Hello! I have been experiencing a plethora of symptoms over the last three years, and have been unable to get a diagnosis. I recently stumbled across the existence of ES, and I think it might be the best explanation for what I have been going through.
Hi & welcome to the forum!
I think probably all your symptoms have been noticed by some members with ES!
There’s info in the Newbies Guide Section about common symptoms if you’ve not seen it, you might even come across some more, here’s a link: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Briefly, hearing your heartbeat in your ears can be pulsatile tinnitus, which can be caused if the internal jugular veins are compressed by the styloids.
If the vagus nerve is compressed then this can cause anxiety.
Jaw pain can be caused by compression of the Trigeminal nerve, but lots of members also have TMJD alongside ES.
If the stylo-hyoid ligament is calcified then this could potentially affect the hyoid bone, otherwise some members have hyoid bone syndrome (elongated hyoid bone processes). The trigeminal nerve is commonly affected & this could possibly cause a dry mouth, the hypoglossal nerve & glossopharyngeal nerves are also often affected, this could possibly be causing the pins & needles in your tongue & the globus sensation is one of the most well-known ES symptoms.
If you’re able to get a CT of your head & neck (from the skull base to the hyoid bone) this would show the styloids, & ideally if you could get a CT with contrast the you would hopefully be able to see if there is any compression of blood vessels. You should ask for it to be evaluated for ES, for the styloids to be measured & looked for width and angle…ask too for the hyoid bone to be evaluated, and ideally get copies yourself , then you can use them if you do think you have ES to send ahead to any doctor you want to be referred to. Given your symptoms I would say it’s worth looking into ES & trying to get a CT…
Hi Schtank, this is the best group for ES, so much info and helpful people. I can relate to many of your symptoms; especially eustachian tube dysfunction (there has been a little discussion of it, @Chrickychricky has talked about it I believe), anxiety and TMJ. I will say the TMJ I had was more muscle based, so physical therapy helped a lot. Dry needling and at home exercises, but symptoms persisted so I pursued ES.
Jules made several good points, the only other I might mention is look at the Dr list, which I always have a hard time finding…sorry, @Jules or @Isaiah_40_31 can link it I’m sure. There are only so many Drs for ES, and so your local Dr maybe willing to order imaging and everything, but if you go the surgery route you want someone that is well experienced in it. I found several Drs and then search the names in this forum and the ES facebook group so I could read testimonials and build confidence in the outcome
Hi @schtank, sorry to hear you are having so much trouble with pain and unusual sensations.
I have a lot of these symptoms, even the heartbeat in the stomach one - which can get very exaggerated at times. It definitely sounds to me like getting further testing/imaging for ES would be beneficial.
All the best and look forward to hearing how you get on.
Thank you so much! I was looking through the list last night.
ETD is by far the most annoying symptom I have, although it makes me feel a lot better knowing that others are experiencing it as well. I guess misery loves company
Thanks for the reply! I am very happy I found this community. I have not found anyone who is experiencing the niche set of symptoms that I have the past few years.
yes, the ETD is the most annoying! I’m fully expecting mine to heal and get functional. I just had my left side removed on 11/11 and that ear seems to be doing better already. Its gotta just be from compression ya know, stuff that needs to move just doesn’t have the space due to the styloid.
Yes it’s amazing how good you can feel when you feel like you are being seen. I only found the group a few weeks ago (out of desperation as my symptoms are getting worse and more intense). I’ve since found a surgeon who is willing to operate and have surgery booked in 2.5 weeks time, if insurance all goes through. Fingers crossed.
I’ve had this for 10 years now and I can not do much without being in a lot of discomfort these days. I work behind a computer for work and can not hold my head for more than a few minutes without feeling like I’m straining the ligaments in that area of my neck. So I’m off for a bit until surgery. It’s been a long road (from symptoms, to years of consults and imaging to no avail, to learning about es, to requesting specific imaging, and then finding someone who acknowledges the symptoms/cause and will help). I think if you made it here (to the forum), then you should trust your instincts and push for answers.
