Hi @Jules @Isaiah_40_31 hope you are well. I have now had it confirmed that i have elongated calcified styloids. I am waiting to be refered to a neurologist for an opinion. I wanted to ask without sounding like a broken record what the most common cranial nerves that are involved. Am i right in thinking the vagas nerve, Spinal accessory nerve, facial nerve, glossopharyngeal are common nerves affected? Also i am sure ive asked this but the Trigeminal nerve is Not involved? I am so grateful for your help. Many thanks
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We are happy for you to sound like a broken record, @JoJomoo! It’s best to know the facts & not be guessing at them.
The cranial nerves most often affected by elongated styloids/calcified s-h ligaments are
Vagus
Trigeminal
Facial
Glossopharyngeal
Spinal Accessory
There seems to be a slightly lower incidence of irritation of the
Hypoglossal
Vestibulocochlear
@Jules goes over each nerve & the symptoms they can cause more in depth in this post:
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@Isaiah_40_31 has answered your question, just wanted to add I’m glad that you’ve got it confirmed that your styloids are elongated, and hope that the wait isn’t too long for your Neuro appointment 
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I cried when i got ot in writing. Still feel nervous at when will ghis ever get sorted. Im in so much pain and have such odd symptoms. My very first symptom was numb tongue and not feeling my swallow which was terrifyin. Now my SCM and trapezius scapula and shoulders are either so weak so painful. I see it says the spinal accessory nerve is affected which im thinking answers mh symptoms but ive not come across anyone with SAN issues to talk to. Vagas nerve just seems to be evil in what symptoms it can give. This is miserable. My facial nerve is very much affected. Im grateful to you
and @Isaiah_40_31 what an amazing group this is. Thank you
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@JoJomoo - The tongue & throat symptoms are most likely coming from your glossopharyngeal nerve (GPN), & as you noted, your neck/shoulder (all aspects of your shoulder) pain from the spinal accessory nerve.
You can Google the cranial nerves one by one & click on the “images” link to see where in your head, neck & body those nerves are. Having that info is also helpful. Also, there is a series of YouTube videos called Two Minute Neuroscience w/ a short video for each of the cranial nerves that is very informative. Here’s a link to the GPN video:
We’re very happy to be here to help you. I do hope you can get your appt. soon!
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If anyone is reading this who has/had painful shoulders/neck/trapezius/scapula please lets share stories. Im feeling a little alone with this particular symptom.
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Hi @JoJomoo I felt like my neck and trap area was actually where I first started having symptoms. I actually went to an Ortho first and got an MRI of my neck to make sure there was nothing wrong. Suprise Suprise everything came back normal with no clues as to why I was feeling pain and tightness. I will say the pain felt deep in my neck and like a dull ache. Sometimes it feels suck like I need to snap it. My neck symptoms are harder to explain as they are not as obvious as say my eye twitching,globus sensation,feeling pain in my tongue and when I swallow, Jaw pain, and headaches, to name a few of my other most bothersome symptoms.
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Thank you so much @Donoel for replying. It makes you feel less alone. Where are you onYour journey? Have you had surgery yet? May I ask of you had any shoulder pain/weakness? Intetesting to read you had eye twitches…i have odd sensations around my eyes…like twotching and muscles feeling pulled/sucked/stuck and also extremely light sensative…my eyes areca horrid symptom. My hlobus sensation is horrid also. So grateful for help.
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I just used the search function to look for shoulder pain, lots of discussions have come up, some are a bit older and members might not be on here now, but at least they’ll hopefully make you feel less alone:
Shoulder pain and weakness after surgery - General - Living with Eagle Rotated C1 and shoulder pain - General - Living with Eagle Shoulder and neck pain - General - Living with Eagle
Back shoulder blade and neck pain near the collar bone - General - Living with Eagle
1 week after surgery (pictures) - General - Living with Eagle
Shoulder/Arm pain! - General / Eagle Syndrome Stories - Living with Eagle
3 years with possible ES. Tried prolo and upper cervical care but not relief , it is time for a surgery - General - Living with Eagle
General ES diagnosis advice - General - Living with Eagle
Hope this helps
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Thank you so much. I had a good look through. I feel a bit embarrassed with constantly asking questions but I do appreciate your time. I have some odd symptoms I wonder if anyone can relate to…
1 i feel like im really short…like I feel closer to the ground thsn I am…
2 my chest/tummy area feels like muscle spams/cramps and tight…like a belt like squeeze
3 i feel like im gagging sometimes and a choked sensation
Can anyone relate or understand why?
