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.
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.
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.
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.
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.
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.
Hey mate, symptoms of ES are next:
- pain on one side of neck or face
- ringing in ears
- feeling like something’s stuck in your throat
Take care of yourself!
Just want to amend your comment a little. ES symptoms can include pain on both sides of the neck/face if the ES is bilateral.
Thank you. I have just as many TOS symptoms as I do ES symptoms. However the ES shows up on CT and the TOS does not (TOS did show on doppler ultrasound studies and once on an EMG). It is all rather confusing. I am trying to find an ES surgeon in Canada and it is next to impossible. The universal healthcare system here works great for some things, but not for rare syndromes. I am frustrated as all heck right now - everything is COVID, vascular or cancer, but all other conditions are on the back burner and it will likely be years before I get any help.
We have a Canadian member who just had her second ES surgery on Fri. She’s in Alberta. Do surgical priorities vary from province to province? Have you checked w/ the two doctors on our list from your province? Just in case you haven’t, here is their contact information:
•Dr Eric Monteiro, Joseph and Wolf Lebovic Health Complex, Mount Sinai Hospital, Toronto 416- 586- 4800 (possibly treat ES, he has done a surgery with Dr Ian Witterick, who no longer does ES surgery.)
•Dr Michael Gupta, Hamilton, Ontario, Canada - https://surgery.mcmaster.ca/bio/michael-gupta
I hope referrals to some Canada docs are helpful and you dont have to wait years for relief.
Interesting the TOS showed up on ultrasound and also on EMG. Mine was diagnosed by a neurosurgeon who had developed a specialized MRI called a Neurogram. It shows nerves and whether they are compressed. I was lucky to have gone to this doc and was part of study. Generally you will not see these kind of soft tissue or nerve stuff on a CT. I just had surgery on one side for the TOS. It was a pretty simple surgery. No reason not to get the TOS fixed first if you cant get the ES surgery done right away. Im in the process of elimination with all my symptoms. I do next ES surgery in a week (yikes) it is coming up fast. I’m seeing a TMJ specialist the morning of the day I fly out for it. He will be able to track my symptoms before and after ES surgery.
I would think calcified ligaments alone in the neck can wreak all kinds of havoc especially if they are compressing nerves or arteries/veins.
Snapple is right about calcified ligaments from ES potentially causing problems in the neck & shoulder area which can also affect the arm. It would be worthwhile having ES surgery to see if you get improvement from TOS symptoms, & if so, surgery may be unnecessary for that problem.
Hi Snapple, I had a comprehensive TOS MRI but it did not show compression. May I ask who did your TOS surgery? And who you got referred to that is doing the ES surgery? Many of my symptoms are consistent with TOS (esp on left side), but I also have symptoms that are similar to ES … plus the ES showed up on a CT. I have been referred to see Dr Gupta
Hi Isaiah, thank you. My ENT provided a referral to Dr Gupta. I don’t know how many procedures he has done, or if he will even offer surgery. I will contact Dr Monteiro to see if he is doing the procedure. Any one here had surgery with either Dr Gupta or Dr Monteiro??
My TOS surgery was done at UCLA in Los Angeles by a Dr. Aaron Filler. He was the one (or one of the docs) that developed the specialized software for MRI that reads nerves. It is called a neurogram. Dr. Filler had already operated on my for scar tissue on my piriformis area. He has since moved out on his own from UCLA and had his own practice in Santa Monica:
You can find these specialized MRI’s elsewhere in the country now. A traditional MRI cannot pick up the nerves like with these. I had had several and they couldn’t find anything. Then I had one of these and cried (after 3 years of pain) when he told me about the mass of scar tissue compressing my sciatic nerve.
MR Neurography / MR Imaging of Peripheral Nerves (PNI)
MR neurography , or magnetic resonance neurography (MRN) , also known as MR Imaging of Peripheral Nerves (PNI) , is an advanced technique that is useful for diagnosing disorders of the peripheral nerves beyond the spinal canal.
I self referred to ES doc Dr. Samji in San Jose, CA after reading about him on this blog.