Possible eagle syndrome

[jakef8]

Hi, I’m Jake I’m 25 and I’m new here. I have even having symptoms of eagle syndrome for about a year or so now. Everything started with neck pain, I was at work one time and I had a bad spell along with neck pain. It felt like I was stuck in this dissociation but also out of body as well. I went to the ER they checked for a cerebral spinal fluid leak VIA CT scan and found nothing, just said I had vertigo and sent me off. I then started attending welding school shortly after and it welding puts me in a lot of situations bending and holding my neck in odd positions. I had started getting seizure like symptoms, shakiness and mind going blank but still able to be aware. A doctor thought it might Be focal seizure but i did eventually get into a cervical chiropractor (which did do a cbct and xray I will post with this) the adjustments helped with the seizure like symptoms and I noticed my brain fog being better but my chiro did recently notice a long styloid and that the gap between my c1 and styloid is very small. I did go to a ENT for this and the whole time he would not even try to really consider eagle syndrome because it’s “too rare” and has only had a handful of cases during his time being a ENT. He even saw my imaging. I often get really bad neck pain especially in the front left suddenly with tons of head pressure but if I press on the area where my chiro pushed my c1 vertebrae back the other direction it feels better? I also notice laying on my left side (the side with the styloid) I will start to hear a squeezing liquid sound and I noticed when I hear the squeezing liquid sound I’m usually in for a bad spell. I also did go to get a carotid ultrasound and I was all clear but they did say I did have over a 20 difference in my left arm (side with styloid) vs my right which made them worried but they had no way to explain.

My symptoms:

1. Have to sleep sitting up
2. Vertigo when bending down and standing up
3. Instant nausea when turning my head certain ways
4. Keeping head down gives me a ton of my general symptoms
5. Hot flashes
6. Random numbness in areas of face
7. Hallucinations with the head pressure
8. Sudden choking feeling and coughing
9. Left ear becoming full of fluid and off and on infections
10. Random shoulder blade back pain and arm weakness
11. My voice will suddenly disappear it will sound like I had been yelling for a long time
12. Head aches
13. Toothaches
14. Nightmares
15. It has also been affecting my mood a lot I get very very depressed and anxious out of nowhere and I’ve noticed when I hear the liquid sounds in my neck I feel this way more
16. Sudden feeling of about to pass out
17. Sudden weak legs
18. Turning my head to the left for too long makes me light headed

There is a trillion symptoms but these are some. I’m hoping to see if anyone has any advice or has been through similar? Relief advice? And if any body see something in my scans?

Thanks!!

[Isaiah_40_31]

@jakef8 - When you post imaging, please make sure you cover your name so it’s not visible in the pictures. I did this for you on the ones you just posted.

Your symptoms definitely sound vascular & like a mix of both IJV & ICA/carotid with the symptoms you’ve listed. Unfortunately, it looks like your images were taken w/o contrast which means your internal jugular veins & carotid arteries aren’t visible. I also couldn’t see your hyoid bone which would be helpful as the carotids can be compressed or irritated by the greater horns of the hyoid, but the IJVs are more often compressed between the styloid & C1 though sometimes soft tissues in the neck can also be contributors.

Do you also have images of your right styloid?

Here are my annotations & some discussion about what I see:

Your left styloid is very long & looks to have an inward curve. Your C1 vertebra is quite a “differently shaped” than I’ve seen, & you have ponticulus posticus AKA arcuate foramen which can cause symptoms but doesn’t always. The left transverse process (TP) of C1 is very thick & oddly shaped. Though the distance between C1 & your styloid doesn’t look super tight, you’ll see in the next image that your left IJV is a flattened oval which means it is being compressed.

You’ve also lost the lordotic curve in your cervical spine which brings the styloid & hyoid bone closer to vascular tissues & nerves in your neck. The curve can be restored w/ gentle PT exercises but it takes much time & perseverance. Some of our members have tried working on that project prior to their styloidectomies but some prefer to wait until afterward. See the info in this post for help with this: List of my favourite resources on YouTube to learn anatomy

In this image you can see the flattened oval of the left IJV, however, the space between your right styloid & TP of C1 is so narrow that I can’t see the IJV there. It’s likely very flattened. In addition, you can see how much wider your right TP is than the left one which is likely why there is far less space for the IJV to squeeze between the styloid & C1 on the right.

The IJV & vagus nerve are side by side w/in the carotid sheath as they pass between the styloid & C1 so when the IJV is compressed, so is the vagus nerve. The vagus is the largest & most far reaching of our cranial nerves & affects many of the body’s functions. I suspect that some of your symptoms are also coming from your compromised vagus nerve.

The two closest doctors to you who can help you are Dr. Costantino in NY & Dr. Liu in NJ. Instead of wasting time & $ on doctors who aren’t being helpful, you can schedule a consult w/ one or both of these doctors. I believe both do telehealth initial consults so you wouldn’t need to travel to see them until you decide about surgery.

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS

•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ

[MGORNEAU]

@jakef8 quite the hook on the end of that styloid. I would disregard that ENT.

[Jules]

I agree with @Isaiah_40_31 & your chiro that there’s very little space between your styloids and the C1 process, so IJV compression is very likely, and you have symptoms of this. It’s so frustrating the ignorance of many ENTs , dismissing you like that!
There’s info about things which can help in this section:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It’s worth reading, there are some medications and supplements which might help with the head pressure, and a link to a discussion with input from members about things which helped them.
Sleeping propped up helped me, which you’re obviously doing, and nerve pain medication as I had tooth and jaw pain- that might help your shoulder & arm pain too.
I’m sorry that you’re suffering so much, especially being so young, and hope that you’re able to get to see one of the Vascular ES doctors mentioned.

