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Eagle Syndrome - Online Support Group

New To this Forum

Hi Eagles,

This forum was really helpful, excellent resource and been reading this since i’d been diagnose with Eagle Syndrome. I’m a Registered Nurse and Graduating Nurse Practitioner Student that based in NYC. I just feel frustrated that i take care patient but i cant even take of myself and chasing for right answer. I relate myself to all the stories that i read in this forum. It took me 5-6months of continuous searching before they diagnose. From my PCP, referral to ENT, Neurologist and TMJ specialist. Mostly everyone here is right, only few doctor has a knowledge in ES and most doctor dismiss you and tell that theres nothing wrong with you.The symptoms of ES was so vague, that doctor can give thousand of multiple differential diagnoses and eagle syndrome is the least to be diagnose. These doctor think of me as hypochondriac patient, i almost ended up goin to psychiatric doctor, thinking maybe its all in my head. But i know myself, i know my baseline and i know there something goin on with me. It need to be stopped and we need to see the appropriate doctor in order to be evaluated with this rare disease.

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Hello,

I don’t know if it is helpful, I went to my dentist last Thursday and he gave me a pano x ray. Then he came in and showed me the line on the x-ray like a crooked stick, and said you have ES. He told me that he didn’t know a lot about it.

I came home and googled, ES and I believe I cried with relief at knowing what has been going on for at least a year and is getting worse rapidly.

I am a great fan of dentists, they really know the head and neck. Today he showed me where the line ended under my teeth on the L side where all the symptoms are.

I’m not shy about sharing my x-rays if you want to know what it might look like.

Keep in touch

Your story is painful, but sadly nothing new, & members have often been sent for psychiatric help by doctors who don’t believe them- so I do feel for you…
What’s your next step? Are you going to have surgery? (There’s lots of info in the Newbies Guide about what to expect, & in the past discussions if you’ve not already seen) Is the doctor who diagnosed you willing to operate, or will you have a look at the doctors list? It can be worth travelling to see someone with experience if you’re able.
Best wishes on your journey!

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Hi MJ_RN

Congratulations on your accomplishment in becoming a Nurse Practitioner! That shows a lot of dedication!

We have found the doctors who are most often willing to do ES surgeries are ENT throat cancer specialists who are skull-based surgeons. Maxillofacial surgeons also often have skull-based surgical experience along w/ some neurologists. You want to avoid any doctor who thinks that breaking the styloids by external manipulation & leaving the pieces in your neck is a good idea. We have had a few members who’ve had this experience. It was not helpful.

Part of the reason ES is hard to diagnose is that the symptoms can be very wide ranging. This is because they mostly stem from irritated cranial nerves &/or impingement of the internal carotid arteries &/or jugular veins. Many doctors don’t think about the fact that many of our cranial nerves share space w/ the styloid processes & stylohyoid & other ligaments. Thus, they don’t consider that elongated styloids, calcified stylohyoid ligaments, or both, could be irritating cranial nerves which cause the wide ranging pain & other symptoms people w/ ES experience. Since you are in the medical field, do some research on the cranial nerves & what areas they innervate or affect. These in particular are often bothered by ES: trigeminal, facial, hypoglossal, glossopharyngeal, accessory & vagus nerves. The vagus nerve in particular affects a huge number of functions in our bodies & thus can be responsible for many ES symptoms.

I’m glad you’ve been diagnosed. Now comes the “fun” of finding the right doctor to do your surgery so you can get on with your life. We are here to help you with that to some degree. You can search the forum for lists of questions to ask when interviewing a surgeon about ES surgery & also the difference between intra-oral & external surgeries. There are many discussions on the forum about both approaches. There are also videos on YouTube of both types of surgery if you want to watch them.

I hope this info is helpful.

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Hi MJ!

First, excellent you are narrowing down your health issues.

RN here as well. Very similar symptoms - or shall we say, lack of…for probably years but then last December, I noticed the “lump” behind my tonsil. Even then pcp was not very helpful. Luckily we have an incredible ENT in our little town. He really is an inquisitive, creative soul who had experience with Eagle Syndrome. Even though radiologist thought CT normal, ENT really took time to review scan and diagnosed calcified styloid process…even though obviously something was there.

I encourage you to continue your perseverance. It is hard work but be your own advocate, just like you would for one of your patients. You are worth it and I know your experience is already helping others, I am sure.

Also encouraging you to share your journey with the folks here. They are so kind. They look over scans and such and help you move forward.

Hang in there and I hope you find an experienced health care provider that will help you move forward.

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Hi Everyone,

Just an update. I know everyone struggle with this disease. Please continue to advocate for yourself because this disease is curable. We need to be grateful its benign although it affect our quality of life. In my case i exhaust everything to find the answer and took me 6months. Im currently working as Oncology and Bone Marrow Transplant RN in NYU langone Health. I used my connection to refer myself in appropriate doctor. Then i found Doctor Mark Delacure which is a Head and Neck Placstic Surgeon and ENT in NYU Langone. I present him my case all my imaging and blood works from my PCP, Neurologist, ENT and TMJ specialist. He listened to my story and i did one more imaging which is Neck CT with contrast the following day for confirmation and book me for tentative surgery the following week. I did my surgery of left stylohyoid ligament calcification resection last Monday and 48hours post op. Still some pain and my throat was sore. I still have a some tinnitus but the shooting pain in the jaw to my ear was gone. I know it takes a while to fully recover with this. I want to be an advocate for everyone here to never stop and listen to your body which is crying for help.

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Oh my goodness, you got to surgery so fast! I love your proactive tenacity. Congratulations! Heal well and keep those updates coming for those of us still waiting…

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Glad that you have been able to have surgery so quickly & have noticed some improvements already!
Thanks for the info on your surgeon- he is on our list but we didn’t know who has had surgery with him, so glad that now we know someone who has!
Make sure you take it easy & look after yourself while you heal! :bouquet:

Hi Peepz,

Post op - day 5. Some soreness and disturbed nerve from surgery. Hope everyone is doin well.

Your incision looks great for being only 5 days along! So glad you’re doing so well, MK_NY!!

That looks really neat! Healing well! Make sure you take it easy, over doing it if you’re feeling good can set healing back…

Hi there, are you feeling better since your post?

I just found out that the wait for an ENT appointment is 3 - 6 months, so need to be patient. I had my throat ultrasound and my arteries are great (even though they sound like the dental tool that vacuums your mouth).