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Hello everyone, not the way I would’ve liked to meet all of you lol but here’s a quick backstory, I’m 24 years old, was training as an mma fighter (not sure if maybe trauma from neck or getting punched in jaw caused some calcification). First symptoms were a back spasm followed by a massive headache that wouldn’t let up(started oct.2024). Weeks straight with the headache, a few er visits with no answers. Started to massage my back and it started to head with the headaches at first, so I thought that it might’ve just been some tight muscles in the back.

Couple months later I started to develop some neurological symptoms, tingling/numbing of hands especially when I held them above my head. Got a cervical spine MRI without contrast and my neurologist said it looks normal other than a couple tiny disc protrusions in c4-c5 and c5-c6 which “doesn’t warrant the cause of my symptoms”. This made me think that I had TOS which is obviously scary. But my symptoms just kept getting worse, I had to take some time off of work and still am out as of right now. Went to a TOS doc and he said he doesn’t think I have that. Even went to a spine specialist to get flexion X-rays of my neck “ Minimal posterior subluxations on the extension view which normalize on the neutral and flexion views at the C3-C4, C4-C5, and C5-C6 levels”. When I had my follow up appointment with him he said it’s so small he doesn’t even see what the radiologist is talking about.

Came across this syndrome on Reddit and was directed to this forum, person I was talking to on Reddit had amor of the same symptoms as me. Felt under my ears and I definitely feel a lump there. I’ve had tinnitus for a while but I jotted it as work related stuff because I work as a welder and it’s very noisy wherever I work.

Symptoms as of right now are upper back tenderness/tightness, ears feeling full, dizziness and sensation of blood rushing to my head when I’m bending down, couple times my vision went almost black when I stood up too quickly and the feeling as if I was going to pass out. Noticed a lot of floaters and visual disturbances whenever I try to read (hard time focusing on words), arm fatigue, leg fatigue at times, brain fog, choking sensation under my jaw by my ears, tight scalene muscles, very anxious a lot of the time, twitching all over my body, thinking I have some muscle atrophy in my hands and forearms but it’s really hard to tell since ive been out of work for a couple months and I haven’t really done a whole lot, shoulder and scapula pain (sometimes worse when I carry something). I even had an episode of some bizzare Gi issue where I was constantly feeling bloated around this time last year, had no idea what it was and this was before any of my other symptoms started. Back of my neck hurts a lot, feeling as if I have a bobble head(constantly fighting to keep it upright) and as if my brain was sloshing around, couple last times I was at the gym I felt as if I couldn’t breathe, as if my neck and chest was being squeezed, scary but subsided a little bit after.

Any help would be greatly appreciated, I’d be happy to answer any other questions. Thank you so much.

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Hi & welcome!
If you’ve not seen the section in the Newbies Guide about common symptoms & possible explanations it’s worth a read, so here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I would’ve suggested looking into TOS given your arm symptoms, but that’s obviously been ruled out. The spinal accessory nerve is often affected with ES so that could be causing arm weakness & shoulder pain. Ear fullness & dizziness are often vascular symptoms, so it could be that your Internal Jugular veins are being compressed, as well as brain fog and fatigue. Choking sensations are the more common ES symptoms. Anxiety and GI issues can be from the vagus nerve being irritated, as well as sometimes breathing issues. The bobble head feeling is something which members who also have CCI describe, although it sounds as if you’ve had lots of imaging done on your neck, have they looked at instability at all?
So it sounds like it’s worth looking into ES, an MRI is not the best scan to show the styloids, they can sometimes be seen on x-rays, but the best is a CT, so if you’re able to get one done that would be good. Given that you possibly have vascular symptoms a CT with contrast would be even better, covering from the base of your skull to the hyoid bone.
Dr Peter Costantino would be a good doctor to see if the CT does show something :
4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS

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When I went to see a spine surgeon he ordered some flexion X-rays of my neck and that’s where the report said they saw some small slippage but when I had a follow up appointment with him he said that he doesn’t even really see what the radiologist was talking about. Although I didn’t have these symptoms months ago, just the headache really. My cervical spine mri did show inflammation within the left alar ligament, but he didn’t even mention that, felt kinda rushed by him. I do have cracking sounds with micromovements of my head and neck but that was something I never had before, just the neck pain. My neurologist ordered me a brain MRI with contrast this time (haven’t had it yet, in a couple weeks) but after she ordered it I brought up the possibility of ES and she said that it’s extremely rare, and that the MRI of the brain would look into that area. That’s when I told her that a CT scan would be better and she insisted that MRI is preferred for ligaments. I’m wondering if maybe the styloids are causing some instability issues because it seems that my symptoms just seem to be getting worse, never had the feeling of the head rushing, pulsating tinnitus, arm fatigue or any of that crap. When I had the mri of my neck she said that none of the finding warrant my symptoms, so it was back to square one after that.

