New here. Very glad to fin this warm community and to know I’m not alone in this journey (while I don’t wish these issues for anyone).
I’m 35 YO F based in Serbia. I have a looong story of pain, last year spent bedridden and recently been (mostly self-)diagnosed with Eagle.
2 maxiofascilar and 1 skull base surgeons I see are telling the calcification is big enough to cause some symptoms. I even had an intraoral injection and another one from outside ear styloid are and they provide relief from pain there. But experience severe 98% of time one-sided heaviness in my head, feeling of pressure from the inside, loss of coordination etc. I have severe progressing weakness in my arms both trigger by my jaw position. I’ve been diagnosed with severe dysautonomia and these symptoms depends from position of my head.
So, here my question - I would absolutely like to have another opinion on that. I already texted Dr Kamran Aghayev but much probably need one more. Who would you recommend for that? It looks like the question of vES and some stuff inbetween my ICA and ECA.
Both IJVs on my CTA scan are appear to be narrowed but the blood flow presents on axial images. Styloids don’t cross the veins, it’s some muscles cause the narrowing (probably digastric). Still doesn’t explain my one severe mostly one sided symptoms. And there is one that sits suspicious thing in between my ICA and ECA close to carotid sinus which looks like some lymph node or may small schwannoma or smth else. Still, nobody is concerned about this expect me and GP (who actually worked as cardiologist in ER for 20 years so pretty much familiar with dysatominia and vascular symptoms).
There is also could be smth that both me and my GP are missing bc I still haven’t done MRV for example and all my examinations were perform in static position (except tilt-table).
Does dr Osborne experienced in diagnosing such stuff? I read he is maybe the easiest to reach out online but don’t know how he can help me with my case. And what about Dr Constantino and Cognetti? I see they do onlines - how long it’s usually take to get a consultation? I’m not sure I can go to US bc of long waiting list for visas and I’m actually unable to travel. Istanbul is much more realistic option that I consider.
@eggisnotaplant sounds like there could be a hyoid bone issue since haw position triggers weakness (weakness could imply a vasovagal response which can occur due to carotid artery compression/irritation).
If you want, you could private message me a link to a google drive folder with your CTA files in it and I could take a look at it all. You would no longer be anonymous to me, but I wouldn’t be sharing any of your personal information to the forum. I’m not a doctor or radiologist, but my input has been helpful to some members. Just let me know!
Hi! I actually read your story and research! I absolutely share your point about vasovagal reflex on the first place both in your case and mine rather than just a IJV compression, moreover mine don’t look obstructed.
I checked my scan in 3D fot some similar issues with hyoid - looks fine but still worth to double check it. I’ll DM you if you don’t mind,
Oh, and just in case - forgot to attach my awesome styloids. The are not even prolonged - both are 5-10 mms at all? But there is calcification along the direction of ligament - we don’t know is it the ligament itself calcified or the styloids are fractured (I have a history of trauma after which the symptoms started but may be not related). The right one is attach to ECA, so I guess surgeon is gonna have a lot of fun cutting it off….
@eggisnotaplant I’d lean more to calcified stylohyoid ligament rather than broken off styloid! Symptoms usually develop after head/neck trauma so that seems typical to me. Won’t know for sure until surgeon gets in there though
Stylohyoid ligaments are well-clear of your IJVs (i.e., they are not causing any direct compression of your IJVs). IJVs are pretty pancaked against C1 though on both sides. If you have intracranial hypertension symptoms I think a C1 shave could help. You do have collaterals formed on the back of your neck, which is often suggestive of IJV compression. Some radiology studies show that many people have collaterals and no intracranial hypertension symptoms, but if you do have these symptoms I’m not sure what else would be causing them besides the C1-IJV compression. Vagus nerves may be compressed between your IJVs and C1, which could cause dysautonomia symptoms. But so too could other things (e.g., CCI being one). I forgot to label it, but your right posterior digastric seems to add to some of the IJV compression on your right side - at the level of C1 and just below it.
BOTH calcified stylohyoid ligaments are in direct contact with your ECAs.
