New here - my story (suspected CCI and possible eagle syndrome)

Symptoms and Treatments
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Hi everyone, I’m new to this and just wanted to share my story and ask for any help you might have for me.

So basically my symptoms kind of started about 7 or 8 years ago. I cracked my neck really quick one time and felt my jaw kind of pop but at the time I thought nothing of it. I ignored it as I didn’t really get much pain apart from an occasional popping in the jaw. Then when I started going to the gym at age 16 I’d notice my shoulder on left side would get kind of sore, but just put it down to muscle imbalances.

Fast forward a few years to around 3 years ago I would start getting pain in my jaw on left side all the way down neck and shoulder. This pain was now pretty much constantly. I went to physiotherapy but couldn’t find anything was helping. I’d also get numbness down left arm occasionally. Jaw constantly popping too.

About a year ago then I started feeling so fatigued all the time and would have such bad brain fog. I was eating badly and taking lots of nicotine pouches so I’d kind of put it down to this. Although the pain in my neck was probably worse than beforehand too. A couple of occasions I had a problem swallowing food but it only happened once or twice and I was having bad reflux. I assumed it was due to nic pouches again.

Then, in November (4 months ago), I started experiencing real bad shortness of breath. I was scared I was going to die, so went to A&E. They done ECG, bloods and chest x ray - all ok. I went another 2 times and the same tests were all ok. I was still getting real bad indigestion and found breathing hardest after or during eating.

Swallowing was then becoming progressively more difficult, to the point where now I can only swallow soft foods and liquids. I burp after every swallow too. This has progressively got worse, along with increased dizziness, brain fog and neck pain. Both my shoulders are now tight/popping, and I have started getting pains going up the back of my head too as well as the neck on left side.

Then, 2 weeks ago I started getting worse symptoms - my heart rate got a lot higher than normal. When standing up it hits like 120bpm and i feel really dizzy. I feel like I can’t do anything and I’m getting worse.

It kind of feels like everything in the left side of my neck is compressed. It looks swollen compared to the right. My jaw is aligned differently and when I move my head back it’s different on each side.

At this point I feel if I don’t get help quickly I might not be here much longer. My GP keeps telling me it’s just anxiety and has given me an SSRI which I feel like has just made things worse. I had an MRI of my cervical spine which showed no issues too.

If anyone has any advice it’d be much appreciated as I’m losing hope quickly. I’ve attached photos of my MRI, jaw and neck just to see if it’s relatable for anyone else. Thanks :slight_smile:

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If anyone knows how I can upload images let me know lol

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@benmcg23 - You probably couldn’t upload your imaging because you hadn’t made a post on the forum before. Our software is protective of our members & in order to try to prevent spamming, a new member has to post to the forum once before images can be added. Please try again by clicking on the underlined up arrow at the top of your text box where you type your message.

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Welcome to our forum @benmcg23! I’m sorry you have such awful symptoms but they are all symptoms we see w/ ES & in your case, potentially vascular ES.

The spinal accessory nerve is one of the cranial nerves negatively affected by ES. When it’s irritated it can cause pain in the area you mentioned above. The SCM muscle in the neck is the one affected by the nerve & the pain can radiate into the shoulder & even down the arm.

Brain fog is often a symptom of vascular compression (IJV) of the internal jugular vein in the neck which can be caused by it being squashed between the styloid & the C1 vertebra. We see it commonly on our forum. It can also be a problem w/ CCI which is also seen w/ some frequency w/ ES. We think that ES develops as a result of CCI due to the body trying to stabilize the neck which it detects is unstable. ES occurs w/o CCI as well. Choking on food/swallowing issues is also a common symptom of ES. The nicotine you’re ingesting could be making your symptoms worse because it’s a pretty powerful stimulant & can increase inflammation in your body which would increase symptoms.

The swallowing, burping, heart symptoms & digestive issues can all be caused by the vagus nerve being irritated, As mentioned, the brain fog, including dizziness, can have to do w/ vascular compression in your neck.

We’ve had other members notice facial asymmetry as an ES symptom. It’s more unusual but can happen due to muscle tension from nerve impingement.

The best advice I can give prior to you being properly diagnosed, is try sleeping w/ your head significantly elevated at night. Using a wedge pillow can be very helpful. Try icing your neck for 15 min. every couple of hours during the day w/ a soft cloth between your neck & the ice to protect your skin. If ice makes symptoms worse, try heat. Many of our members who have vascular symptoms have been Rxed a blood thinner once they were diagnosed. Taking that while they awaited surgery was very helpful in reducing symptoms for many of them. That’s to say, once you have a diagnosis, it’s something you should request.

