My Eagle Syndrome Story

General Eagle Syndrome Stories
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I am a 58 year old male. I have/had been suffering from Neurocardiogenic Syncope (NCS), high blood pressure, cervical and lumbar pain, cervical spondylosis with myelopathy, along with Sleep Related Rhythmic Movement Disorder (SRRMD) since birth.

My conditions presented themselves over the years with the following symptoms:

  • Inability to sleep or get a restful night sleep
  • Headaches
  • Ringing in my ears
  • Inability to concentrate and/or comprehend
  • Memory issues
  • Pain in my jaw, neck, arms and legs
  • Tingling or numbness in cheeks, jaw, neck arms and legs
  • High blood pressure
  • Autonomic nervous system issues
  • Autonomic dysreflexia (AD)
  • and more that l cannot think of now

Since childhood, l have had to bang my head and make audible noises when trying to get to sleep. I am a stomach/belly side down sleeper. Once asleep, l often do sleep on my sides and back. This changed around 8 years old when l was embarrased to sleep over at friends home. I then began to try to hide my head banging and audible noises. I started to gyrate or push my hip and legs into the mattress.

My youth and now adult life is dramatically affected by my sleep habits and patern. If l am stressed or have anxiety, it seems to take longer to fall asleep. I notice that l am very rigid sleeping and it had taken its toll on my whole body. I believe it has caused my multiple issues with my neck (ES), back, legs, and not only cognitive skills, but also my memory to fail me. (Note: my mom had slight dementia and has passed)

I found out my bilateral elongated calcified styloid ligament process (Eagle Syndrome) via Xrays and CT scans done prior to getting dental work done (Invisaligns). I then began my quest for the best medical advice. I have good insurance and I was able to get referred to a good Ear Nose and Throat (ENT), who referred me to an Out of Network surgeon at U.C. Davis Medical Center, Sacramento, California.

March 2023, l had my right-side elongated calcified styloid ligament process removed. It was well worth it and the surgeon, along with all the staff, exceeded my expectations.

I did have a decent amount of post operation pain, especially in my neck, cheeks and tongue, because the calcified bone had become entangled in my tongue. The surgeon had to use a lot of traction on my tongue. My longterm positive results were worth the slight numbness I still have in my cheecks and occasional spasms. I have much less ringing in my ears and pressure in my neck on right-side. I was hoping the removal would have helped in my NCS and other issues, but it did very little, if anything at all.

I plan to have my left-side elongated calcified styloid ligament process operated on and removed as soon as l recover from my January 27, 2025 Anterior Cervical Discectomy Fusion (ACDF C4-C7) surgery.

My current goals are to continue my journey by letting others know my story, seek professional help and intervention for not only my Eagle Syndrome, but my other outstanding medical issues.

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I’m so sorry that you have such trouble sleeping! I have some rough nights (tonight being one!) but not every night , so I feel for you… I’ve never heard of NCS, do the doctors know what’s caused it?
Have you had surgery for ES, has it helped at all? Some members have had vagus nerve issues, I don’t know if there’s any connection between ES, vagus nerve irritation & your nmedical condition?

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I forgot to mention my ES surgery, so I just edited my message. Thank you for your question(s).

I was hoping the right-side ES surgery would have helped with my other issues, but it did not.

I have not been able to target my NCS triggers or exact origin, however l have been able to get some relief from syncope and pre-syncope by taking Clonazepam 1mg as needed.

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What a journey you’re on…we do see unfortunately that some members do have to have both sides operated on before symptoms resolve, so hopefully your second surgery will help. It’s tough that you’ve just had to have another surgery on your neck…but glad that the clonazepam does help somewhat, and that you do have some positive results from surgery.

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@THughes - I’m sorry for your many health challenges & that they’ve had a life long negative effect on you. I hope your recent surgeries & upcoming second styloidectomy will be helpful in allowing the worst of those symptoms to resolve or at least reduce.

I also had tongue symptoms as part of my ES symptoms profile. In my case, it was my glossopharyngeal nerve that was being irritated by my styloid. The symptom was a feeling of severe pressure on the back left half of my tongue. When my styloid was removed that symptom went away. I had to have both of my styloids removed to get good symptoms resolution. After my first styloid was removed, many of my symptoms actually got worse. In retrospect, we think this happens because having one styloid removed in bilateral cases, can leave an imbalance in the neck which may put more pressure in an area that is already stressed. That said, not everyone who has bilateral ES needs both styloids removed, but unfortunately, that wasn’t true for me & many of our other members.

I agree w/ @Jules, that your NCS might be related to vagus nerve irritation by your remaining styloid. I also had some bizarre heart symptoms which did subside after my second surgery. Hopefully that will be the case for you.

We have a UCD doctor on our Doctors List who has done ES surgery for at least one of our members - •Kaicheng Lawrence Yen, MD,. I’m wondering if that’s who did your surgery. If not, I’d like to add the name of your surgeon to our Doctors List if you don’t mind sharing it. We can always use more names of competent ES surgeons.

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Thank you for sharing your experiences with me. I plan to have my left-side styloid removed at some point. Dr. Yen was who did my left-side and l plan on him doing the right-side as well.

I have nothing but great things to say about Dr Yen, his staff and the surgery.

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I’ve just clicked on your avatar & realised what your pic is :woman_facepalming: Pretty decent length styloid!
I’ve added Dr Yen’s name onto our list, thanks for the info!

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I looked at your styloid image yesterday & noted it has an “elbow” - all the more reason it was causing you trouble! I’m glad Dr. Yen was helpful for you. Our other member who saw him, @Bluemaple, had bilateral ES, too, & gave him great reviews after each of her surgeries.

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Thank you for your comments. I am still trying to determine what causes my syncope (NCS).

I have had my right-side elongated calcified styloid ligament process removed back in March of 2023, and plan to ge the left-side done as soon as l can.

I would definitely give Dr. Yen high review marks.

Interesting that Isaiah point outt the “elbow”. I never really thought about it, but most do appear to be rather straight; not all of course.

Perhaps thats why they had to use a lot of traction on my tongue in order to successful remove. The calcified bone had entangled my tongue.

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@THughes - YIKES! That’s pretty scary about your tongue/styloid entanglement. I hope that scenario doesn’t exist on the other side! I also hope you can get your next surgery scheduled ASAP. Please let us know when you have a surgery date.

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