Symptoms, surgery & progress report at age 69

General Eagle Syndrome Stories
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First post, maybe others here can find something of interest. Some of the following symptoms I’ve had over many, many years include: Bilateral loud somatic tinnitus in several tones combined into a constant high-pitched unwavering tone. This tinnitus bounces with each step when I walk and can be modulated (amplified) with movement of jaw, head, neck or scalp. Tinnitus can only be lessened but not totally dissipated by applying light pressure with a fingertip to upper two front teeth or upper palate. Hearing loss-bilateral. Dizziness, especially when lying flat and trying to arise. Various digestive issues, overall poor digestion. Attacks of burping of air that can last for days. A feeling of being wired & tired at the same time. Fatigue. Big “crashes” after meals. Attacks of extreme itching at ear openings and in ear canals (not found to be dermatologic). Mild psoriasis and, worse, accompanying psoriatic arthritis. Inability to easily reach emission phase with wife. Needless to say, all of this does affect quality of life. Doctors visited about symptoms over 30 years include: Rheumatologist, gastroenterologist, heart specialist, audiologists, ENTs, dermatologists, primary care physicians, neurologists. Three years ago I decided to tackle this again and saw a nerve specialist in Scottsdale, Arizona who tested extremities, found no issues and then referred me to Scottsdale, AZ neurologist Dr. Stephen Flitman who ordered a battery of tests, which led me to Dr. Nikhil Mehta. Digital motion CT scans were performed in his office wherein I moved my head around to induce amplification of my tinnitus (can easily do that with bilateral somatic tinnitus). The scans showed both internal jugular veins were being compressed between elongated styloid process bones and the transverse process “horns” of vertebra C1. I was shown the images in real-time, as I was awake for the tests (but not for the femoral insertion of the needle and dye). Dr. Mehta looked at me and his staff and said, “There! Do you see it?”. After the test was completed I was referred to Dr.Peter Nakaji of Scottsdale, AZ. On October 22nd of 2025, styloidectomy and decompression of the IJV and Vagus nerve on the right side was surgically performed by Dr. Nakaji. I noticed, just after coming out of anesthesia, that tinnitus in the right side had dissipated significantly…an immediate plus. There is still tinnitus on the right, but it’s down and I’ll take it! Nearly three months later, some other symptoms have improved: There is less pressure in the head and some of the high-end frequencies have returned in the right ear. I feel somewhat more steady on my feet and am experiencing less of a crash after meals. Obviously, there is better blood flow through the right side IJV. I am scheduled to have the left, worse, side addressed with same surgery in February, 2026. What I have learned from all of this? The digital motion CT scan was absolutely the key in finding the cause. The path from Dr Flitman to Dr Mehta to Dr Nakaji took some months, but it was all very well-worth the time and effort. I’ve also learned that the other doctors I saw prior to this could not possibly have given a correct diagnosis. (I will, eventually contact them to let them know about Eagle Syndrome and its vascular variant.) I’ve learned that the cautious approach to surgery is the best approach, as it gave both myself and the surgeon needed time to evaluate post-surgery symptoms. Realistically speaking, I am fully aware that this condition simply could not have been detected 10-15 years ago. While it is easy for me to look back on a troubled lifetime, I can accept it all now as being in the past and I can look forward to having an improved quality of life. I don’t expect ALL of my symptoms to magically disappear like drinking from the Fountain of Youth, but I’ll gladly take any and all improvements.

Tried and failed to attach a screenshot of my left side. Surgery will remove most of the styloid process and some of C1 transverse process, thereby decompressing the IJV, Vagus nerve and other affected nerves in the immediate area.

Thanks for reading. Kurt, Arizona.

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My goodness what a journey! Thank you so much for posting your story. I am glad that you are getting some relief. My adult daughter has her first appointment at the end of this month with Dr. Nakaji. She will have a CTV with Dr. Mehta before her appointment with Dr. Nakaji. Her journey of being misdiagnosed was six months and during that time she was admitted to the hospital and diagnosed with a blood clot in her right internal jugular vein. They said that they didn’t know what was compressing her jugular which caused the clot to form. The doctor put her on Eliquis and discharged her. No one had any answers. We desperately did research until we found Dr. Nakaji. He took one look at her hospital imaging and saw that her jugular is trapped between her styloid and C1 and he accepted her as a patient a couple of days ago. We are so relieved! (My daughter’s Vascular Eagles was caused by a negligent chiropractor not certified for upper cervical manipulation. ) Thanks again for posting your journey and for posting your good news!

