ES in AR, guidance on imaging and surgical plans

[Arok]

Hi everyone!

New here. 35F Eagle patient from AR. Hoping to get some feedback on my imaging and surgical plans

Imaging -

1) Static CT with contrast for Eagle (laying down, styloids 3.6 and 3.8)

• Radiologist report said “no noted vascular compression”, surgeon said he thought it was close but not compressing. Curious for feedback because it looks compressed to me (but don’t know enough to say for sure)

• I have absolutely no doubt that I do have dynamic compression (mostly from static upright postures, repetitive movements, opening jaw to talk dentist etc, and sleeping when compensation muscles let go)

2) Also see orthodontist CBCT in 3D (upright, one styloid measured at 4.9ish)

• This also diagnosed upper airway resistance syndrome (110mm). Palate expansion recommended, but I think at least 60% of it is being driven by the stylohyoid tethering and want to address that first

Other info -

• Considering intraoral but I know it can be dangerous if you have vascular compression. Waiting for dna results to rule out vEDS (probably don’t have it, but I do at least have hEDS so want to be cautious). Am also aware that they can’t take as much out closer to the skull base with intraoral

• I do have upper cervical instability, severe intracranial pressure, concussed feeling, dysautonomia, balance issues, PEM, POTS-like symptoms, palsy-like symptoms, cervical dystonia and muscle spasticity, hemifacial spasms, left-side cervical stenosis, pressure behind right eye and sinus, severe right ear pain, gag reflex/foreign body sensation, pain behind jaw, tonsils, and lower temporal area, limited jaw opening (24mm), visual snow, tinnitus, May Thurner, TOS, cataplexy, ataxia, glossopharyngeal and occipital neuralgia, neurological symptoms, among many others

• I wouldn’t be surprised at all if I have C1 interaction going on. And tbh I can pretty much feel it. Pinches closer to my ear on the right, and closer to my C1 on the left. And a lot of clicking and popping in that area on the left side. However don’t think I’d want to do a C1 shave for my first surgery because - 1) I’d rather be as conservative as possible, and 2) I truly feel like some of the C1 interaction could be coming from functional compensations for the styloid pain and stylohyoid tethering, which keeps pulling the C1 out of place (I see an upper cervical chiropractor monthly to help adjust it temporarily as I was rotated 24.4 deg - plateaued around 13-16 deg). I just feel like I’m always “flinching” away from the right side of my body and face in order to protect from triggering worse nerve pain in my right ear and face, so that maybe that’s what’s pinching the C1 on the other side?

• Dr. Suen at UAMS Little Rock (only Eagle surgeon here in AR) said -

  • he can get about ~2cm of the styloid intraorally (he has done both approaches, but strongly recommends and prefers intraoral)

  • I do have partial stylohyoid calcification as well so he would release those and take some but leave the bottom part attached to the hyoid. So far I’ve seen this is not harmful to leave and could actually be beneficial to leave some support in there for EDS, but curious to hear others’ experience who’ve done this approach

  • He did acknowledge intraoral can be dangerous with some surgeons because they can’t visualize the blood vessels and nerves as well from that angle, but said he has done over 150 of these in the past 2 yrs and assured me he is very confident in how to do it well and wouldn’t put me at risk

My thought process

• • If I can get even 30% better from getting the styloids to of the parapharyngeal space and removing that skull/hyoid tether, and maybe at least partial blood vessel/nerve decompression, that would be such a win and absolutely worth it. I would be so much better off than I am today. And then could have the ability to pursue further surgery later, if needed

  • Dr. Suen seems very skilled and trustworthy, and I’ve heard accolades about from so many. I also saw he’s in thedoctor list here. Curious to know if any others have worked with Dr. Suen?

