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hey, I tried with both and it didn’t work. It turned out that my trust level didn’t get elevated even after I’d posted so that’s why I couldn’t message anyone. Thanks though.
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Hi, thanks so much for sharing all of this information. I’m just wondering what the clicking sounds like. I’ve always had a kind of strange sound when I swallow, it’s loud enough for others to hear when I’m eating or drinking but it’s been since I was a kid so just thought that was me. I would describe it as a faint clicking with a bit of a liquid-moving sound combined. Sorry that probably sounds weird! I’ve only had uni-lateral styloidectomy to date (6 months op) but have not seen any changes to a lot of the non-specific symptoms to date. Trying to keep all options open at stage but at the same time, so low on energy with my health journey post my first op. I feel like I’m back at square one and it’s deflating. I’m sure more can relate with ES.
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@BraveKat - I’m so, so sorry to hear you haven’t seen much, if any, improvement in your symptoms since your surgery. I can’t remember if you had bilateral styloid elongation, but if so, it might be worthwhile considering a second surgery. I know your recovery from the first one was pretty traumatic, & you had a lot of ups & downs & did everything you could to have a good end result. We’ve had a few members where it took closer to a year to realize gains from the surgery so I’m still holding out hope for your improvement.
We have also had members, including me, who didn’t get much symptoms relief until the second styloid was shortened, however, that was because the remaining styloid was clearly symptomatic. If your other styloid isn’t long, thick, curved, pointed, or in some other state where it could be causing problems/symptoms then it’s likely not the reason you still don’t feel great; however, if you have symptoms on that side, it’s worth considering another surgery. 
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hey there, I think any normal person taking kind of a really big gulp, you would hear a faint sound and you would hear liquid moving. There’s also a sound that I can make which is kind of like a snore where I think what’s happening is my soft palate is moving and that also has kind of a similar sound to what you describe.
I feel what you would be describing is horrible pain with swallowing, feeling like you’re swallowing shards of broken glass or sharp bone, feeling like your hyoid is scraping the inside of your neck and your throat and snapping over vasculature. For me, I would say the sound was more of a snap that happened on both sides of my hyoid and in multiple locations (because I had a lot of different calcifications and the you know, bone, scraping and snapping sound corresponded to where the calcifications were). You know it’s weird cause I eventually figured it out by searching for “my hyoid makes a snapping sound” or something, and that led me to this forum, but you know really the main symptom was just horrible pain with swallowing you know and having stroke like symptoms when I would swallow or turn my head.
Now, maybe you have all of those since you got worked up for Eagles and you did have a styloidectomy, so maybe that just goes without saying.
As someone who had/has kind of all of the potentially intersecting issues in this area of your body maybe I can help you differentiate symptoms.
- I had clicking hyoid and had the surgery with full resolution of those symptoms
- Still have CCI/AAI/cervical instability (whole neck), made a lot of progress with PICLs but still symptomatic
- Still have mild untreated vascular ES (my IJVs are still slightly compressed bilat between my atlas and calcifications about 2cm down the SH ligament from the end of the styloids which are not elongated) and it’s gonna be up to Dr. Fargen if he removes the calcifications or if I just really need to focus on stabilizing my atlas (C1 shave not an option for me)
- have really bad and totally untreated TMJ issues bilaterally
- Also had tethered cord (successfully untethered w full resolution of symptoms)
- Have acquired Chiari zero but only on the right side somewhat treated but still symptomatic
- Have a tongue tie
And sorry for all the typos or the way that this is written because I’m using speech to text on my phone. 