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Well, you are on the right track, then. You’ll find Dr Nakaji to be a very pleasant man and his staff are all first class, too. If he does a surgery, most likely it will be done next door at Honor Health hospital. I stayed one night there, post-surgery, and went home the next day. (The staff there at the hospital had nothing but positive things to tell me about Dr Nakaji). I always felt my issues were due to nerves, but it was proved to me through imaging that the IJVs and Vagus nerves were compressed by the styloid and C1 bones, therefore it was blood flow AND nerves. Can’t say if a neck injury contributed at all to my case, but the imaging showed the styloids as being elongated and pointing backward in the wrong direction, thereby trapping the IJVs, et al, against C1. Most likely they just grew that way. As a child I had very painful earaches, alleviated by tonsillectomy, but have had some form of tinnitus throughout my life. Anyway….tell your daughter to hang in there and to exercise patience during this process.

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Thank you for the encouragement and for the helpful information. I also greatly appreciate you telling me about your experience. Knowing what to expect helps a lot!

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One other thing to maybe keep in mind: Both Dr. Mehta and Dr. Nakaji related to me on how this condition is still not widely recognized, that it is relatively new and, because of this, there just aren’t that many who are specialists in this field. This must be accurate, as it took me decades to get to this point. The symptoms are very real, but are so widely varied that no one doctor I went to over the many years for help could narrow it all down. I can’t blame any of them because, well, they are schooled in other things. I think, though, going forward things will rapidly progress toward a wider understanding of issues caused by Eagle/Vascular Eagle Syndromes. For sure, I will make post-surgery reports to all of the specialists (in other fields) I’ve seen over the 30 years, but not to chastise them, only to help them become more aware.

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It is so unfortunate that you suffered for so long without answers and I am glad that you found Dr. Nakaji. I am glad that my daughter finally found him too. This really does need to be taught in medical school.

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Hi Kurt & welcome!
I’m so pleased for you that you’ve seen some improvements since your surgery! Hopefully you’ll see more if you need the second side doing as well, we’ve seen that quite often here as there can sometimes be a cross over for pain & nerve symptoms. And nerves can take up to a year to heal so patience is needed with some symptoms. It sounds like your vagus nerve has been irritated, you might find this discussion interesting about symptoms that resolved:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
You’re right that there wasn’t much awareness years ago about vascular ES, certainly the C1 shaves are pretty new. I had my surgery nearly 10 years ago, the doctor I saw in the UK was aware that the styloids can compress the IJVs & had researched pulsatile tinnitus, he has written a paper a while back…unfortunately many doctors are still ignorant about the varying symptoms ES can cause & only recognise one or two, so if you can educate some of your doctors that’s great!
We have quite a few members waiting for surgery with Dr Nakai, so I’m sure your post will be encouraging for them, so thank you for sharing your story.
I’ve done an admin fiddle, you weren’t able to post the images as you’re a new member, but you should be able to now, just make sure you delete any personal info to protect your privacy.

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I forgot to say too that tonsillectomy is a known cause of ES, so if you’ve not had a neck injury, it might have contributed…

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Thanks Kurt, I’m scheduled for first surgery (right side) on Feb 16th. Great to hear about your experience.

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Well, if they keep you there until the 18th, stop over into pre-op and say hi! You’ll find, as I did in October, that the nursing staff is first class and the hospital food is way better than average. “Break a leg!” as they used to say to actors prior to stage performances.

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Want to clarify here that the test that proved beyond doubt that the IJV was being compressed with head movements wasn’t a digital motion CT but was, instead, a digital motion cerebral venogram. Can’t show that here because it was a movie of sorts and I have no still frame of it. However, this attached image was taken from a CT scan…or was it an MRI? (So many tests, y’know). If the copy and paste worked, you’ll see that the area circled in black shows the abnormal backwards slant of the styloid process bone and also the transverse process of C1. The area circled in red shows almost no gap between the two. The internal jugular vein is very dark and can’t really be seen above and below the pinch. The blue marks show, roughly, what will be excised during my next surgery on February 18th. (Marks are mine, not the doctor’s.) I obtained this screenshot from a two-minute iPhone video I made while Dr. Nakaji was explaining to me, in his office, what we were looking at on his computer screen. Maybe I’ll ask him if I can have the styloid so I can wear it on a chain or something. I can just imagine what people might say; “Oh! What’s THAT?” “Well, do you have a few days to hear all about it?”