We only have one doctor on our list for your country who’s doing ES surgery at the moment: •Professor Sherif Sultan, Galway Clinic, https://sherifsultan.ie
He has performed ES surgery & published a research paper. Also mentioned on the paper were Arielle Pierre, Yogesh Acharya & Niamh Hynes (Western Vascular Institute, Galway) so he’d be a good doctor to see to get a diagnosis.

Another member from your country has requested an appt. w/ Mr. Axon in England. He is very experienced w/ ES & the surgery for it.

I hope you can get diagnosed soon.

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I had to delete your MRI image because it has your personal info on the right side. If you can remove that it would be fine to repost it. The MRI image doesn’t show anything that’s helpful for me to suggest what’s going on. As @Jules likely already told you, you’ll need to get a CT scan with contrast of the area between skull base & hyoid bone. Request some 3D images to be included on the CD you should get w/ your imaging on it, or if it’s sent to you in soft copy. Being able to see a 3D image will also help you & us (if you post it) better understand what’s going on in your neck.

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Thanks so much Isaiah.
With regards to icing etc. is it likely this will help much given this has been progressing over so many years?

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Hi, & welcome!
I despair at doctors dismissing patients with an anxiety diagnosis, your neck looks so swollen, did he not look at that?
The sternocleidomastoid muscle (SCM), is often affected with ES and we have seen members whose muscle becomes enlarged, it looks like that could be what’s happened with you, here’s a link so you can have a look yourself:
Sternocleidomastoid muscle: Anatomy and functions | Kenhub
There have been quite a few discussions about it so if you use the search function for that hopefully it’ll come up with some info…
At a guess I wouldn’t think it would affect swallowing, so I think it’s worth looking into ES as a diagnosis- an MRI doesn’t show the styloid processes so I can’t say anything useful about yours, I’d suggest if you can, that you try to get a CT as that will show them best.
With NHS healthcare in Northern Ireland, would it be possible to see anyone in the UK, or is it possible to see someone in Ireland, like the Professor @Isaiah_40_31 mentioned?

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Icing should provide temporary relief. Nothing short of surgery will provide permanent relief from your symptoms.

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Thanks Jules.
Yeah I’d be able to get a consultation in the UK via NHS or privately as well as Ireland.
I’ve had the swelling for so long now on that side he just brushed it off. I got an ultrasound on left side of neck as well as the c spine mri I mentioned but they didn’t show anything like you’ve said.
With regards to the ct scan of the styloid, will that help show whether the swelling etc. on that side of my neck is causing any nerve compression as well? As @Isaiah_40_31 mentioned these issues. I had also been looking into an MRI of CCJ and cervical spine with flexion at medserna in Manchester to see if there were any issues with my upper cervical spine that could be contributing to these issues. Not sure if it’s worth getting or not.

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Ok that makes sense. Thanks again. Feels like a race against the clock now before damage is permanent (if it isn’t already) or worse.

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Sorry Isaiah just one more question, what do you mean when you say I need to request some 3D images? Also I’m not sure what the process would be for me - do I consult with the specialists you’ve mentioned first to try and get the CT scan or request this from my GP. I don’t like the idea of trying to go through my GP considering they’ve already put this down to anxiety. I have private health insurance with Aviva and they offer a digital GP service but I feel it’s a bit hard to say “I believe I have this, so I want this scan”. Sorry again if I’m waffling I’m just quite new to all this so I’m trying to understand what I can do as well as I can.

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@benmcg23 - If you don’t want to request the CT scan from your GP, can you get a referral to an ENT? An ENT skull based surgeon is the type of doctor who usually treats ES but some maxillofacial, neuro &/or vascular surgeons have also done ES surgeries. Also many dentists are aware of ES & end up diagnosing patients via a panoramic x-ray (CBCT scan), but the pano x-ray isn’t ideal for a real diagnosis as it can also hide the styloids & calcified stylohyoid ligaments aren’t visible. I suggested requesting 3D images w/ your scan results because CT scans are taking in very thin slices & looking at a series of slices only provides information to a person trained to read CT scans. For the lay person, a 3D scan is much more helpful in seeing what’s going on.

A CT scan is a fancy form of x-ray so it doesn’t show soft tissues except w/ contrast & then it’s usually veins/arteries being viewed. Nerves are only visible in a FIESTA/CISS MRI which is also known in some circles as a neurogram. I think there is a place in London where you can get one, but it’s difficult to get a referral from medical providers so most people w/ ES don’t go that route unless surgery hasn’t helped after a year or more as nerve recovery is very slow.

