# I'm desperate- does this sound like Eagles Syndrome? **URL:** \ **Category:** General\ **Tags:** symptoms\ **Created:** [September 20, 2026, 9:26pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430 "2026-09-20T21:26:35Z")\ **Posts on this page:** 18\ **Page:** 1
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 20, 2026, 9:26pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/1 "2026-09-20T21:26:35Z")
Just looking for advice I suffer severely with auditory symptoms I hear my heartbeat nonstop left ear My ear feels clogged off and on all day with severe pressure Ear pops a lot. If i turn my neck or any little movement, my middle ear can pop. It doesn’t relieve pressure or symptoms Ear reacts and spasms to certain voices and sounds Ear rumbles, flutters and tapping in both ears Ear crackles when swallowing Intermittent autophony (hear my breathing) when lifting something heavy or with exertion Can hear neck tendons pop loudly in ear Fast Muscle twitching around ears and on both sides of head. Can feel them moving against my glasses and against my pillow at night and cannot sleep. I’ve had ct temporal bone, brain mri, mra, mrv, full spine mri Hearing and ear exams all normal ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [September 20, 2026, 9:33pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/2 "2026-09-20T21:33:57Z")
It sounds to me like you may have Semicircular Canal Dehiscence Syndrome (SCDS) which is a thinning of one of the bones in the inner ear that allows you to hear sounds inside your head. Here’s a video done by one of the most experienced SCDS surgeons in the US discussing the syndrome: [![](https://img.youtube.com/vi/zLxt8otZyQ8/maxresdefault.jpg "Superior Semicircular Canal Dehiscence | Quinton Gopen, MD | UCLAMDChat") ](https://www.youtube.com/watch?v=zLxt8otZyQ8) Did your CT of the temporal bone show styloid elongation or was that even looked for? The gold standard CT for diagnosing ES is a CT w/ contrast of the area between skull base (temporal bone) & the hyoid bone (under your chin). If your temporal bone CT doesn’t show much below the temporal bone, see if you can get the CT I just recommended. ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 20, 2026, 10:21pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/3 "2026-09-20T22:21:27Z")
Hi! My ent said he checked for Semicircular dehiscence with the ct temporal bone and he said he saw no signs of it and the radiologist didn’t either. My ct temporal bone was read normal. ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [September 21, 2026, 1:04am UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/4 "2026-09-21T01:04:25Z")
Many of our members have CT imaging that isn’t correctly read i.e. styloids will be called “normal” when they’re hugely long. Vascular compression will be severe & radiologists call it normal, etc. It’s always worth getting a second opinion. Can you get the additional CT scan I suggested? ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 21, 2026, 1:21am UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/5 "2026-09-21T01:21:51Z")
Hi, yes i should be able to! The confusing part is that it feels like my eustachian tube is dysfunctional with all the pressure, middle ear popping, clogging, ear muscle spasms along with the constant pulsatile tinnitus but the ent says they look perfect. If it were eagles would it present this way? Thank you ---
**Author:** ![lsheep](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/lsheep/32/14121_2.png) [@lsheep](https://forum.livingwitheagle.org/u/lsheep)\ **Post date:** [September 21, 2026, 1:43am UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/6 "2026-09-21T01:43:02Z")
Hey @jessicah, I currently experience all of those symptoms as well, except for the autophony. My right has the pain, crackling, tinnitus etc and my left has been doing the weird muscle twitches around the ear for about four months. I have elongated styloids on both sides & got (finally) diagnosed with Eagle in January. Message me if you ever want to vent… I am so sorry you are experiencing all these issues with your ear(s). There is so much kindness and compassion on this forum and I hope we can be encouragement for you. 💛 ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [September 21, 2026, 3:53pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/7 "2026-09-21T15:53:15Z")
With Vascular ES if there’s Internal Jugular Vein compression you can get fullness/ pressure/ clogged feelings in the ears, and also pulsatile tinnitus. Head and ear pressure can be caused by this too, so a CT with contrast, timed to show the arteries but especially the veins would be helpful. Have you got any copies of the CT you had before? If so you could upload it & we could take a quick look? We’re not doctors on here but as @Isaiah_40_31 says, often the styloids aren’t commented on when people have imaging done! ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [September 21, 2026, 5:50pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/9 "2026-09-21T17:50:53Z")