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Thanks Kurt. What part of town are you in?

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That’s an impressively small gap between the styloid & C1! Will be good to get that sorted…
Re getting the styloid, doctors won’t often let you have them as they’re usually sent to histopathology to check the structure, would’ve been a good souvenir!

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In Clarkdale, near Jerome, Cottonwood, Sedona.

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Yes, I have read about tonsillectomy and ES. As a child I would experience very (very) painful earaches at night while trying to fall asleep, or they would awaken me in the night after falling asleep. So painful, I kept my parents and brothers awake with the screaming. Thinking back about it now, I wonder if there was a clue in all of it; possibly they were caused by lying back in bed, a positional thing. My adult ear issues are also positional in nature. I do also remember now that the left ear was particularly bad, as it is today, but with other symptoms. Once the tonsils were removed, maybe at age 10 or so, things got much better, but afterward I was prone to developing infections in the ears, and in cold Chicago winter weather, the occipital bones would ache and were very sensitive to touch. I’ll never know for certain if these old symptoms were the onset on ES, but it’s a fact that troubles with my ears have been with me for a lifetime.

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@Octoberkurt - I’m in your boat w/ a lifetime of ear troubles though I had my tonsils out at age 4 because I’d “go deaf” everytime I got a cold when I was young. The tonsillectomy along w/ a myringotomy stopped that problem, but I’ve had bilateral tinnitus ever since then. Never thought about it being an omen portending a future “interesting” health problem yet hear I am having had bilateral ES. :thinking:

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Wow…you’ve been through the ear-mill. If you don’t mind my question here, what does your tinnitus sound like? I’m very curious about the differences people have. I went to a group meeting for tinnitus sufferers in Dallas a few years ago and gave a little talk at the request of Tackling Tinnitus, an on-line course/study developed by a couple of very good people to help us live with it. While there, I learned that tinnitus tones are all over the map. One evening, when tinnitus was so bad, all I could do was to stare at the wall, hypnotized by the high-pitched symphony in my head. That same night, I found a tone generator app for iPad and took a half hour to duplicate my tones and then mixed them down into one 30-second stereo track. It helped immensely to do it. I have had various doctors listen to it and all of them were amazed that I could live with the loud, shrill noise, but all of them suggested the science just wasn’t “there yet” to effect a cure. I also played it for my wife and daughter and they both finally, fully understood. I really feel for those who have this noise. I have not yet come across another person who can amplify it with head, neck, scalp movement, as I can easily do. The worst aspect is that it bounces with every step I take, which keeps me from hiking the trails here in Arizona. But, now, with the vascular Eagle diagnosis we are onto something and my attitude is on the upswing. I wonder if there is a data base somewhere that has statistics on the various types of tinnitus and/or recordings that simulate each person’s noise.

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I had pulsatile tinnitus when I had bilateral IJV compression, mine was like the whooshing noise when you can listen to the baby’s heartbeat in the womb, irritating but not awful & it went after surgery. I get very high pitched sort of whistling now, & the sort of static noise you used to get from the TV went off air…It’s bearable, I feel for our many members whose tinnitus isn’t :hugs:

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You were in good hands. Both Metha and Nakaji are experts and thoughtful physicians. :canada:

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My tinnitus is like what @Jules said i.e. similar to the sound the old TVs used to make when shutting down, except mine has a high pitched hiss overtone above the medium pitched static sound.

Smart idea to simulate your tinnitus sound so you can share what you’re hearing with your family & doctors. I imagine that is very helpful for people to better understand your situation.

There are a number of YouTube videos, some put together by audiologists, where various types of tinnitus are given names & are played in the video. You could try watching some of those to see if you get any new information that way.

I’m really glad your diagnosis is giving you hope of potential tinnitus reduction & maybe even some hearing improvement. We for that along with you.

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