Just wanted to say I am new and probably in the same boat as most of you. I seen around 10 doctors ranging from pcp, neurosurgeons, orthosurgeons, rheumatologist, NPs, pain specialists and my problem was missed for about 3 years now with symptom list growing all the time.
I am not 100 percent sure my problem is eagles syndrome as im missing a few symptoms and have some symptoms that might not fit but vagus nerve, access nerve, trigeminal nerve and hypoglossal nerve involvement sure would explain everything. Noy sure if its weak ligaments in neck causing forward spine or if its styloids coming from anterior side.
My styloids are around 3 to 3.5 centimeters on both sides and seem to have calcified in an odd direction.
My left side i dont have many symtpoms but my jugular vein (and possibly cranial nerves) appears to be compressed by the styloid and c1.
My right side is the side with majority of symptoms and the jugular vein and high probability of cranial nerves coming out of jugular foramen with it seem to be highly compressed to the point i thought i had a hypoplastic jugular on that side.
Symptoms:
constant mainly occipital region and right sided neck pain on postierior lateral side of neck but sometimes left also when i have a bad flare up, constant shoulder trapezius pain, does not radiate down arm and shoulder problems ruled out, no response to anti inflammatories, or opiates
Fluctuating tinnitus, can go from pretty much silent to damn annoying
bilateral jaw pain right and corner or jaw and like under side of bottom jaw line, tmj and bruxism ruled out
unexplained anxiety/depressed feeling with no history of, mind feels calm but body feels tense and racing, not much response to snri and benzos
severe fatigue during flare up
insomnia
occasional pressure headache
very frequent nausea and appetite changes
sudden gi issues where ill go from normal to watery diarrhea multiple times in a day witha
flare up with gi doctor stating my system is in “overdrive”
feet get cold during flare up
bilateral ear fullness sometimes with no response to antihistamines or nasal sprays, no infections
Relevant info:
worse when working out anterior neck muscles
worse when wake up on stomach with head turned
gabapentin/ medical marijuana/ valium/ high dose steroids/ adderal seems to be the only meds that helps any
cardio seems to help some but strengrh training doesnt
symptoms seem to improve and worsen when they want
ruled out any autoimmune causes
have had 3 neck mris, head ct with contrast
and neck ct with contrast
Symptoms i dont have:
I dont have the feeling of something stuck in throat and my styloids are not massive
My styloids dont show well on x rays
Styloids arent massive
I am scheduled to visit with prominent 2 head and neck surgeons/ent/oncologist in new orleans and another neurosurgeon now that i have ct scans. The mris ive had before started at c2 so i can see how doctors missed it
Hi & welcome to the site!
You’re styloids are still longer than average, and it’s not just the length which can cause problems but the width & angle too, & yours look quite angled…Your C1 processes look quite long too & adding to compression as you’ve noted. The nerves you’ve noted are commonly affected by ES, so this could well be attributed to the styloids. I never had the feeling of something stuck in my throat or trouble swallowing, the most common ES symptoms, either, so that isn’t a deal breaker!
It’ll be interesting to see what the doctors say that you’re seeing , but if you don’t get any help I think that it’s worth going to see one of the doctors on the list, especially one who is experienced with vascular ES & C1 compression, Dr Costantino in NY for example.
Let us know how you get on!
Hi @SoaringEagle - I agree with @Jules - not everyone has every symptom that ES can cause & some people don’t have the most common ones. The symptoms you do have are often those seen w/ ES.
As you noted, & I agree again w/ Jules, both of your internal jugular veins (IJVs) look to have compression, more from the transverse processes of your C1 vertebra than from your styloids, especially on the right side. Your left IJV is dominant based on its size compared to the right one.
A number of the cranial nerves “live” in the neck in the area near where the styloids are so when the styloids elongate &/or the stylohyoid ligaments calcify, those nerves are vulnerable to injury. The nerves affected by ES are the facial, trigeminal, glossopharyngeal, hypoglossal, accessory, vagus & possibly the vestibulocochlear. Your digestive & anxiety/depression/tense/racing body issues are most likely happening because your vagus nerve is irritated. Neck & trapezius pain are accessory nerve related; tinnitus & ear fullness are likely related to your IJV compression but can be trigeminal nerve or vestibulocochlear. Jaw pain is most likely trigeminal or glossopharyngeal.
ES symptoms seem to come & go w/o cause though triggers can sometimes be discerned & thus avoided (like sleeping on your stomach w/ your head turned to one side).
There is a series on YouTube called Two Minute Neuroscience with a two minute video for each of the twelve cranial nerves. Watching those will be helpful.
Here’s the link for the accessory nerve video to get you started: https://www.youtube.com/watch?v=e4IgAGuP_Hk
Here are links to a couple of posts written by Jules that will also be helpful for you:
