Hi everyone I am new here, and newly-diagnosed with Eagle Syndrome by my orthodontist. He had identified calcification in 2003 & just took a new panoramic jaw Xray to confirm that a great deal more has occurred in the 14 intervening years. It has been been so helpful to read y’all’s posts!
For example I see now that the CT scan is the standard for full diagnosis of ES - I must get one. My symptoms are somewhat different from the standard ES symptoms & I would be happy to hear anybody’s views on this. I gather that the tinnitus, vertigo, snapping neck pain, & muscle spasms I experience are typical; I also experience difficulty raising my left arm - familiar to anybody? I’ve only seen one other person who had this.
I do not have the throat or tongue symptoms, or the vascular symptoms, and the elongated styloid is not particularly noticeable or sensitive when palpated. For these reasons I guess, my efforts to get care from the ENT surgeon my orthodontist sent me to were dismissed. I see that healing will be a much longer road than I thought.
You are on target when you noted that your ES symptoms don’t totally line up w/ those of others on this forum. There are a set of “standard” symptoms some of which you have but there is another set of symptoms many of which seem to be unique to the individual experiencing them. There was someone on this forum quite awhile ago who had the type of arm trouble you’re having. There is a cranial nerve (can’t remember which one) which does affect a shoulder muscle which in turn affects the ability to move/raise the arm. In the particular case I’m recalling, the guy felt like he had a weak arm or arms (can’t remember if it was bilateral). Perhaps that the case you were referring to.
I had bilateral ES, & my symptoms were different on each side. My right side was more vascular - mostly blood pressure & heart issues when I exercised hard; whereas my left side had more typical throat, ear, eye, & neck pain. It is a curious syndrome especially as regards the symptoms it causes.
Healing after surgery does take a good couple of months. Most people begin to be able to resume activity, but at a reduced level, 1-2 weeks post op.
Thank you so much for your message! It is a ray of hope to connect with others with greater understanding of this than I have. What you describe related to the guy on the forum from before is precisely what I experience - a sense of weakness, heaviness, restricted range, related to movement of my left arm. A physical therapist observed that some muscles in my shoulder were not apparently working on my left side, and so I surmised, as you say, that these muscles are key to strength & stability of arm motion. My symptoms are very close to the ones described here:
My Xrays show bilateral calcification but I have no symptoms on the right side. I am eager for more information about obtaining conclusive diagnosis &
treatment - it was my orthodontist - I had braces in 2003 - who ‘diagnosed’ me & used the term Eagle Syndrome.
Like you, I initially only had symptoms on my left side & that’s what led to my ES diagnosis. I was very surprised to see my CT scan results showed bilateral ES. Unlike you, I never had shoulder/arm issues.
Over a period of just a couple of months after my CT scan, I began to have vascular symptoms on the right side but only when I exercised hard (i.e. anaerobically). Because of the angle of my right styloid, my surgeon opted to shorten it first though I begged him to take the left & very painful one & leave the right side for later . In retrospect, he was wiser than I, and my vascular symptoms ceased several months after that first surgery.
Hopefully when you have surgery, you’ll have the same results as the gal in the link you sent. Relieving pressure on nerves sometimes gives immediate symptom relief & sometimes takes a bit of time for symptom resolution depending on how irritated the nerve(s) is/are.
Thank you for your message! I hadn’t realized that vascular symptoms occurred on the right side. I have much to learn.
First step for me is obtaining the CT scan - my orthodontic films are useful but not adequate, I see. I met with an ENT specialist a month ago who declined to pursue ES & didn’t want to order the CT scan.
I have an appointment in a couple weeks with a different specialist in the same practice - I am nervous that I may be dismissed a second time. If you have any advice about obtaining the CT scan I would be very happy to hear it.
Best advice is to get as well-informed as you can, and print off info, like for example conclusions from research papers which support your symptoms, like the one you’ve found and also there’s suggestions and links to some in the Newbies Guide. Take that with you in case you have to argue your case- if there are proven cases with the same symptoms that you have, doctors can’t argue that you’re imagining it (hopefully!). There are also research papers where the authors say a CT is the best tool for imaging the styloid process, which again you could print off and take.
There’s also a list of doctors familiar with ES in the Doctors Info section, so if you have no joy with your next appt. maybe you could try to be referred to someone else. If there’s no doctors in your area, you might want to travel a way, or otherwise try a different speciality- my op was done by an otolaryngologist, and some people have been treated by neuro or neurovascular doctors- it doesn’t have to be an ENT.
Hope this helps!
Thanks for clarifying. In the past couple weeks I have noticed an elevated heart rate - I notice it particularly at night, when I sense my heart just pounding all the time.
This may be just stress. I had assumed I had strictly the non-vascular version of ES if I in fact have it at all.
Eager to find a doctor who can help create a picture of what’s happening!