I think the mass you see may be a lymph node. I say this because there is the same mass on the other side that comes in and out of view just a couple slices further down. If it is a lymph node, I’m not sure if it’s within normal limits or not in terms of it’s size. It also may not be a lymph node, just my best guess.
Thanks again to @TML for labelling your imaging!
I’ve only seen one other member have the styloid/ calcified ligament fuse into the carotid artery like that before, I never heard the outcome after surgery though… I think you would certainly want a very experienced surgeon if you do want to get them removed.
If I’m wrong, hopefully @Isaiah_40_31 can correct me, as she remembers all the doctors better than I do! But Dr Costantino I think would be a good bet to get an online consultation with as he does do C1 shaves as well as remove some of the digastric muscle if that’s causing compression, I’m not sure that Dr Cognetti does that.
Mr Axon in the UK does do online consultations, he does a C1 shave but as he’s a skull based surgeon I don’t know how he would feel about removing calcified ligaments further down…he has worked with a very experienced vascular surgeon called Mr Higgins, so if they worked as a team that would be good, I can’t remember though if somebody said he’s taken some time off…
If you want a good opinion on anything else to look into on your scans, Kjetil Larsen at MSK Neurology has reviewed imaging & done online consultations for members, he’s spotted thing that other radiologists have missed, but obviously you’d still have to find a surgeon…
Members have found Dr Osborne very helpful, but he doesn’t do C1 shaves, so might not be the best doctor to pay for a consultation with.
Hope this is helpful!
@Jules I wouldn’t say they are fused (i.e., the stylohyoid ligaments ans ECAs) - I think the stylohyoid ligaments are just pressed against or resting against the ECAs. I’m seeing this a lot lately!
When you construct 3D models, it makes it look like the styloids and ECAs are fused together, but I think that’s just a blending issue with the program
Thanks, I’ve always found looking at the 3D images easier to see compression, but you’re teaching us how valuable to axial views are! It’s really interesting to see the differences…
@TML thank you so much for your review! Yup, I also thought IJV are pancaked but not obstructed…
I do have high ICP symptoms but only one side! To be precise, the right side is 20 times worse han the left one. This is weird! So, here is my big question that pancaked IJVs can cause this predominance one side - as for me, the picture is quite symmetrical? So, it should be smth else involved…
About the mass - seems I need a neurosurgeon for that. I’m also thinking about a lymph node but it looks quite big on the MRI. There is also a chance that tonsillectomy affected this area - I got root of the tongue and hypoglossal nerve injured after that, perhaps could also left a scar.
@eggisnotaplant the difference between left vs right side ICP symptoms can be common. It’s tricky to figure out why there is a difference when compression seems equal on both sides. Could be the difference in collateral veins on each side, or if the diameter of the IJV on one side is even slightly smaller than the other side. Sometimes people feel relief on the opposite side of their styloidectomy too which can be odd but it happens.
Had a consultation with Dr Osborne yesterday and looks like an unexpected plot twist just happened.
First, he said he had never seen a patient with such partial calcification as I do (we had fun for a while rotating the CT scan to see them properly). And like he cannot give me any guarantee that it related to my symptoms somehow. And at the same time he had never had patients with Eagle and such severe symptoms and… difficulties with speech.
And the part with speech difficulties was weird bc he could barely understand me what I’m saying, and that actually wasn’t the first time with me happening but last week it went to a new level. And that’s bc I cannot pronounce sounds properly in any language, English is even harder than slavic languages bcs of consonants - I can’t breath when I talk and my back of tongue seems not working at all and I cannot lift it up. So every two words my throat is getting blocked, and i need to pause all the time to unblock it again and take some breath. My brain shutting down when I’m talking bc it’s hard to think simultaneously with this breathing issues. So, I had to switch into texting sometimes, and also explained this to him and but he it is not what he saw in his patients like and unfortunately have no ideas while of course can perform the surgery but no guarantees. And that’s it.
So, looks like it is either veeery untipically or likely to be the main cause of my symptoms.