  • Although intraoral may not be ideal, it could be years before I get the surgery if I go out of state. Just traveling to Little Rock to meet Dr. Suen from where I live flared me to the point I couldn’t work for far too long, and that was 6 months ago. Am desperately trying to hang on to my career (I wfh from bed in a neck brace because laptop work is excruciating, and have no safety net if I falter any more) and only have so much time I can take off to figure all of this out. Physically unable to travel to consult out of state and I would have to do things piecemeal. And I’ve been living with this for decades I’m truly at the end of my rope and just need to get it done asap. Also, my body goes downhill so easily from procedures I’d be concerned that the external approach would disrupt so much more and leave me unable to work for longer than I can afford

  • I think I most likely have dynamic compression, not continuous. Wondering if it truly is only dynamic/positional compression, **then maybe intraoral would be less dangerous?**Like if they’re not stuck in a blood vessel then we just need to get them out of there right? Possibly very flawed logic I know, and would be so grateful for your input!

Will spare y’all of my pages of symptoms, back story, and other diagnoses but please let me know if you have any questions!

_____________________________________________________________________________________

Video of CBCT imaging

CBCT - Google Drive

Videos of CT with contrast - 3 views

Eagle Imaging - Google Drive

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CBCT Left side

• Left side looks pretty close to C1 to me, but maybe not touching

_____________________________________________________________________________________

CBCT Right side

• • has more stylohyoid “rocky” partial calcification further down

_____________________________________________________________________________________

CT with contrast

_____________________________________________________________________________________

Lower is most recent, upper is ~5 yrs old

____________________________________________________________________________________

Compression?

____________________________________________________________________________________

Upper cervical

below “touching” notation - left side is always spasming and clamped down, has one-sided stenosis correlates with the collapse in below imaging. feels like this could be a point of vascular compression

____________________________________________________________________________________

Posture

____________________________________________________________________________________

Upper airway resistance

[Arok]

Edits made to add more images and link videos of imaging!

[Isaiah_40_31]

Hi @Arok - Welcome to our forum! You’ve got SO MUCH going on from a health standpoint & for that I’m sorry! Have you had surgery for May Thurner or TOS yet or are those pending? The neuralgias you have may be related to your styloids/calcified stylohyoid ligaments & could reduce or go away completely once you have your styloids/s-h ligaments removed.

I’ve looked through your imaging & am not sure what some of it is showing, however, your styloids don’t look elongated, but you have a significant “ribbon-like” stylohyoid ligament calcification on the left side. Both styloids are pretty pointed at their tips & the right one is somewhat thick with smaller sections of stylohyoid ligament calcification below it. It appears you’ve already noticed all that.

I was able to take a picture from one of your videos that shows your left IJV, in particular, is being compressed predominantly by your C1 vertebra. You can see there’s a space on both sides between the styloid & IJV but not between the TP of C1 & the IJV.

The “ribbon-like” s-h ligament & is also likely contributing to the compression on the left, but it doesn’t appear to be the dominant problem. This also appears to be the case on the right side i.e. C1 is the dominant IJV compressing agent, but the sections of calcified s-h ligament could also be contributing.

In the image below you can see the larger role that the transverse process of C1 is playing in causing your IJV compression on the left. It doesn’t look like you provided any similar images of the right side.

Based on what I’ve seen in your imaging, it’s no wonder your left side is more symptomatic than the right side. You’ve noted a number of significant symptoms that we know to be related to IJV compression (severe intracranial pressure, concussed feeling, dysautonomia, balance issues, PEM, POTS-like symptoms, severe right ear pain, visual snow, & tinnitus), & these are unlikely to resolve unless your left IJV, & possibly right, is decompressed.

As your styloids appear normal length, removing 2 cm on each side will nearly take them to the skull base (a good thing), & removal of the calcified sections of your stylohyoid ligament will likely help reduce or alleviate some of the nerve symptoms you have. However, we strongly feel that intraoral surgery is not safe when a person has IJV compression. Though I understand your situation, I feel I need to give you this warning.

