My Weird Symptoms

Symptoms and Treatments
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I was so relieved to find this group!
Sorry this is so long - I admit to just wanting to get it out of my head.

I found out about ES due to worsening vertigo - it started about 15 years ago.
It’s been getting worse exponentially until, after an intense project at work where I was at my computer 14-18 hours most days for 3 months, it got so bad I couldn’t work anymore and went on short term leave.

In addition to the vertigo, I’ve had a problem with the left side of my neck for about 25 years. If I put my neck in the wrong position, I sort of black out - I get what feels like an electric zap, black out, and come to shaking and crying. This only happened a few times before I figured out not to put my neck in that position (basically if I lay on my left side, it can happen). I had my tonsils out when I was about 5.
Additionally:

  • Pain on left side of neck
  • Severe pain behind my jaw in front of my ear
  • pain under my chin on the left
  • Pain in front of left shoulder (pec minor area)
  • Trouble swallowing if I’m laying on my back
  • Swallowing increases with neck discomfort
  • Pitch of my voice lowers if I lay on my back, and as my muscles relax
  • Trouble yawning - I just can’t anymore
  • Drooping of left eye lid that improves with nervous system regulation
  • Feeling of Fluid in left ear
  • Feeling of fullness in left ear
  • Vertigo
  • Headaches
  • Symptoms triggered by stress, certain neck movements and shoulder movements
  • Vagus nerve stimulation improves symptoms
  • Nausea
  • Symptoms increase when left side of neck is compressed
  • Balance issues
  • Eye tracking issues
  • Vision problems - my eyes are no longer consistent
  • Bruise very easily and the bruises last a long time.
  • PVCs
  • Random increase in pulse rate
  • Lately, walking long enough to run errands or have a normal day brings on an ice pick stabbing in the back of my neck, followed by SCM spasm, pain in my ear, tingling around the left side of my head, my left eyelid will twitch, and then vertigo
  • A massage to relax my shoulder and neck muscles will make my left arm tingle and then my left fingers will go numb (pinkie and left ring finger, although my palm will tingle as well) and then of course everything tightens up a few hours later and I get vertigo
  • I wake up every hour or so at night for no apparent reason
  • I think I’ve lost half my IQ. I can’t focus at all and it gets worse and worse every day.

Here are my official diagnoses:
• Vertigo
• ADD (attention deficit disorder)
• Insomnia, unspecified
• History of PCOS
• Rotator cuff tendonitis, right
• Labile hypertension
• Mixed hyperlipidemia
• Nystagmus
• Cerebrovascular disease
• Neck muscle spasm
• Hypomagnesemia
• Hypokalemia
• Generalized hyperreflexia
• Vertebrobasilar dolichoectasia
• Vertebrobasilar migraine without cephalgia: probable (Chronic)
• Vertebrobasilar insufficiency: kinking in specific position
• Raynaud’s phenomenon
• Anxiety
• Opsoclonus saccades

I had some imaging done, here are the results:

There is mild reversal of the upper cervical lordotic curvature. Inflammatory endplate change at C3-4. No loss of vertebral body height. The craniocervical junction is normal. No abnormal T2 signal within the cervical cord. There is dolichoectasia of the left vertebral artery flow void at the C2-3 level.
CONCLUSION:

  1. Ventral cord flattening and mild central spinal canal stenosis at C4-5 and C5-6.
  2. Multilevel foraminal stenosis which is moderate on the right at C6-7 and on the left at C5-6. Mild to moderate bilaterally at C4-5 and on the left at C6-7.
  3. Inflammatory endplate change at C3-4 which may represent a cause of axial pain.
  4. Dolichoectasia of the left vertebral artery at the C2-3 level.

Posterior circulation: The left vertebral artery is dominant. There is dolichoectasia of the left vertebral artery at the C2-3 level. Diminutive right vertebral artery which tapers distal to the posterior inferior cerebellar artery. There is tortuosity at the vertebrobasilar junction. No focal stenosis of the basilar artery. There is a common origin of the superior cerebellar and posterior cerebral arteries. No focal stenosis.