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I have an appointment with a Vascular TOS doc this Thursday, I’ll definitely bring up my symptoms to him and see if he can order me that CT scan with contrast but I’m not sure if he would since it’s the neck and head area, idk where he would set his limitations. I would think the blood rushing feeling and all the other symptoms might alarm him and he would push for it but we’ll see. Plus I’m not sure if Dr. Constantino would take my insurance, if anything I might have to consult with Dr. Mohamed Khaled first to see what he thinks.

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I think it’s a great idea to ask the TOS doc for a referral for the CT. I’d just tell him you have symptoms you think may be caused by ES & need a diagnostic scan. I’d skip telling him about the blood rushing feeling if you think it might scare him off, but if he asks for more details, you can talk to him about the worst neurological symptoms & tinnitus (keep it to 3 or 4 symptoms not a huge list).

Yes ES is rare, but that sure doesn’t mean you don’t have it. As @Jules said, MRIs are not good for diagnosing ES because the soft tissues often overlay the styloids/hyoid bone, & the connecting stylohyoid ligaments so they aren’t able to be seen fully enough to diagnose ES. Even though your neuro doc said the area of your neck where the styloids are would be looked into via MRI, it would be wise to clarify with her whether or not ES & vascular compression could be diagnosed by the MRI if they are present.

Personally, I’d put off the brain MRI w/ contrast until after you’ve gotten a CT w/ contrast. This is for a couple of reasons: If you do have vascular ES, the CT should show that which could negate your need for an MRI + the contrast used for MRIs contains Gadolinium which is a heavy metal. Some people get long term problems from it. I had an MRV (w/ contrast) 3 years ago & had a terrible headache for a week afterward but thankfully haven’t had any longer term effects than that. The contrast used for CT scans is iodine based so if you’re not allergic to iodine, it shouldn’t bother you & it’s water-based so flushes out of your body more readily.

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Oh wow, had no idea about the contrast used for the mri, I’m definitely going to bring that up to my doc tomorrow, thank you. When I scheduled my mri they said that the contrast wouldn’t affect me at all. Plus I’m sure I’d be able to get a ct scan done a lot quicker considering the time difference needed for each test.

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Doctors pretty much all make the MRI contrast out to be benign. Here’s a post w/ the “worst case scenario” about Gadolinium. It’s best to be informed before getting any type of contrast injected into your body, however, sometimes it’s necessary to have scans with contrasts as there is no other good way to make a necessary diagnosis:

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Still kinda wondering if neck issues are causing ES symptoms or vice versa since my symptoms are kind of all over the place as well. Maybe 4 months ago I’ve started having PVC’s and before that I would randomly get heart palpitations. Have you came across anyone that’s had pain or a burning pain sensation in the back of the head/base of the skull? Some creaking and cracking whenever I move my head around. My biggest concern right now is the quick fatiguing in my arms and sometimes in my legs, also the headaches/dizziness obviously.

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I had heart & blood pressure issues w/ ES. Mine were more evident when doing a hard cardio workout as my BP would drop instead of elevating then my heart would race crazily, I’d get totally breathless & feel like I was going to pass out. I also had heart palpitations. Those symptoms stopped for the most part after my styloids were shortened.

I had horrible occipital pain at the back of my head at the base of my skull. It took a year or more after my surgeries for it to stop but it finally went away.

I seriously think your arm symptoms could be TOS related so I’m really glad you’re getting a second opinion on that. Since the veins that get squashed w/ TOS are the lower part of the jugulars, it seems like it’s not uncommon for people w/ TOS to have other venous compression issues i.e. compression up in the neck or something like Nutcracker Syndrome w/ there is compression of the left renal vein which causes kidney/back pain. (Not suggesting you have that, just using it as an example).

Creaking & cracking in the neck isn’t too unusual w/ ES, but can coincide w/ cervical instability. I know you’ve said you’ve been tested, but did anyone evaluate you w/ an upright MRI & give you the following measurements which are used to evaluate instability: CXA Angle, Grabbs Oaks Score, & McReas Line.

Here’s a discussion about this with images from @Disabled_Inventor.

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I haven’t had any other testing for Cervical instability other than the flexion X-rays I’ve gotten which showed nothing on the upper part of my neck, only some small slippage on the middle part of my neck. My first mri report only showed the tiny disc protrusions but then another radiologist looked at it and spotted some fluid within the left alar ligament, suggestive of a ligament strain. But the neurosurgeon I saw didn’t really say anything about that and just gave me the X-rays to test for instability and said it don’t have anything to worry about and the slippage seen on the X-rays are very tiny

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@Dancingpineapple - It sounds like you’ve seen some doctors who at least know what more serious cervical instability looks like & you don’t have that which is good news. Perhaps what’s been seen in your imaging can heal with some PT or will naturally recover over time. If you do end up w/ an ES diagnosis, that could also contribute to your neck symptoms.

You’ve asked a couple of times abt whether neck instability causes ES or vice versa (sorry for not answering previously), & the answer is, we don’t know for sure. I suspect it can go either way, with a slight bias toward instability causing styloids to elongate/s-h ligaments to calcify in order to create greater cervical stability.

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