com & it will anonymize your images, render them in 3D & give you a link to share if you want anyone on this forum to look at your pictures or if you want to share them in a public thread like this one.
I had to call emergency services at weekend, moved neck to right and suddenly excruiating pain in jaw, could not move head or talk, and could not get pain to stop, like an electric shock, BP went through the roof, after ECG, bloods etc, they left me, said hospital could do nothing, as I need surgery, but as the pain subsided, was told, not an emergency. Frightened now to move my neck. I guess its surgery or no help. Living in the hope that the surgeon I am seeing in 2 weeks will agree, oh my god guys, why is this happening to us, never get a rare syndrome! Sending hugs to those sufferers out there
So sorry that you had that happen, hopefully on your notes & will be taken into account when you have your appointment…some members have tried wearing soft collars to minimise head movements so that might be worth a try?
That’s super scary @Haddo! I’m so sorry that happened. At least you know now to be very careful w/ neck movement. I second @Jules comment about trying a soft neck collar. It won’t stop you from moving your neck, but will be a reminder to be careful & can provide some good support so your compromised neck isn’t fully holding the weight of your head. They are sold on Amazon among other places.