Anterior circulation: No focal stenosis of the internal carotid arteries. There is a hairpin loop of the right internal carotid artery at the C2 level with dolichoectasia and close proximity of the styloid process. There is a hairpin loop of the left internal carotid artery at the C2 level with close proximity of the left styloid process.

Hypoplastic left A1 segment. No focal stenosis of the middle cerebral or anterior cerebral arteries.

CONCLUSION :

  1. Hairpin loop of the right internal carotid artery with dolichoectasia. Hairpin loop of the left internal carotid artery. The styloid processes are elongated and in close proximity with the internal carotid artery loops. Correlate clinically for Eagle syndrome.
  2. Dolichoectasia of the left vertebral artery.

3D Imaging -
CONCLUSION:

  1. Hairpin loop and dolichoectasia of the right internal carotid artery. Hairpin loop of the left internal carotid artery. Elongated styloid processes are in close proximity to the internal carotid artery bilaterally. Correlate clinically for Eagle syndrome.
  2. Dolichoectasia of the upper cervical left vertebral artery.
  3. No focal stenosis of the common or internal carotid arteries

And this is how I got to ES. The radiologist was supposed to do a different kind of test, but didn’t seem to understand what was being asked.

I don’t know what any of that means. I’m scared, I’ve been googling like crazy when my eyes can focus. No one has reviewed my images with me or explained anything more than that I have some weird anatomy.

How much of the above is linked to ES?
When I look at the 3D images, it looks like surgery might be kinda dangerous due to the weird loops I have.

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We’re not doctors on here, so some of your diagnoses & report comments are above me I’m afraid, but it certainly sounds as if quite a few of your symptoms could be due to vascular ES…
Blacking out when your head is in a certain position is quite a common vascular ES symptom, as is vertigo, & headaches. Fullness feeling in your ear can be a vascular ES symptom too, or possibly one of the nerves to the ear being irritated, although it can be more with jugular compression, & that can affect the optic nerve too, as well as brain fog. Swallowing discomfort & issues are a common symptom, voice changes have been noted by some (& there’s a link in the Newbies Guide Section to an article about an ES patient with this). After surgery the facial nerve can be stretched & drooping eyelid can be caused, so maybe this is caused by the styloid irritating that nerve? The accessory nerve can also be affected so that can cause arm weakness & shoulder pain, but given you have other neck issues it could be hard to say. If the vagus nerve is compressed that can cause heart issues, changes in pulse rate (although again these can be caused by pressure on the carotid sinus with vascular ES), plus digestion issues, anxiety…
There’s more details & links to info, discussions etc in the Newbies Guide Section here:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Isaiah40_31 has also posted links to informative clips on YouTube:
(16) 2-Minute Neuroscience: Trigeminal Nerve (Cranial Nerve V) - YouTube
Many of the cranial nerves are affected by ES so worth a look.
I think given that on the report you have other vascular issues, it would be advisable to see an experienced vascular surgeon, it does sound like there’s quite a bit going on with your neck as well as ES. I know with jugular compression from ES, other veins can take over & swell, but not sure if this is possible with carotid compression, it’s perhaps something to ask about.
As for whether surgery would be dangerous, all surgeries carry a risk, equally though leaving the styloid processes in can be a risk, although this is very rare. A good vascular surgeon would be able to explain more about this to you. Dr Omlie has done some successful surgeries, I guess you could start there & see how much knowledge he has about vascular ES, & if he can give you any answers about your strange anatomy?!

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Thanks!
I guess I did go kind of overboard in the detail.
I am in Dr. Omelie’s office on Monday, I’m hoping someone will review the images with me and explain things. I’ve been watching youtube videos most of the day since I’m having difficulty focusing to read.
Very frustrating, since reading is how I normally learn things, and is also one of my favorite past-times!
I’ll post a pic of the left styloid for the really geeky people out there (like me) at some point, because the blood vessels practically loop around it. I’m guessing that may be how I got in so quickly to the local ES person.
Thanks for everyone’s patience!

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We’re always glad for ALL the details @tokenegret, and especially 3D images of styloids. :wink:

We are each uniquely designed, & some of us are “fancier” in some spots than others which can give doctors a bigger challenge. That said, seeing an experienced ES surgeon, such as Dr. Omlie, gives you a much better chance of a good surgical outcome than simply going to the first doctor you see who claims to know about ES. I’m so glad you have an appt w/ Dr. O soon.