It’s obviously your decision whether to go ahead & have Dr. Suen do your surgery, especially if he is aware of your IJV compression & still feels he can do what he needs to safely, and you will possibly get some nerve symptoms resolution.

There are risks of permanent damage to vision, hearing & cognition with long-term untreated intracranial hypertension which results from IJV compression, so it would be wise for you to consider getting that taken care of as soon as you’re able to travel.

I hope this information is good food for thought.

[Arok]

First of all just cannot express enough gratitude

Had a feeling about this and although it’s really not what I wanted to hear I so appreciate your candor!

I have more “crushing” like symptoms on left, and more nervy symptoms on right. It started with nervy on right which is why I feel I’m “huddling” to the left which is causing the crushing. For example I hold my tongue to the left and if I relax it back to the right the excruciating right ear pain comes back

Was confused about styloids not being elongated. Does that mean it’s the angle of them that’s the problem? I thought anything over 2.5-3 was considered elongated. So then the styloids are normal but it’s the stylohyoid alone that’s calcified? How did you distinguish between the two?

Whyyy did my radiologist and Dr. Suen not interpret it as compression when it looks so obvious?

I would feel so much more confident in giving it a shot if he had said he saw compression. He just said it was “close” which confuses me and makes me question everything, but maybe he was only looking at the styloid rather than C1?

Do I need a dynamic MRV or venogram with pressure measurements to be sure?

Btw saw where you commented about vagus nerve and chest pain. Got a frenectomy in Dec and now I have more instability and that sharp pain that shoots down my right clavicle / sternum and along the bottom of my right tongue. Gotta be vagus or glossopharangeal

Starting to question if Dr Suen meant that he takes 2cm of the styloid, or just stylohyoid. Just saw a post where someone said he only took their stylohyoid and didn’t touch the styloid. Either way I think as far as the styloid he would only be able to go so far up through the mouth regardless of styloid length, which yeah isn’t great

Sorry for the dump of photos lol I had no idea what yall needed so I may have gone overboard out of caution. Also brevity is not my strength haha

I think from the sagittal view, some are left and some are right. I just took a bunch of screenshots as I scrolled through and lost track of which side was which. I think in the video it starts from left to right. This is the full video from left to right - https://drive.google.com/file/d/1cVvc0tZpiQiKw-JJ0-WgKTTIQ4RWwym3/view?usp=share_link

All this time I was thinking the IJV in that image was actually the super thick base of the styloid lol thanks for that clarity!!

Can you share more detail on the precise risks of intraoral with IJV compression from C1? Have you seen bad outcomes? If the styloid isn’t what’s compressing the IJV in my case, does that help make it less risky? Would getting the styloid out of the way help the IJV be at an angle where it’s less compressed by the C1? If it is the C1 mostly, why is that the case? Would it be my CCI / rotation / something else? Is C1 shave the only solution? On a scale of 1-10 how severe does my compression look relative to others you’ve seen?

I know I may be grasping at straws here, but will need to reason through a lot to convince myself to go another route haha

Any thoughts on ruling out carotid compression?

Any ideas on best sleeping position to minimize cranial pressure buildup?

Got some more questions but need to try to sleep. I’ll be back soon! Thank you sooo much

[Jules]

I think @Isaiah_40_31 has covered plenty, I can’t label images I’m afraid & aren’t so good at reading them, but in this image it looks like there’s compression at the hyoid bone too? But I can’t see the hyoid in any imaging so can’t say if the horns are elongated, nor see if there’s calcifications of the ligaments that end…

