Does anyone experience pain in areas not traditionally seen with ES? Like the trap, clavicle, or shoulder blade? Or any numbness in the hand of the affected side?
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Welcome to our forum! I’m glad you’ve joined us but am sorry you’ve been diagnosed with Eagle Syndrome!
The answer to your question is that trap, clavicle, & scapular pain are pretty common ES symptoms. They’re caused by irritation to the spinal accessory nerve (SAN) by the elongated styloid(s) &/or calcified stylohyoid ligament(s). Numbness in your hand or arm can be a response to severe SAN compression or irritation, but it can also point to possible Thoracic Outlet Syndrome (TOS).
If your styloid(s) is/are elongated & you have SAN symptoms & possibly others you don’t recognize that are caused by ES, then the radiologist is wrong who definitively told you that you don’t have ES. Medical people who haven’t experienced ES themselves often lack understanding of how broad the spectrum of ES symptoms is.
Here is a link to a post @Jules wrote re: Common ES symptoms & possible causes:
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I had trap pain, SCM pain, scalene pain. I also had tension and trigger points in all of those. constant headaches originating in that same area around the base of my skull.
I’m now 6 weeks post-op from bilateral Styloidectomies and all the pain and trigger points and headaches are completely gone.
I hope this helps. 
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Hi @av8eire - Thank you for posting this update about your surgery. I’m so glad you’ve gotten relief from all those symptoms already. My symptoms came & went, came & went, for 4-6 months post op with the good days increasing & bad, decreasing as time passed, so recovery was a bit of a roller coaster ride for me. It’s so refreshing to read success stories where symptoms slip away more easily after surgery.
Who did your surgery?
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Greetings!
Both my surgeries were done by Dr. Osborne in Los Angeles. I’ve been very happy so far with the outcome from these surgeries. They were done 3 days apart in October.
Rob
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Thank you for your reply. Just wanted to know if there was another doctor we could add to our growing Doctors List but Dr. Osborne has been on there for several years. I’m glad you’ve seen an excellent ES surgeon, & I expect very good longterm results!
Good to hear you’ve seen improvements after surgery!
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Hi! Before i had any of the other more “major” symptoms of ES, I was struggling with severe pain in the clavicle, trap and scapula back at age 23-27 yrs old. That continued to worsen and then around age 32 i started to have the dysphagia, throat pain, then at 34 i had my first “mini stroke” symptoms.
Im just 5 days post op from right styloidectomy with Dr. Osborne in Los Angeles and already im seeing improvement in the neuro symptoms (eyesight, droopy eyelid). Im hopeful to see improvement in these musculoskeletal symotoms too. Dr. Osborne described this disease as progressive and Im a living testament to that description.
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Thank you so much for sharing this! Could I ask what all your symptoms were prior to surgery?
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Yes, but I also have abnormal emg’s in that area, I wake up and my entire hands are numb as well as awful pain in my arms and elbows. I do not have elongated styloids or calcified styloids. Its just my crappy anatomy. Still trying to find answers for all my abnormal emgs.
Hi @Chrysta0, sure! Heres a summary of my journey–
2015- severe GERD/reflux with chest pain: diagnosed with H pylori and GERD and treated with Abx and PPI— continued to have reflux symptoms and ultimately was advised I have “silent” or laryngopharygeal reflux. Continued on famotidine twice/day to now (normal EGD in
Jan 2024)
2015- pain of shoulder girdle, upper back and between shoulder blades and trapezius spasms – limited how long I could work at computer and caused problems to productivity
2016- pain in multiple joints, stiffness, elevated inflammatory markers-- diagnosed HLA B27+ spondyloarthropathy and later ankylosing spondylitis(<-- after this a lot of my symptoms were chocked up to autoimmune disease and led to delay in diagnosis)
2017- chronic throat clearing and coughing up mucous in the morning, protracted voice hoarseness after resp infections
2018- occasional dysphagia, ongoing upper back and neck pain-- had to leave my job to look for part time work
2/2021- left sided face arm and leg numbness, speech difficulty then headache-- stroke code, possible TIA, MRi brain nml so after cardiac/neuro/rheum work up i was diagnosed with hemiplegic migraine
2022-2023- recurrent “migraine” always right sided with worsening frequency and eventually not responsive to migraine meds.