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(not a doctor here, just an opinion)
Hypokalemia… As far as I know, Potassium is important for muscles’ ability to contract/relax. Might be causing some of the tension/pain issues, and especially if the muscles pulling down the head can’t relax, it might be the reason of loss of cervical lordosis… Military neck’s role in exagerrating Eagle’s symptoms is something I still am trying to figure out, as it seems so many people who have symptomatic elongated styloids also have military neck/loss/reversal of cervical lordosis…
:thinking:

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I am curious … What is military neck and how does it relate to eagles syndrome?

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Military neck is where the neck loses it’s natural curve, making it straighter & tilt forwards. There’s no known link with ES, but @vdm has noticed it on quite a few members’ CT scans, & it looks like there could be a link- maybe it shifts the structures in the neck so the styloids are brought more into contact with the nerves or blood vessels.

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I couldn’t have summarized it better than @Jules did.
Obviously, correlation is not the same as causation, but when you see a pattern, it makes you think of possible direct or indirect links.
For example, I noticed that due to the weak back muscles there might be difficult to properly retract the head back, pull the shoulders backwards, “bend” the neck into the C curve and hold it there. Perhaps the elongated styloids develop to become like a protective mechanism to prevent the head from “dropping off” the spine, if that’s possible due to weak neck ligaments/back muscles or any other reasons. As that would literally compress the spinal cord.
:man_shrugging:

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Tokenegret,
I am grateful for your detailed post! I’m new to this group and have been reading thru posts and watching the suggested YouTube 2-minute neuroscience videos that @Isaiah_40_31 has mentioned. Your post is one more validation that my symptoms are real and that I need to stay vigilant to get a confirmation of a suspected diagnosis of ES as noted by my periodontist.

Thank you and I hope that you get some helpful answers!

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An update - had an angiogram and that was negative but they only looked at the arteries.

Have spent over a year now attempting to get a diagnoses of anything at all.

My Primary Care Provider has been incredibly patient and an amazing advocate. We thought we had narrowed it down to vTOS (venous thoracic outlet syndrome) and my Ophthalmologist was pretty enthusiastic about that dx because she said it would explain the double vision and fluctuating vision changes I’m having.

Alas, after renewing leave from work and waiting a month for the right machine, then waiting a week for a doc to get back from vacation then waiting 2 weeks to get in to see the surgeon, they were extremely dismissive.

When I read their report I noticed that it may be due to the fact that they reported symptoms I had not, and left off the main symptoms I had listed. Not sure what my next steps would be, the surgeon is suggesting more imaging to see if I have venous Eagle’s.

My treatment at this surgeon’s office was so dismissive, and then to record symptoms I do not have to fit with their preconceived ideas - they didn’t even have the right images. They were extremely ill prepared.

If we are not allowed to mention negative experiences with doctors publicly then I need to DM @Jules with the name because you may want to either remove or caution people about someone on the list. I had the similar experiences with 2 doctors at the same practice.

I’m not sure what my next steps are going to be. I was suicidal after the appointment yesterday, but I planned for it and had a friend scheduled to pick me up. It’s a good thing because I had a panic attack at the end of my visit and the doctor and their nurse got annoyed and left me sitting in the exam room. I don’t remember much about leaving the exam room or getting to the lobby of the hospital, but I do know all I heard from these “medical professionals” were expressions of irritation and a question asked by the nurse as she backed out of the room, “Do you have a therapist?”

They just left me sitting in the exam room, after I started sobbing and letting my inner monologue accidentally out - “I had planned to kill myself if this happened, now it has, what do I do? I can’t go through more tests, and what do I do while I’m waiting to get the tests?” That REALLY annoyed them. It was pretty obviously a panic attack, and should have been obvious I wasn’t even talking to them, I was panicking.

A kind pat on the arm, a reference to how amazing my PCP is and how he’s stuck with me - really, would have gone a long way.

It occurs to me that mentioning suicide probably makes them feel like the patient is trying to hold some “sword of Damocles” over them. You would really think that as professionals, specializing in rare and odd diseases, a lot of us are suicidal by the time we get to them. They should have a protocol to follow that doesn’t do more damage.