There looks to be gaps between your styloids & then sections of calcification, so this is the stylo-hyoid ligament which is calcified. If the styloid is elongated then you wouldn’t see gaps…
I don’t know why your doctor couldn’t see the IJV compression, but maybe as it seems to be from the C1 process perhaps that’s why he didn’t mention this? Sometimes removing the styloid is enough to give space for the IJVs to open up, but if the C1 is causing most of the compression then it may well not be enough.
All calcifications of the ligament would really need to be removed to give you the best chance of symptom relief, especially nerve pain.
I think having intra-oral surgery carries more risks from not being able to see the blood vessels, although obviously Dr Suen feels he has enough experience to avoid this, but particularly if there is IJV compression from the styloids, they do need to be removed as close to skull base as possible to remove that compression- this is the main problem with intraoral surgery & IJV compression. The vascular ES doctors usually check that there aren’t any compressions remaining on the IJV & that it’s flowing properly before they close up- there can be other blood vessels, muscles or nerves all adding to the compression which might need to be tackled too. With intra-oral surgery this isn’t possible. So if you did opt for this surgery, it might help with the nerve pain symptoms, but would be unlikely to help with the head pressure. The vagus nerve is in the carotid sheath with the IJV and the ICA, so if the IJV is compressed then it could well be the vagus nerve is too. But if the C1 is causing this compression then any vagus nerve symptoms may not be improved either? But it’s impossible to say for sure unfortunately…
It isn’t very helpful really to say whether your compression is more significant than others, as we see all the time here that the degree of compression doesn’t always correlate with the amount of compression. Some people have very bad symptoms, but not that bad compression, others have significant compression but their body is compensating. (The body does compensate sometimes with collateral veins, these are at the back of the head & swell with extra blood flow, but this can cause pain too.)
To rule out carotid compression a CTA would be needed, a dynamic CT venogram with pressure manometry would show how much compression there is on the IJVs, & a DMX would possibly show CCI…But presumably these would all involve travelling, more time & money, so unless you’re considering seeing one of the VES docs, is there a point? If this helps you make the decision that you might need someone more knowledgeable with VES, then maybe it is worth doing?
I’m sorry that we can’t give you definite answers- only you can decide how bad you’re feeling & if you want to take a chance on intraoral surgery & see if you have some improvement, or whether you can hang on , get more testing and look at travelling to one of the vascular ES docs to get a more thorough job done?

[Arok]

Ah thanks so much Jules! I am open to exploring going out of state, even if I haven’t yet figured out how. Also curious if any good VES docs yall may know would do telemed, because maybe they could order imaging that’s available here. Although I know if it isn’t done right and they don’t have the nuanced knowledge to position my head right here it’ll be pointless

Certainly not trying to judge my situation against patients as I know symptoms and dynamics can very a lot. My intent with that question was just to get a gauge on whether maybe improving my CCI post intraoral surgery with physical therapy, upper cervical work, etc. could be enough to decompress (for example, if the compression isn’t that bad maybe it’s a matter of positioning that I’d have more control over, even though yes my symptoms are quite bad)

But like unless my C1 bone is physically deformed/oversized, I do still have some skepticism in my gut about the necessity of a C1 shave (which could be coming purely from ignorance). Unless maybe it’s my styloids being angled wrong that’s pushing the IJV back into to my C1? Idk, I have a lot to learn. I know there are other muscles and ligaments that attach to the styloids too so if they’re truly not elongated I do question whether I’d want to remove them all the way to the skull base

I think you’re right Dr Suen was probably zeroed in on the styloids and not the C1. I did a search of his name on here and the two patients I found that had gone with him didn’t seem to be having good outcomes. Have sent them messages to see where they’re at now

I will talk to Dr Suen again and find out about whether he thinks he can get the full stylohyoid calcifications. And any other questions anyone thinks I should ask him! To your point I feel a lot going on down around my hyoid and he said he’d leave that end attached. But maybe just releasing the tethering would be enough to get my neck mechanics more balanced

Another fly in the ointment - got serious concerns about intraoral impact to existing locked jaw and CCI, both of which I don’t think Dr. Suen knows what I’d need there to navigate intraoral without making those things worse

The head pressure is probably my #1 most debilitating symptom unfortunately so yeah it’s a tough decision

[Isaiah_40_31]