5/2023- acute episode at work, with tremor of face and arm, off balance - took medical leave and was on disability ever since just trying to find relief enough to return
headaches were most often behind or above the right eye, throbbing and associated with vision disturbance
2024- vision blurring and white out on right side with looking down or turning head to the right, anterior neck pain and throat pain with swallowing, burning sensation from back of throat. losing voice when talking longer than few minutes. rapid fatigue of upper extremities. sharp pains in the right clavicle and sternum esp after eating- felt like heart attack sometimes
Things that helped-- lidocaine patches, benzocaine gel to the throat, tylenol, and especiallly botox injections (finally tried this in Sept and it helped me with the muscle pain and migraines immensely, enough to give me clarity that led me to the Eagles diagnosis with the help of my dentist!!)
Diagnoses I was working with:
Silent reflux
Chronic upper back pain
Hemiplegic migraines
HANDL syndrome (headache with neuro deficits and CSF lymphocytosis)
Mild C-spine spondylosis, loss of C spine lordosis
Normocalcemic hyperparathyroidism
TMJ dysfunction
Cervical dystonia
Mild carpal tunnel syndrome
Eagles diagnosis-- bilateral elongated styloids with R>L stylohyoid ligament calcification – causing bilateral internal jugular stenosis
Surgeon told my husband the R styloid was tightly adhered to the jugular/carotid sheath with some fibrotic tissue
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Wow, you have really been through it! I’m so happy you finally got a diagnosis, and surgery! Dr. Osborne sounds absolutely amazing – every time I read anything about him it’s always so positive! I have a lot of similar symptoms as you. Doctors are suspecting thoracic outlet syndrome, but they don’t think it should be causing some of the symptoms I’m having. After doing tons of research, I’ve noticed a lot of people with TOS also have eagle syndrome. I’m not sure if the two disorders run hand-in-hand with each other, or if they are just being misdiagnosed for one another. The really scary symptoms I’m having seem more-in line with ES, so I am jumping down that rabbit hole first. You are the first person I’ve talked to who has the clavicle, trap, and shoulder pain in addition to the other ES symptoms. I definitely suspect some sort of jugular compression. Did Dr. Osborne do any sort of jugular release as well? Or did he just remove the styloids and ligaments?
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I thought i had TOS too, for about a year (2022-2023). I was doing home PT and got a shoulder steroid injection. Then in March 2024 i went to see vascular surgeon due to ongoing issues with weakness and numbness of the right arm. He did an endovascular ultrasound and said theres no problem with jugular drainage at the arm or shoulder. That along with a CT angio of the right arm to rule out arterial issues basically ruled out TOS for me in April of this year.
Part of the reason I’d suspected shoulder problems is that I’d fallen multiple times catching myself with the right arm and figured I messed something up in there. Do you find yourself having balance issues? Or leaning to one side when you sit- like leaning on the forearm at the table? Theres a chance that this leaning is a result of Eagle syndrome messing with your vestibular system or other nerves that help with posture and you then compensate leading to injuiries and nerve compression on one side.
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I am definitely off balance frequently. Yes, I lean on my forearms. And I also tend to have very bad posture (which I’m working on). I’m quite sure I have TOS, but I’m really wondering if I have concurrent ES. I would love to hear updates on your recovery!
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I’m so glad that your surgery has helped so much, that sounds scary having your styloid adhering to the jugular and the carotid sheath…we’ve heard good things about Dr Osborne, it’s just such a shame that many can’t afford to have surgery with him because of the cost & him not taking their insurance…I hope that your arm & shoulder improve too 
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Yes I do/did. These were my first symptoms, along with a feeling that I couldn’t clear my throat, first rib pain and intolerance to heat. I had numbness feeling in my little and ring finger on the same hand. For years I thought I had a shoulder injury. My physio sent me to a musculoskeletal specialist who thought I had TOS but MRI’s came back clear. Even with this ruled out though, it still felt like something vascular and nerve related was going on with my arm/shoulder. Fast forward 10 years and I had a host of additional symptoms including some of
the classic ones. I was having agonising pain/pressure in the clavicle area directly in line with my jugular vein. I couldn’t put pressure on my left hand, say like trying to move myself around in bed. 1-2 days post surgery and that pressure isn’t there at the clavicle, though at this point trying not to put weight on my left hand.
Will see how things develop though.
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