But like an hour later, I scrolled tiktok a bit and found this amazing video TikTok - Make Your Day explaining there is such a thing as posterior tongue tie that makes back of the tongue to be attach to the bottom of the mouth??!!! Like, seriously? The funniest part is that I noticed already a long time a go, that if I apply some force to lift my tongue up then my symptoms relieve significantly - tension in my jaw, TMJs, near around carotid and pain in the ear decrease, my head feels less heavy bit it is really hard hard for me to so, and I can do it only with the front part of the tongue and my hypoglossal nerve hurts after a while severely (that pain appeared after tonsillectomy 2 years ago and I was told it is nothing and will go away but it didn’t). Doesn’t explain all my symptoms from that point but a promising thing for a more significant pain relief?
What do you think?
I feel a little bit weird about this, I thinking about making an appointment with some doctor who specialize in this particular stuff.
Yep, that actually was the question bc surgery would take a year of my resources and if it won’t solve the issues (at least partially) I’ll lose bc there is not so much of me left.
I suppose with tongue-tie calcifications might spice up things and may be there is smth else - I still don’t get how these stuff along could produce predominantly one sided pressure from the inside and dysautonomia intensified with neck rotation and my jaw opening. Don’t know what kind of tests should be done for that.
@eggisnotaplant - The TikTok video is very interesting & could apply in your case. It may be that your symptoms have become worse for the reason you said (I liked the way you put it) - “I suppose with tongue-tie calcifications might spice up things..” I think your vagus nerve is also playing a role which you’ve speculated. It does make sense to look a bit further to figure out if you have a secondary problem like a posterior tongue tie that’s also causing problems for you.
Those one sided symptoms are most likely due to the partial calcifications of your stylohyoid ligament. Even a small section of calcified ligament can hinder the movement of the hyoid bone as the hyoid also helps w/ speech, breathing, swallowing, etc., Even a partially disabled hyoid can cause problems “upstream” as nerves & muscles compensate for it’s inability to move normally.
If you can find a doctor who can assess you for the posterior tongue tie to see if that’s part of your problem that would be ideal. An ENT, oral surgeon or plastic surgeon would be the types of doctors to consult with about the tongue tie.
I hope you’re able to get some solid answers about what’s going on with you soon so you can take the next step toward starting to recover.
@Isaiah_40_31 yup, vagus should be involved somehow here - my automomic nervous system testing shows parasympathetic system is severely underactive, and sympathetic one hyperactive, and there is also baroreflex dysfunction:
I think your vagus nerve is also playing a role which you’ve speculated.
I was also thinking about assessment of tongue and muscles around my jaw in general Looks like it is necessary if I obviously have a one big spasm in my jaw and around it, and there is high chance for some decompression to be performed. Gonna try with oral surgeon, even have one in mind.
Really hope to get answers soon - it’s gonna be hard.
Well, I was exploring how smth can simultaneously trigger pain in my jaw, my shoulder and along my back and give dysautonomia symptoms and resolve also simultaneously…. And learned that besides the area around styloids, there is also an option for accessory and vagus nerves - my main suspects - to be compressed in jugular fossa by sigmoid sinus?
This overlaps with vES pretty much but actually much better overlaps with my worst symptoms? By worst I mean this dysatonomia correlated with dull pain in my arm, jaw and ear, and severe pressure from inside on my head (mostly in my occipital area on one side) and extremely painful scalp to touch (also on one side of the head). And the pain in my ear, dull pain in occipital area, heaviness on one side developed right after a head injury a loooong ago and were the main symptoms for many years with gradual progression. Until a year ago, when it worsened in couple of days dramatically.
Looks like it is necessary if I obviously have a one big spasm in my jaw and around it, and there is high chance for some decompression to be performed. Gonna try with oral surgeon, even have one in mind.
By worst I mean this dysatonomia correlated with dull pain in my arm, jaw and ear, and severe pressure from inside on my head (mostly in my occipital area on one side) and extremely painful scalp to touch (also on one side of the head). And the pain in my ear, dull pain in occipital area, heaviness on one side developed right after a head injury a loooong ago and were the main symptoms for many years with gradual progression. Until a year ago, when it worsened in couple of days dramatically.