@Arok

@Arok

I feel a lot going on down around my hyoid

Good call on @Jules part about the IJV looking compressed near the hyoid bone. Four eyes, or more, are definitely better than two! I just found a research article regarding IJV compression being caused by the hyoid bone: Dynamic Internal Jugular Vein Compression by Hypertrophic Hyoid Bone: Management and Outcomes - PubMed
That was interesting to me because more typically the hyoid causes irritation or compression to the common carotid, internal carotid &/or the external carotid. Compression that low down could also be resulting from a nerve, muscle, lymph node, scar tissue, or some other soft tissue local to that area. I’ve circled the area of IJV compression that’s near your hyoid bone & added a green arrow pointing to a white spot (maybe calcification of some sort if it’s not the hyoid bone) that may be contributing to the vascular compression in that area. If you can post a picture in the coronal plane that shows your hyoid bone from the front, that would be very helpful.

@Arok

maybe improving my CCI post intraoral surgery with physical therapy, upper cervical work, etc. could be enough to decompress (for example, if the compression isn’t that bad maybe it’s a matter of positioning that I’d have more control over, even though yes my symptoms are quite bad)

PT & upper cervical muscle strengthening have helped a few of our members who have CCI. We think this is an excellent approach. Those who’ve had the best success have done this post vES surgeries. I don’t know if the situation in your neck would change enough just by strengthening your supporting neck muscles to reduce or stop your IJV compression. Some of the vES doctors Rx a blood thinner for their vES patients to try for at least a month as that has helped a number of people to have a reduction in headaches & brain fog as they await their surgery dates. The blood thinner can take a month to begin resolving symptoms. Those most often mentioned here are Brilinta, Plavix & Xarelto (& a few others I don’t remember at the moment). Diamox is another Rx medication that has been helpful.

@Arok

Also curious if any good VES docs yall may know would do telemed, because maybe they could order imaging that’s available here.

I believe both Dr. Cognetti in Philadelphia, PA, & Dr. Costantino in White Plains, NY, will do telethealth initial consults. Dr. Cognetti is booking into late summer at this point but Dr. Costantino isn’t booking that far ahead. The difference is that Dr. Cognetti gives his cancer patients priority so ES patients have to wait to see him, however, he is one of the doctors we’ve had on our Doctors List for the longest. Both doctors are very experienced w/ vES surgeries & both operate together w/ a neurosurgeon in the event shaving C1 is necessary. These 2 doctors would not require more information than you already have in your current imaging to offer you consult appointments. If they want something further to be done, they would request that during your consult.

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves
David M Cognetti MD | Jefferson Health Does do online or phone consults.

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults we believe.

@Arok

…unless my C1 bone is physically deformed/oversized, I do still have some skepticism in my gut about the necessity of a C1 shave (which could be coming purely from ignorance)… Unless maybe it’s my styloids being angled wrong that’s pushing the IJV back into to my C1? … I know there are other muscles and ligaments that attach to the styloids too so if they’re truly not elongated I do question whether I’d want to remove them all the way to the skull base

That would be a discussion to have with a vES surgeon should you decide to go that route, however, I understand your concerns w/ the other things you have going on i.e. hEDS & potential CCI, that keeping as much intact in your neck as possible is a good goal. From what I can see, your styloids aren’t long enough to be causing any problems w/ your IJVs. Only your calcified stylohyoid ligaments are, so they are what’s at issue, not your styloids.

Because your styloids are so pointed at their tips, there’s a good chance that even though they aren’t long, they are irritating local nerves which could be contributing to your symptoms. At least getting the points smoothed off might be helpful, even if you don’t elect for a styloidectomy, but I do suspect getting your styloid shortened could be helpful. Those of us who’ve had our styloids cut back close to skull base haven’t missed the detached ligaments & muscles associated w/ the styloids. Those mostly play a minor role in swallowing.

@Arok

I will talk to Dr Suen again and find out about whether he thinks he can get the full stylohyoid calcifications.

That’s a good plan.