For me the clicking hyoid issues were felt in the front sides of my neck, kind of like if you find the corners of your eyes and then go down from there until you reach your upper neck in the front. I mean, it is right where the hyoid is. The throat symptoms were very pronounced in the main thing was like swallowing or anything that moved the hyoid — talking, singing, etc. I would have scary symptoms when I turned my head or laid on my side and stuff like that, but they weren’t the same as I think what people are talking about with the jugular vein symptoms with ES. They were carotid symptoms and vagus nerve symptoms. So carotid, sinus, syncope, basically fainting or staggering, almost fainting, you know, just an abrupt vasovagal response. And then syncopal seizures, which I could elicit by laying on my left side. These were seizures kind of similar to focal aware seizures. Fully conscious. Didn’t have voluntary control. Time seemed to pass very slowly. The seizure itself was like these rapid small fasciculations throughout my whole body, but mainly my head neck, arms, and legs. Could go on for several hours before it would stop but at least 20 minutes. So needless to say all of this is just totally gone after the hyoid bone surgery. I do feel like my IGV compression is not as bad after the higher bone surgery, but I think that’s a bit peculiar to me because I had been tethered. My hyoid was posteriorly malpositioned, and the SH ligament was calcifying, restricting it into this very posterior placement where when I was hunched over with a tether, it was kind of supporting my upper neck like someone laying their head in the stocks. And because of this, you know my head, my occiput was translated forward and kind of held in that position by the calcifying SH ligament and my powers ratio was almost 1.0 but after the hyoid surgery is 0.68. So by cutting this ligament as part of the hyoid surgery, my occiput has been able to translate backwards until it’s directly over my neck and shoulders instead of being stuck in forward head posture, and this has reduced a lot of the compression on the IJVs. But I feel that’s kind of peculiar to my case because things grew in such a weird way because of my congenital tether.
So if your symptoms were more coming from CCI and AAI, which is totally possible after a styloidectomy, I think you’d you know first of all be able to get imaging from an AO chiropractor or a NUCCA chiropractor you know showing C1-2 subluxation and malalignment. I would honestly start there. You can look up the CCI symptoms. The Centeno Schultz clinic has a CCI “word cloud” on their site and unfortunately because so many symptoms are possible probably no matter which of these issues you had your symptoms would be on there, but I think you know you don’t want to develop CCI if you don’t have it already and if you do you want to treat it so I think assessing if that’s what’s going on would be a place you should start. you know for me my biggest symptom is, I mean it’s literally just bobble head. The vertebrae are shifting. You know I wear a hard c collar in the car and wrap a scarf around my head and kind of hold it under my chin to stabilize my cranium … Things are just shifting. I have very “mechanical” neck instability, whereas other people deal with more neurological manifestations. I think if you feel like your head is shifting around or your upper neck is shifting around when you are a passenger in a vehicle and you don’t know when someone’s gonna turn or when someone’s gonna run over a bump, if that causes symptoms, it could just be an upper cervical instability situation.
For me, I feel the eagle symptoms and the Chiari symptoms are a little bit bound up. Like I feel blood and CSF kind of getting blocked near my ears or at the skull base, respectively. I will feel like things are blocked and then changing positions or getting my atlas realigned will feel things start to flow again pulsatile tinnitus, sharp ear pain really just feeling of like congestion below the ears and at the skull base that corresponds with mild neurological symptoms like dizziness, ear ringing, brain fog, that kind of thing. (I know that most people on this forum have much more severe eagle symptoms because they have huge styloids and things can get really bad, so not you know dismissing that or minimizing anyone’s situation, I’m just saying because I still have some mild compression and I’ve been treating other related issues, I feel like this is kind of the core of what a mild vascular eagle situation would look like, literally, an issue with outflow.) So one idea is you know if you had your styloids fully removed and you’re still having these symptoms, maybe you had Chiari. Sometimes people are given supine MRIs and it’s not clear that they have Chiari. You need an upright MRI to see how the brain literally hangs with gravity. And yeah, I mean is it possible the surgeon didn’t fully remove your styloids? Or that you have more calcifications slightly further down for me my steroids are normal length and are not contacting the IJVs but there’s this little section along the SH ligament about 2 cm down from the bottom of the styloids that is compressing them. So basically, if maybe looking at CCI would be step 1, just confirming that all the calcifications have been removed from around your IJVs and the IJVs are fully decompressed would be step 0.
you know TMJ issues can also cause a lot of pain in the ears. It would be more like the middle of the ear almost like where the tragus is, right where the TMJ joint is, but yeah, that could drive a lot of pain and tension through the lower part of the face jaw and then the front of the upper neck. You could look up exercises for releasing your pterygoid muscle essentially you know TMJ trigger points and basically see if myofascial release there alleviates your symptoms. because I still have a vascular eagle situation going on and I have a really bad TMJ situation going on, my distinct impression is that the eagle issues and pain are fairly deep, about an inch inside, and there’s pain from right where the calcification is compressing the IJVs and that’s kind of stabbing upwards into the bottom of the ear like the lobe of the ear or the lower back of the ear. And then you know fairly deep inside, an inch or two inside you know I feel and hear kind of a clogged blood type sensation. The TMJ pain feels much more superficial, and you know kind of correspondence where the bones and muscles are on just right under the surface of the face and the ear pain from that is more where the tragus is. You know I feel like if it’s more an eagle or cci situation you should have increased symptoms turning your head or flexing, extending. If it’s a TMJ situation doing more chewing than normal or chewing really difficult things would be what exacerbates it.