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I’m so sorry that you were dismissed like that, and not taken seriously at all, so frustrating & disheartening…I do agree that they should have a proper protocol in place for patients who are devastated in their clinics. I hope that your friend was supportive and that you have others to talk to, if you need to contact anyone when you’re feeling low there’s links here:
Crisis Help Line - Support - Living with Eagle
I am so pleased that you do have a supportive PCP, & hope that you can work out next steps between you…I’ll send you a PM about the doctors.
Sending you a hug & thinking of you :hugs:

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@tokenegret,

With your visual challenges & vertigo, it does seem like you might have IJV compression which you will need further testing to determine. The angiogram is obviously not helpful for that. There have been a lot of discussions on our forum about vascular ES over the last several months & also some new links to research papers on that topic (the Research Papers link is in the General category on the home page.

I don’t know if you’ve read these two posts which Jules wrote, but if not, they contain good information that will be helpful for you:

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Here are some fun pics from about a year ago. I added an arrow to show the styloid process.

styloids_1
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and from the side:

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Those are some nasty styloids, @tokenegret. I am so, so sorry you’re having trouble getting a solid diagnosis. You clearly have ES. Have you made any progress in getting an appt w/ another doctor so you can get moving forward w/ taking care of this?

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I just got the report on my CTV - the images are from a CTA. It appears my jugular is being compressed in 3 places.
Right now I’m scheduled for a follow up with Dr. Omlie on May 5th.
If he doesn’t think he can help me, Mayo will be the next step.

Study Result

Impression

Impression:

  1. Moderate to severe narrowing of the left internal jugular vein
    between the styloid process and C1 in neutral position that slightly
    improves with head turning to the left. The left internal jugular vein
    is also narrowed by the posterior belly of the digastric muscle and
    also in the mid neck near the carotid bifurcation.
  2. Mild narrowing of the right internal jugular vein by the posterior
    belly of the digastric muscle with head turned to the left.
  3. Previously identified left V2 segment vertebral artery
    pseudoaneurysm is not well evaluated on this venogram.”
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I’m sorry you’ve got vascular ES but am glad it’s seen clearly so your diagnosis is accurate.

I hope your next appt w/ Dr. Omlie goes better than the last one. Hopefully the previous appt was a wake-up call for him to be more prepared next time.

I recommend that you don’t waste your time or money going to Mayo as our members have pretty universally been declined help by Mayo clinics throughout the US. The doctors don’t seem to know anything about ES. You would do better to try another doctor on our list, but make sure whomever you choose is familiar w/ vascular ES & how to best deal with it.

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@tokenegret isn’t that a clot in your L Internal carotid artery, at the level C1/C2?..

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No clots in the arteries - unless a pseudo aneurysm is considered a clot. Below is report from an angiogram:
“Bilateral IR carotid angiogram due to dizziness. No carotid disease appreciated. Dominant left vertebral artery which very tortuous especially at C2 level with a wide base pseudoaneurysm that may have been related to a healed focal dissection with calcification. Elongated styloid processes bilaterally. Both distal cervical carotid arteries have hairpin loops.”
My arteries are abnormal but technically not the cause of my symptoms. I’m also not getting much blood flow at all from the right side, from what I’ve been told, but the left side is compensating.

All this time, the folks in the forum have been telling me to ask about venous Eagle’s, and I’m so cognitively impaired I couldn’t figure out that all the imaging and testing had been solely focused on my arteries- I just wasn’t making the connection.

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That’s too bad about Mayo- I’m in Minnesota, and we tend to think of them as the gold standard for everything, as well as a last resort. :frowning:

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Vertebral artery (the one that goes within the vertebrae bodies, through the transverse processes) - yes, the left is dominating. But I had the internal carotid arteries in mind. The R one seems like it has either a clot or some obstruction/impingement, and practically exactly at the place where the tip of the R styloid process would hit it if you turned the head left. Marked it on the pic.
Have you had MRI to rule out stroke?

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Upd: fixed L/R
Upd2: what was I thinking when calling the narrowing an aneurysm…

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