@Arok

got serious concerns about intraoral impact to existing locked jaw and CCI, both of which I don’t think Dr. Suen knows what I’d need there to navigate intraoral without making those things worse

These are very valid concerns especially the problem with your jaw as your mouth will be clamped wide open for the duration of an intraoral surgery. I can see that could cause some serious repercussions with your already compromised jaw joints.

[Arok]

@Isaiah_40_31 its funny you say all of that about hyoid-level calcification

At my consult I mentioned ongoing pain and lump in submandibular area. Dr Suen said what I pointed out (in the below xray) is just my hyoid itself, but other Dr (my primary care) did say it looked like calcification.

That said, I had an ultrasound in that area and they didn’t report any calcification, only a cyst on the opposite submandibular gland

But yeah my right submandibular gland has given me a lot of issues for a long time and is enlarged. It can be palpated - which is tender and triggers more nerve pain to my right ear - and feels like a rock in there (to me and others). It is also visible on imaging - radiologist called the right gland itself out as being “asymmetrically enlarged” on an MRI after I reported having pain and a “lump” in that area

Dr. Suen said it could be my right stylohyoid poking into that area and pushing the gland down - which is pretty much what it feels like - but that was prior to his own CT imaging and I haven’t mentioned it again since

Was unable to pinpoint the right level you mentioned, but was trying from my phone. Will do from laptop tomorrow where it’ll be easier to control

You’re talking about one from this angle, right?

Screen Recording 2025-12-30 at 6.01.17 PM (1).mov

I will also say, my hyoid / C3 have self-adjusted randomly a couple times since I started upper cervical care about 18 months ago and held pretty well. I do think the stylohyoids are likely what’s keeping my upper cervical progress at a plateau so maybe that could continue to improve itself more post surgery. That area def used to be wayy more collapsed so it seems plausible that actual calcification could have formed, but then again the ultrasound didn’t find any

Cant wait to read that article thank you very much for sharing that and everything else! Running out of steam but I will be back on the rest soon!

[Isaiah_40_31]

I took a pic of an image that showed up in the video you just sent that I think explains the lower compression in your IJV though I don’t know what the thing I circled in green is. Additionally, there’s a red arrow pointing to what looks like a small blood vessel which is also crossing the compressed area. We’ve seen incidents of vascular compression being caused by other vascular tissues so that could be a contributor as well as the enlargement I circled which is possibly a submandibular gland. However, since you said your enlarged one was on the right & this is on the left, it could be something else. Whatever it is, it doesn’t look calcified in the imaging.

Without annotation:

With annotation - You can see the IJV disappears in the area where the circle is & above it :

[Arok]

Fascinating! The only things I know for sure about that area on the left side -

1. the submandibular gland has a cyst

2. I do have what feels like stylohyoid tethering at the left hyoid

3. it’s the side my jaw and C1 are the most vertically collapsed (marked pink in first post), with multilevel stenosis down that side as well as left cervical dystonia

4. it’s where I dump a lot of my weight to keep it off the right side (distributing cervical weight evenly triggers lancinating right ear pain)

5. could be my muscle spasm itself causing some kind of bulging? That spot is definitely pretty central to my spasm pattern

6. could be thyroid related! I do have hashimotos with nodules in both lobes and a goiter on the left side that’s in the same vicinity I think?

Putting my $ on left thyroid lobe haha but curious what you think. Or some kind of bulging muscle issue? I think thyroid calcification and submandibular cyst are outcomes, and the others are maybe the upstream drivers?

It truly does feel like this exact spot is where my cervical dystonia spasm originates

Ultrasound

FINDINGS: The right thyroid gland measures 5.4 x 2.1 x 2.2cm. The right thyroid gland is heterogenous in appearance. The right kidney inferior pole demonstrates a 1.8 x 1.3 x 1.6 cm isoechoic TR3 nodule with small cystic area. There is a right mid inferior 1.4 x 1 x 1.4 cm isoechoic TR3 nodule. The isthmus measures 0.43 cm. The left thyroid gland measures 5.1 x 1.4 x 1.6cm. The left thyroid gland is heterogenous in appearance. There is a left mid 5 x 4 mm calcification. The submandibular glands were included on the study. There is a small cyst in the left submandibular gland.