Tethered cord, you’d be having a lot of lower half symptoms (bladder issues for instance) but I did have a lot of pain at the skull base with tethered cord, so that’s the only reason I really bring that up. If the pain isn’t like in the front of your neck about an inch and a half below your earlobes (eagle) but rather it’s at the base of the skull only and it’s really intense, kind of a pulling, tensile pain, that’s what tethered cord felt like to me in the head and neck region.
You know I feel like Chiari and vascular eagle can go together but I feel like I can tell which is which. Chiari feels like CSF blockage at this skull base with neurological symptoms for me. For me it’s worse in flexion. So maybe if you’re still having some the same neurological symptoms that you had with eagle but maybe a different position actually illicits them then I think you know it would be worth getting an upright MRI.
tongue tie I think is actually a big part of my picture but I can’t get it released until I’m able to do basically TMJ pt and my jaw is too unstable to do that right now lol. so for me, pressing on the digastric muscles under the tongue like inside the mouth decreases the tension a little bit. Honestly, I don’t feel like this could be causing your issues in of itself because I feel like your complaints would be focused on the time you know under the tongue it’s very different than where your styloids and hyoid are, but maybe if it was really severe?
I know there are a few other kind of conditions in this area (isn’t there one for the omohyoid muscle specifically?) but that might also be worth looking into.
Lastly, do you have eds?
OK, I hope this helps. I’m happy to help you kind of brainstorm and maybe better pinpoint what’s going on and where it’s coming from. I’ve had to you know live with a lot of stuff lol until we figured out what thing was causing what symptoms and it’s been a really lousy process lol. So if I can help expedite anyone else’s journey, I’m happy to help
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WOW! That’s a lot of good information, @churchyardyew. Thank you for taking the time to share what you’ve been through & what has helped you! Hopefully there will be some information in there that helps @BraveKat find a reason or reasons for the symptoms she still has.
Our focus here is the styloids, but they aren’t the only things that can cause the symptoms people experience so eliminating them as a cause is often a start of symptoms eradication but sadly not the conclusion.
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Thanks for all that info! It does seem as if many of these conditions are linked, we’ve had members with them, whether something like TMJD, or tethered cord & obviously CCI makes the head position out of alignment & that causes the styloids to calcify because of increased tension we don’t know…
I’m glad that you’ve found the hyoid surgery helps, and hope that you can get some treatment for the jaw & tongue tie soon
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Thank you @Isaiah_40_31 - it’s just so hard to know what’s going on to be fair. Some days are much better than they use to be but I’m still very much in an up and down pattern. I recently had a big flare up but it turned out to be a virus which I think @Jules said can happen and a week later I’m feeling like I’m back to my normal recovering self.
I think it’s the flare ups that make me question what’s going on. They are very disruptive and bring me straight back to feeling like I’m pre-surgery.
I am also getting the same kind of pain on my non-symptomatic side off and on when I have the flare ups. It only lasts an hour or so at a time when I get that specific pain but it’s the same sort of pain that I get on the left, a zinging pain shoots from my neck across the top of my shoulder and down my arm. The strange thing is that I don’t appear to have an elongation on the non-symptomatic side but I do have a very compressed IJV (I don’t think the styloid is causing it though, just the C1 transverse process). Also, I have noticed since my surgery that as I’ve been working to get the nerves in my left face working properly again, that it’s very obvious that my right side (non-symptomatic) is actually the side that looks more like it has Bell’s palsy. It’s subtle but obvious to me.
And I also have this new symptom where it feels like my thyroid/hyoid are being restricted and crack over other anatomy on the right side of my neck when I have my head in certain positions. Perhaps it’s being tethered by the right side (non-elongated).
My vagus symptoms are also still there everyday and I find it hard to believe that on my good days, that it’s the operated side that’s causing the vagus symptoms….
I don’t know. Perhaps I just need to wait another 6 months and see where I’m at before pursuing further investigations - I can definitively still feel localised pain at the surgical site in certain head/neck positions….
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@BraveKat - Most of our members who have bilateral IJV compression have found that getting both sides decompressed is necessary for optimal resolution of the symptoms that vascular compression causes. Whether or not the styloid is involved w/ the remaining IJV compression, you may need to get it decompressed.