Images like this would be good: ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/f/f5b632817243dfcc6af5a1ecce0810638dcb3c59.jpeg) ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/b/bd5d1333a7501739b1a34c634cd16df31485bc1b.jpeg) These are with contrast, yours wouldn’t show the blood vessels but these angles are helpful… ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 2:03pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/10 "2026-09-23T14:03:11Z")
How do i upload the images. It states i cant do that here. ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 2:06pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/11 "2026-09-23T14:06:52Z")
Hi! Can you send me a message. I dont know how to send one since I’m unfamiliar with this app. Sorry ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 2:08pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/12 "2026-09-23T14:08:43Z")
Can you message me? I’m unfamiliar with this app so idk how to ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 2:38pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/13 "2026-09-23T14:38:05Z")
![Screenshot_20260923_085001_Chrome](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/b/b52891c517c28875d32631cca72d898214b26844.jpeg) ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 2:39pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/14 "2026-09-23T14:39:10Z")
![Screenshot_20260923_085146_Chrome](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/2/289b36a07340cd38462a98bec0fc039bf0d67f3b.jpeg) ![Screenshot_20260923_085001_Chrome](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/b/b52891c517c28875d32631cca72d898214b26844.jpeg) ![Screenshot_20260923_085011_Chrome](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/c/cc2137ffce9c3f6ec8cd4a35c1834ef4880f748c.jpeg) ![Screenshot_20260923_085125_Chrome](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/1/13993131b5d0816c36eb1a8f2e1a9c448a6a7201.jpeg) ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 3:20pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/15 "2026-09-23T15:20:53Z")
![Screenshot_20260923_101938_Chrome](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/d/de48776763b22753f5ef53614a904bf858dc1797.jpeg) ---
**Author:** ![anon30378544](https://avatars.discourse-cdn.com/v4/letter/a/779978/32.png) [@anon30378544](https://forum.livingwitheagle.org/u/anon30378544)\ **Post date:** [September 23, 2026, 4:43pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/16 "2026-09-23T16:43:31Z")
You have styloids on both sides. Right IJV compressed 50-60% , left IJV compressed 70-80%. This is a rough estimate. Since these are CT scans without contrast. And we also need all the DICOM images. ---
**Author:** ![lsheep](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/lsheep/32/14121_2.png) [@lsheep](https://forum.livingwitheagle.org/u/lsheep)\ **Post date:** [September 23, 2026, 4:55pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/18 "2026-09-23T16:55:53Z")
Sent you a message! Also the link below has a good tutorial on how to make your own 3D images from your scans. > [@RadiANT DICOM Viewer tutorial](https://forum.livingwitheagle.org/t/radiant-dicom-viewer-tutorial/12613): > > I came across this RadiANT DICOM Viewer tutorial that in just eight minutes gives you quite a good overview how to use this viewer, including rendering 3D, reconstructing multiplanar views, using measurement tools and much more. [[How to use RADIANT Dicom viewer? I Radiology Basics I Dr Anuj Aggarwal] ](https://www.youtube.com/watch?v=UOVzHRozKgs) I’d dare to say that for a typical user, the RadiANT Viewer is vastly superior and easier to use than Slicer 3D. The only real drawback that it is a paid tool, however, it gives a tri… ---
**Author:** ![jessicah](https://avatars.discourse-cdn.com/v4/letter/j/e19b73/32.png) [@jessicah](https://forum.livingwitheagle.org/u/jessicah)\ **Post date:** [September 23, 2026, 7:13pm UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/19 "2026-09-23T19:13:48Z")
Typically how compressed are they when people have a diagnosis of eagles syndrome? ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [September 24, 2026, 1:52am UTC](https://forum.livingwitheagle.org/t/im-desperate-does-this-sound-like-eagles-syndrome/24430/20 "2026-09-24T01:52:31Z")
IJV compression can be minor (40-50%) & still cause symptoms. Some people have more significant compression (75-80%) & don’t have bad symptoms so the degree of compression that causes symptoms is inconsistent. There is no level of IJV compression that diagnoses ES. Eagle Syndrome is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of 1 & 2. It’s not just styloid length but also the thickness, how curved they are & the angle they’re growing that can cause symptoms. Unfortunately, the only “cure” for ES is surgical removal of the elongated styloid(s) &/or calcified stylohyoid ligaments. A CT scan of the area between skull base & hyoid bone is the gold standard for diagnosing ES. If vascular symptoms are suspected then a CT scan w/ contrast is best.