Alsoo I think whatever this restricted area is lines up pretty perfectly with my airway pinch point (red)!

Learning so much (even to apply from a posture / proprioceptive / somatic standpoint). Thank you!!

[Arok]

@Isaiah_40_31 just found this note in my MRI imaging report, I wonder if it’s referring to the same one you pointed out!

“A small normally. Blood vessel is noted coursing in the subcutaneous soft tissues, symmetric to the contralateral side.”

(Contralateral in this context means the left side, opposite the side that I had told them was bothering me)

I also often get a weird phlegmy sensation in this exact location, a few hours waking up. Always felt like a big glob of fluid draining, but not in my throat

[Jules]

That’s interesting, we’ve had members who’ve had thyroid cysts , does seem to be quite common on here… could be that or a muscle affecting the IJV lower. The SCM muscle is one that quite a few members have noticed is enlarged & contributing, not sure if you can feel that:

The digastric and omahyoid muscles are also ones which contribute to symptoms too…
Or it could be the blood vessel which was noted.
Several of us have had issues with salivary glands too, I had a stone which started the imaging which led to my ES being diagnosed, & @Isaiah_40_31 had a salivary gland issue too!

[Arok]

@Jules I will check this with one of the doctors @Isaiah_40_31 shared, but if you think it’s plausible that it’s muscle, then that’s almost certainly it

It’s truly exactly where my dystonia spasm originates. And my hope has been that it is compensation for the styloids and will resolve itself post surgery. Ever since I was very young that spasm has tilted my head, warped my expressions, etc.

And funny you mentioned the omohyoid - below is my grand theory of how I ~think~ my C1 instability is being perpetuated - by being pulled out of place from muscle compensation for the stylohyoid tethering/shortening

Maybe it’s SCM on left and omohyoid on right!

For any who don’t know -

• Blue = omohyoid (hyoid to scapula)
• Pink = levator scapula (scapula to C1)
• Purple = stylohyoid

But yeah smiling, talking, facial expressions, etc. all flare this spasm and bring on neurological symptoms - which would make total sense if it’s compressing blood vessels!!

(I feel it more on my left side, but tends to be more visible on the right - probably because the left spasm is pushing everything over to the right)

Btw when I’ve shown this spasm pattern to AR doctors they don’t see it / think I’m being body dysmorphic or over analyzing - sooo grateful and excited to finally be able to talk through with someone who sees these things!

[Isaiah_40_31]

@Arok - You’ve made lots of good speculations, & w/ @Jules added info about possible muscular involvement in your IJV compression, I think you could have a very interesting discussion w/ whichever doctor(s) you end up consulting. Even with the information you’ve gained from here, & conclusions you’ve drawn yourself, you shouldn’t expect to have your ideas embraced 100% by someone in the medical field, eve if that doctor is very vES savvy. Any doctor you consult will have their own opinions & will draw their own conclusions. I think being able to combine what you know/suspect with what you learn from a vES doctor will help give you a good overall explanation about the causes of your IJV compression & what the potential solution(s) will be.

BTW, my head naturally tilts to the left but not to the extreme yours does. I found out a couple of years ago that I have mild scoliosis so maybe that’s why. It wasn’t diagnosed until I was older so I suspect it’s developed over the years maybe as the result of a couple cycling accidents w/ head injuries which, of course, messed w/ my neck, too. Our bodies are constantly compensating to keep us functional, & those compensations can cause some painful & interesting physical changes inside where we can’t see them, but they can become visible externally at times.

[Jules]

It’s quite incredible that you can have head tilt or a very enlarged muscle one side, and doctors don’t think that’s significant!