Hello everyone. I am so excited to know others with this disorder. My journey began about 6 years ago with severe pain to right tonsil radiating to ear. Then I lost my voice thinking bronchitis/laryngitis which can last a long time. I waited a couple of months before going to an ENT and was diagnosed with right vocal cord paralysis. I was concerned about the source of this and the pain. He did scans to rule out cancer and never addressed the pain. He said I needed to “insurance up” because I would need a lot of surgeries and that my insurance through my job was horrible. (voice returned after a few months). I had flare ups and constant pain. PCP would put me on antibiotic for “sinus infection” or “pharyngitis”. Did a CT sinus which is not where my pain is. Finally in December 2025 the pain became severe. A doctor put me on z-pak and steroid which did nothing. Lost 20 pounds and started having bad palpitations and fast heartrate whenever I stood up and during the night. Went to an ER and was told I needed to see pain management for “chronic pain”, no tests were done. Finally found a PCP who took my symptoms serious. Put me on levaquin, then clindamycin, then doxycycline for “sinus infection” and ordered CTs and lab. Antibiotic always helped the most of any meds (probably anti-inflammatory effects). Was started on metoprolol for palpitations. Went to a maxillofacial surgeon who prescribed low dose gabapentin for pain and referred me to Dr. Yadro Ducic in Ft. Worth, Texas. He is an ENT, plastic surgeon. He does head and neck oncologic surgery and skull base surgery. He is director or co-director of face transplants at a hospital in Dallas/Ft Worth area. He heard my symptoms and immediately thought is sounded like Eagle Syndrome. He made several referrals, one being to pain management. The pain management doctor also said it sounds like Eagle Syndrome. He placed me on increased dose of gabapentin which takes the edge off the pain. Also have tizanidine, Tramadol, Journavx - none of which help much with pain. Hot water bottle helps some. I have had multiple CTs sinuses and neck and angiogram/venogram (basically normal, found out I have a right fetal origin PCA which is bad if you have a stroke) and MRI neck with no mention of styloids, although they said the styloid ligament is okay. Went to cardiologist for fatigue and weakness. They said I had a heart attack in past (probably when had bad palpitations), and I have Grade 2 Diastolic Dysfunction. Now I am waiting to see a different cardiologist as the other did not take me very serious or explain anything well. Hoping he will clear me to have surgery with Dr. Ducic for styloidectomy. I am waiting to follow up with Dr. Ducic in April. My symptoms are: constant pain behind tonsil, inside ear, under tongue, left occipital area and neck to right of spine, left shoulder and shoulder blade. Pain near jaw and in front of ear, chest pain and left arm pain, pulsatile tinnitis, can’t find a comfortable position for neck when lying down, popping/clicking when moving head from right neck area. I was an ER nurse, then became a nurse practitioner. Worked for one year and can no longer work due to pain and symptoms. I lost my NP license since I have not been working. Sorry this is so long. I just want to help others by telling my story. Most doctors I have encountered have never heard of Eagle Syndrome, which is disappointing. Any input is always appreciated. Sorry you guys are going through this. Thank you so much for letting me be a part of this group. I am blessed to meet you all.
Welcome Cooky!! I am so sorry you have had so many symptoms for so long. Thank you for sharing your story. We have alot of symptoms in common and it can be so tough. You will find so many amazing and supportive people here 
Welcome Cooky! Sounds like you have been thru the ringer. Since you have NP background, I suggest you get your CT Venogram (Head & neck) on disk and upload it to several free DICOM viewers and get a link for a few of us to take look at. We are not experts or medical professionals but we have learned to recognize aspects of ES and where the styloids lie within the neck. I would take any radiologist reports that things are normal with grain of salt. It’s not uncommon for those with ES to vascular compression in the neck.
Although I didnt have exact symptoms as you, it did start out with shooting nerve pain up my neck to my ear and then it ramped up over 5 years. I eventually got dexamethasone and it knocked down the swelling and pain. Steroid taper didn’t help me. I started having botox in my jaw and temporalis muscles. Massage helped because my neck and shoulders were locking up because of all my pain and tension. If that is the case, dry needling might get the muscles to relax. The chest and arm pain and numbness could possible be TOS (thoracic outlet syndrome). It’s not uncommon to have a host a different diagnosis. I had ES surgery in 2020 however that surgeon did not address the IJV compression and Im heading back in next month for that to be fixed. Back to the neck, everyone is different what helps them. Do you see a chiropractor? Have you? with your neck popping and clicking when you turn your head, Id be careful about hard adjustments until you know where those styloids are sitting. I have found relief getting cranial sacral neck work. It is very gentle and subtle. Hard to find good practitioners. I hope Dr. Ducic will be someone who can give you proper reading on your scans and get you the DX. I also hope you get to a good cardiologist to evaluate all that is going not here. You sound like you are in agony. I remember driving 50 miles with an ice pack on the side of my head driving with one hand to get an injection to calm down my temple pain and it was excruciating. My go to is oxycodone and even that barely takes the edge off. I feel your pain. Hang in there. This a great source of support here.
Thank you so much. I will look into the suggestions. Stronger pain meds would be nice at this point. Best of wishes.
So happy to be in a support group! Thank you so much.
Hi & welcome to the site!
I’m sorry that it’s taken a while to get diagnosed & that you’re unable to work, that’s rough 
Good that you’re seeing a doctor who’s aware of ES, and hopefully he’ll be able to remove the styloids for you…I’m glad that you’re seeing a cardiologist, as the chest, jaw & arm pain could be angina? But equally ES can cause jaw pain (nerve pain with the facial or trigeminal nerves), chest pain if the carotid artery is compressed, or possibly vagus nerve irritation, and arm pain can be caused by irritation of the spinal accessory nerve…
We do have a list of questions as well as info about surgery in this section:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I’m not sure if you have any other vascular symptoms; pulsatile tinnitus is often caused by IJV compression, so if you have any other vascular symptoms it might be an idea to look into that before you go ahead with surgery- although if Dr Ducic is a skull base surgeon, then hopefully he would remove the styloids right at the base of the skull which is ideal for a successful surgery.
If you’ve not seen the section about common symptoms, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There’s info about pain relief here as well:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope your appointment comes round quickly