Symptoms of Eagles Syndrome?

Hi folks, I am asking others what their main symptoms are with Eagles Syndrome. I have symptoms that are similar to neurogenic thoracic outlet syndrome (NTOS) and this has been indicated by a neurologist. But then I get a diagnosis of eagles syndrome too.

I have a lot of neck pain but also a lot of my symptoms go down the arm, into the hand and also into the scapula. Do others get these symptoms too? Or is it localized to the neck and head? I am sure there are multiple ways for ES to present itself - I just want to make sure it is the root cause before looking at surgery.

My neck symptoms are a choking like sensation, a throbbing at the back of the neck, sharp pain at the front of the neck, and tingling in the back of the throat. No pain in the teeth, jaw or eye.

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I have also been diagnosed with TOS but only on the right side.
I get tingling in my fingers and vibrating in my feet. I also have dizzyness and tinnitus. As far as neck specific, I live with neck pain and tightness as well as a constant headache. I also feel a choking sensation occasionally when I eat that is worse when I eat cold things.

My pain is in my head, neck and down my shoulder and arm. Sometimes my fingers and forearm feel a little bit numb and weird. I also get pulsatile tinnitus and dizziness.

Hi bmcdiddie,

Eagle Syndrome can have wide reaching symptoms. The ones you have w/ regard to your hand, arm & scapula, though not as common, do sometimes occur because of impingement of the accessory nerve by the styloid process. Your other symptoms are more typical of ES but because up to 6 of our 12 cranial nerves can be adversely affected by ES, the symptoms can range widely from gastrointestinal to heart/blood pressure, to neck, throat, vocal changes, to tongue/mouth/teeth, facial, ear, eye & head pain.

My recommendation is to take care of the thing you know you have for sure (which is ES) & see which symptoms resolve then deal with getting a diagnosis for what is left if your life is substantially impacted by the remaining symptoms. If you have bilateral ES, most often, both styloids &/or stylohyoid ligaments will need to be removed before you will get full symptoms relief. Usually by about 2 months after surgery, you’ll be feeling pretty good & residual symptoms will disappear over the next 6-12 months. It’s also very important for the styloids to be removed back to the skull base & the stylohyoid ligaments to be removed if there is any calcification on them.

This is so challenging to figure out. I had a right styloidectomy because of jugular compression and calcified ligaments. But I had more symptoms on the other side. I am 3 months past the styloidectomy and it absolutely helped my neck tightness and stiffness on that side and relieved the variable pressure changes I often felt in my head. It also helped my pots. I still have jaw/ear aches on the other side and neck tightness and spasms. They think there is some TMD involved on that side because of inflammation from one of my autoimmune diseases. My CT showed some ligament calcification but the styloid looks ok on that side. I also have bilateral brachial plexus entrapment with possible TOS which gives me neck, shoulder, chest, back, shoulder pain along with arm weakness. I’d say get the Eagles taken care of first since you know that is a confirmed problem. Sorry you are dealing with this.

Hey outdoorgirl,

Good to hear from you! Actually, some of the symptoms you mentioned could go away if you had the calcified s-h ligament removed. Calcified s-h ligaments can also cause significant ES symptoms even in the absence of elongated styloids. Just a thought.

Hi anharris - do you also have a diagnosis of ES? If so, which is your focus for intervention - the TOS or ES?

Argh this is so hard to figure out. I really think my ES is an incidental finding and not something that is causing all my other symptoms (cold hands, raynauds, clavicle throbbing, etc). But maybe I am wrong. For years TOS has been indicated but now I have a CT that shows eagles syndrome …

I have bilateral ES and we are focusing on that first. I’m still not entirely sure what symptoms are from the ES and what’s from the TOS. In addition to that, my neurologist was more concerned about the compression on my jugular veins. The only thing I know for sure is a TOS symptom is when I lift my arms above shoulder level or try to hold them at shoulder level for longer than a few minutes my hands/fingers will start tingling. Almost like they went to sleep from being sat on too long.

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My pain is in neck / ear and jaw. I have been living with chronic headache, neck pain and tightness for years. Regular massage is all that keeps it managable. I had surgery for TOS on one side many years ago. Had multiple hand and wrist surgeries primarily from nerve entrapment re: scar tissue suspected from ehlers danlos (connective tissue disorder). The TOS was caused my nerve entrapment too. The TOS surgery helped with the nerve issue there once released but still living with overall muscle tightness in neck, skull, shoulders and head. My arms and hands turn numb all the time. I have been living with chronic neck instability and TMJ for years and honestly hard to tell what causes what anymore.
My first major pain ES flair in 2015 was shooting nerve pain up my neck to my ear that started with what I described as a bone in my throat. The pain switched sides in past 5 years until my ES diagnosis last dec. Ive had one side done and going in for next in a couple weeks. My pain was so bad in Dec, that I was willing to do anything to get out of that pain. That’s why I chose surgery. I had already tried all kinds of different things, PT, OT, massage, injections, and it was only getting worse. Generally ES worsens over time. The ES can cause the neck, back and shoulder pain as well. Everything is all connected. I suggest taking care of ES first like others.

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Thank you for pointing that out. I wondered if just calcified ligaments could cause these symptoms. I see Hepworth later this week for my 3 month follow up and will be asking about this.

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