Was there any comment made about your hyoid bone or thyroid cartilage as they appeared in your CT image(s)? It seems radiologists often only look for the things they’re asked to evaluate & ignore other things that may be amiss. The cracking sounds you’re noticing can be caused by calcified thyroid cartilage &/or elongation of the greater horn(s) of the hyoid bone. Perhaps you should look into Clicking Larynx or Clicking Hyoid Syndromes. We’re in a thread where Clicking Hyoid was addressed, & here’s a link to one about Clicking Larynx.
This is possible. I gather you have no stylohyoid ligament calcification on this side either?
The vagus nerve exists on both the left & right sides of our bodies, but more dominantly on the left so it could be the section on the right side that is continuing to cause problems; however, your suggestion of waiting 6 more months to see how things improve is a good one. Symptoms can take a year or more to fully recover & the recovery process can be frustrating as the months creep by w/o significant gains. The victory comes after all those months of patience when one realizes the symptoms are gone or mostly so. I will keep praying that your body is healing, just slowly, but that you’ll begin to notice more substantial & longer term improvements.
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I’m glad that you’re recovered from the virus, that’s one positive, gotta cling on to those… It does sound really frustrating for you to have your other side flaring up, I don’t know how easy it is to get a new CT done in NZ, but it might be worth trying to get that & seeing if anything does show up from the hyoid, or even if your other side has started to elongate or calcify since your last scan? And it’s worth considering to (depending how knowledgeable your radiologist was) that it’s not just the length of the styloid which can cause symptoms, but also the angle & thickness, so it might be that as you say the C1 process could be causing some compression, that they styloid this side is playing a part in nerve of IJV compression?
There are some posts about cold laser therapy for scar tissue, sorry if I’ve mentioned it before but something like that might be worth looking in to…Sending you a hug & praying for you
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Hi! Thank you so so much for your time in explaining all of this to me. It is so appreciated. In short, I don’t get a sharp pain in my hyoid when swallowing. So perhaps if something is going on, it’s more connected to the styloid than the hyoid. I’m at a lose in trying to work all of this out, so have reached out to a specialist in Australia to try to get some more answers. I can definitely feel a tightness/pain in the left upper and lower connections of the tongue and find using my tongue exacerbates symptoms. I’ve read this week that the tongue muscles connect onto the styloid process…so feels like this is either a case or symptom.
Again I really appreciate your help! Sorry it’s taken so long to respond. I so happy to hear you are coming to the end of a very lengthy health recovery journey!!
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Yes, pain using the tongue can be an ES symptom, when you get something stuck in your teeth & try to push it with your tongue used to set my neck off aching for ages…After surgery I was so chuffed when I could eat toffees & nuts again!
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Thank Jules! The more I recover from my op the more I’m beginning to think that I’m going to need a revision surgery. Something is still going on in there - but if I don’t have my calcified ligament anymore I guessing something else is causing the compression/dmaage. From what I’ve read, it doesn’t sound like many other es sufferers are in so much pain at the incision site/scar after surgery. That in itself seems strange to me.
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I completely agree & am sorry your surgeon hasn’t taken more interest in seeing this through to a better conclusion, @BraveKat. I hope you get further w/ the Australian specialist.
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I’m sorry to say you might be right 
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@BraveKat do you happen to have your CT imaging on hand? If you go to the axial view and go down to your hyoid bone I can see if your hyoid is digging into anything important! The axial view of the hyoid looks like this:
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Hi, sorry for the delay in replying. Thank you for your message and for taking the time to look it over. My images aren’t as clear as yours unfortunately. I’m at the ER now as not feeling well at all today. Hope I can get some of this sorted. Fingers crossed!
Oh no, I hope that they get you sorted & you feel better soon
Hopefully @TML or maybe @Rex can look at your images, I’m nor great at spotting things, but to me in the middle image it looks like your IJVs are both compressed, the right quite a bit…Don’t know about anything else!
Sending you hugs, let us know how you get on when you can
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Thank you @jules. Another blood test but unfortunately still not evidence of an infection despite symptoms that feel like one. Might try to push for a scan.
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@Bravecat - I agree w/ @Jules that both your IJVs look compressed but the right one looks worse. I think requesting another scan to look at your IJVs makes sense - especially if you can get it done in any positions that cause your symptoms to get worse.
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