Many thanks @Jules & @Isaiah_40_31
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I recall @Jules had a similar feeling spacially like the ground was closer than it really was.
Your chest & tummy sensations could be from the vagus nerve since you have other vagus symptoms. I get chest pain over my heart once in awhile. I used to think I was having a heart attack, but I’m pretty convinced it’s my vagus nerve acting up. I have seen a cardiologist, had an echocardiogram & stress test & was told me heart is healthy thus I’ve drawn my own conclusions.
The gagging/choking sensations are common w/ ES. I think they’re glossopharyngeal nerve symptoms. I had problems w/ choking on my food when I ate before I had surgery but that problem has gone away since I had my styloids removed.
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My symptoms started as vascular 2 years ago. Now that those have died down a good bit, I have started to get weak arm or pain in my trap/neck. It’s SUCH an annoying symptom and can feel like dead arm. My arm and hand are also cold to the touch!
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Yes, as @Isaiah_40_31 says, I had the really weird sensation of being closer to the ground, it is a known symptom of Intracranial Hypertension- increased pressure inside your head, which can be caused from Vascular ES if the jugular veins are compressed. I’ve never had that symptom since my first surgery which released the compression on my jugular vein.
I’ve not had the other symptoms…please don’t worry about asking lots of questions, we’re here to help you if we can
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@Monica - Your arm/hand symptoms seem more like they could be related to TOS than vascular compression caused by ES. Have you been evaluated for TOS by a doctor?
@Isaiah_40_31
Possibly, but since they only started when I also started to get syncope symptoms too after farting around massaging the area where the styloid is. It’s also only on my left side, which is the side my elongated styloid is on.
I’ll look into it more if it doesn’t resolve with surgery but I am pretty sure it will. 
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@Monica - Ah…good point. I’m sorry but I’ve forgotten, are you scheduled for surgery & if so, who is your surgeon?
I have not been scheduled for surgery yet. I’m waiting for open enrollment in November and then I’m going to start fighting with insurance haha!
My surgeon is Dr. Osborne and contrary to popular belief, he does take insurance, it’s just whatever is leftover is out of pocket and you have to pay before surgery. And he’s a good advocate for you, will make calls, write letters etc.
Does anyone know who got their surgery covered, what companies seem to be more understanding and less tough to argue your case with?
Regardless, my surgery will either be in January or March. Dr. Osborne is booked two months out, which is far better than Hepworth!
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@Monica i was also investigated for Thoracic outlet syndrome…my mri showed no compression. With the help of thos site im thinking my symptom’s are the spinal accessory nerve…absolutely horrible symptom. Such nervy pain in my SCM,trapezius and shoulders…my arm just feels so heavy and i too get loss if sensation.
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I would say you’re probably right about that, with your spinal accessory nerve! Definitely super annoying to live with, especially if you work with your hands in any way. Thankfully mine seems to come and go, some days nothing, other days it aches and aches for days and I can’t get to the “spot” if you know what I mean.
Once the styloid is removed, the compression should be taken off that nerve and allow it to heal
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Interesting about the insurance. We’ve repeatedly heard from members who’ve had surgery with Dr. Osborne that the insurances he takes are very limited & most members have had to pay the full $35K out of pocket which is a pretty penny for sure!
I had an Aetna PPO when I had my ES surgeries, & they covered them very well. I was only out a few hundred dollars between two surgeries. My surgeon billed my surgeries as craniectomies vs trying to bill for styloidectomy or Eagle Syndrome. There is/was (at least in 2014/15 when mine were done) no billing code for a styloidectomy or ES. Might be worthwhile checking w/ companies you’re considering during open enrollment to see who covers pre-existing conditions & would also pay at least part of a styloidectomy or craniectomy. In the “olden days” medical insurance companies used to require a 90 day waiting period before pre-existing conditions would be covered. I don’t know if that’s still the case w/ some companies.
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