[Deanna]

I’m sorry to hear you are having such intense symptoms and can’t get a proper diagnosis or medical intervention! - that’s why the is group is here, so, glad you found it! - that said, your symptoms and the description of your findings are very similar to my own. I, after over a decade of suffering with this stuff, was finally referred to a guy in Toronto who specialises in ES. As was mentioned, you need the CT scan with the contrast to see definitively, but I relate to all of your symptoms and I have been diagnosed with severe compression of my internal jugular veins due to elongated solid process and some irregularities with C1 & C2. Because I have RA and systemic inflammation, I also have significant plaque in my carotid arteries which contribute to symptoms, but may not be directly affected by the styloid. That part is still in investigation for me. But, bottom line is you seem to have Avery long, pointed, curved styloid which in your case sounds like it’s interfering with blood flow and drainage, and may be affecting nerves. I hope you can get connected is to the right medical professional who can get you on a path to relief!!! (I’m stuck in a loop here on Waterloo Ontario. Diagnosis mostly complete but action unavailable!) You should probably seek out an neuro ophthalmologist who could assess for intracranial hypertensive pressure which could give your docs the basis for treatment. It seems they usually want to know if it is causing pressure on your cranium. If so, they move more quickly on treatment, it seems!

[Jules]

At least there are quite a few more options for US members to get treatment than for you in Canada @Deanna , I feel for you , are you hoping to be able to get treatment in Canada or is travelling out of country an option for you?

[jakef8]

Thanks for all the information! I was having a hard time figuring out how to edit my post for the pictures so I just sent them in a reply to you. As well as pics of the right side.

Is there a chance that getting my Iordotic curve back will get rid of these symptoms? And what could be the reason behind the Ponticulus Posticus and the left part of my c1 being thicker?

I’m worried of this being quite serious due to feeling lots of mental side affects and feeling of passing out, so I figured that would most likely mean surgery soon. I know there is a surgery they do through the mouth internally as well as externally on the outside of the neck. I was looking into trying to get the one through the mouth since I heard that can be used with local anesthesia since I was looking to not having to go under.

Does my case seem like something I could just get the local anesthesia internal one? Or would it be too difficult? I believe its the intra oral surgery? Is there any well known surgeons to do that approach?

And what are all the average test done before surgery? I’ve always tried to avoid all dyes for scans due to me not usually reacting well to them. Would they be able to tell alone that I have jugular compression from like a trans cranial Doppler ultrasound? And that be enough? Or is it more extensive?

I will definitely look into those docs! Thank you

[jakef8]

[Jules]

Improving your lordotic curve can help with symptoms a bit, but I doubt it would be enough to alleviate them completely.
We don’t recommend intra-oral surgery as the surgeon can’t see the styloid processes as well, which makes a slightly higher risk of damaging nerves or blood vessels, and they can’t remove the styloid process as high, which then means you may not have symptoms resolve. As it looks like you could have IJV compression this makes it even more important to see a doctor experienced with vascular ES & who can remove the styloid as close to the skull base as safely possible.
A CT with contrast would be the best test to see what’s going on, timed to show the veins especially. The dye used for this would be iodine, do you react to this? Some members have had an ultrasound done of the IJVs, it can show compression, but it’s not as accurate as a CT with contrast and most of the VES doctors like to see the scans… The two that @Isaiah_40_31 mentions would be good to get a consultation with if you can!

[Isaiah_40_31]

@jakef8 -

@jakef8

what could be the reason behind the Ponticulus Posticus and the left part of my c1 being thicker?

These are genetic developmental anomalies you have & were not caused by anything you’ve done. It seems some people can go years asymptomatic with bony/spinal irregularities, but at some point as we age, & as we are active, get injured, have poor posture, etc., those irregularities begin to cause problems. I suspect that’s your situation.

@jakef8

I’m worried of this being quite serious due to feeling lots of mental side affects and feeling of passing out, so I figured that would most likely mean surgery soon.

These are common symptoms of IJV &/or ICA compression. Unfortunately, there are quite a number of people who have these symptoms & there aren’t a large number of doctors who do vascular decompression surgeries so you’ll likely need to wait a bit to get surgery. The key thing now is to get a couple of consults, if possible, & get the imaging done the doctors you see suggest so your diagnosis can be confirmed. The iodine contrast in a CTA or CTV is water soluble so passes out of your body via urine reasonably soon after the imaging is done. It’s MRI contrast that is more dangerous as it contains the heavy metal gadolinium which can be problematic for some people.

@jakef8

Does my case seem like something I could just get the local anesthesia internal one? Or would it be too difficult? I believe its the intra oral surgery? Is there any well known surgeons to do that approach?

As @Jules said, this is not the approach you want when vascular compression is a concern. She gave you good information & advice as to why that’s the case. C1 can’t be shaved via the intraoral surgical route in case that’s necessary to allow your IJV to open. In your case I suspect that will be necessary. Thus, Dr. Costantino or Dr. Lui will be your best options for a good surgical outcome.

I’ve annotated your right styloid. It’s quite thick at the skull base & curved inward so is also likely causing some trouble, at least with nerves. There’s a secondary little pointed bone outside of the styloid. I don’t know if it’s significant or not, & I have no idea what it is, but it’s worth asking about when you have a consult.