We’ve had members who’ve had symptoms for 10+ years & have had good recoveries after ES surgeries. Because you’re still young, there’s a good chance you’ll recover well from your symptoms once you discover the cause & are able to get it treated.

As you can see in these images below, which are CT slices, unless you’re trained to know what you’re looking at it’s hard to tell what’s what. The little white arrows are pointing at the styloids but from 1 CT slice it can’t be determined if the styloids are elongated.

In the following 3D image, the elongated styloids are obvious looking like daggers coming off the skull base:

I hope this helps you understand why I suggest requesting some 3D images when you have a CT scan w/ contrast.

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@benmcg23 havent been active on the forum for a while but have been reading and seen you are UK based. You may also want to look into thoracic outlet syndrome, neck pain, shoulder pain, jaw pain and numbness down your arm would also fit with compression of the brachial plexus. Your heart rate symptoms could either be orthostatic intolerance or POTS like autonomic issues, suggest you check your blood pressure upon standing, if it drops its orthostatic intolerance, if it doesnt its probably more like POTS.

just to reassure you i know its difficult having basically gone through a similar thing - https://gurnanipratik.wordpress.com/2023/12/26/10/ (if you want to read).

My symptoms calmed down significantly after some flare ups and while im in pain everyday, i dont get the autonomic issues very often.

Swelling on the front of your neck could also be thyroid related?

But before getting the MRI at Medserena i would recommend trying to push for a CT scan at a bare minimum - and if at some point you do decide to get the flexion/extenion MRI go to the one in London the machine they have is high res (stronger magnet)

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@Isaiah_40_31 yeah that makes sense. Hopefully I get the option of the 3D images as well then and if I do I’ll definitely ask for these.

I could probably get referred to an ENT specialist through the Aviva digital GP service as well. I’d been able to see an ENT privately a few months ago but this was to do with what I thought was a lump in my neck at the time rather than putting the pieces together with all the other issues. I can look into getting an appointment with an ENT skull based surgeon instead, probably one of those recommended on this page.

Thanks again. Especially for the reassurance as I’ve needed some the past few weeks.

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@LimeZest Hi, I’ve definitely been experiencing TOS symptoms as well. Arms feeling so heavy and getting tingling a lot. I’m actually seeing another orthopaedic doctor in a weeks time so I can discuss this with them to see if I can get a scan and any help with these symptoms at the very least.

With the swelling in the neck I don’t think it’s thyroid related as I’ve had ultrasounds and blood tests done which were all ok. The swelling is pretty much just on left side.

With the autonomic symptoms I’d just want to understand what’s causing them, whether it’s vagus nerve irritation/damage or something else, where this is happening and how/if I can get it fixed.

I’m glad you’ve had some relief anyway, hopefully the pain eases as well. Thanks!

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@benmcg23 Yeah so for the autonomic issues it could be vagus nerve irritation from the styloid, but the brachial plexus is connected to a lot of parasympathetic fibres, so severe compression of that can also cause this. Lots of others have also reported that direct compression of the vasculature (e.g. jugular vein, carotid artery, subclavian vein, subclavian artery) in the eagle syndrome/TOS areas can also cause POTS. Basically the flow sensors in the body which measure return flow to the heart go a bit haywire because of the compressions. Do you have any other symptoms of vagus nerve irritation, like gastointestinal problems? For me the big one i noticed with the dysautonomia was wild anxiety, but its not surprising this happens when there isnt enough blood getting to the brain and your body is trying to pump adrenaline to compensate.

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@LimeZest yeah I’m getting gastrointestinal problems (constant reflux and bloating) and also swallowing difficulties, which makes me worried the vagus irritation is high up and possibly CCI is the cause.

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@LimeZest - I was thinking about you just the other day & was going to check in. Thx for coming back to help @benmcg23 think through his symptoms & some possible causes. I’m glad your symptoms aren’t debilitating. I hope they continue stay at the “non-surgical” level going forward!

Please pop in whenever you can. Your knowledge of ES & other somewhat related comordities is very helpful here.

:blush:

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@benmcg23 CCI may not be the only cause, direct irritation of the vagus nerve from the styloid, or joint compression with C1 could also be the issue and those arent always caused by CCI. Really your best bet is to try to get a CT venogram, and explore TOS further. I have a feeling (just my own suspicion) that in some ways those conditions are kinda linked because they cause postural adaptations that may result in the other. E.g. TOS compensatory mechanism of rounded shoulders and forward head posture can shift C1 towards styloid. While eagles syndrome can cause trapezius, SCM pain etc which can shift head forward, round the thoracic spine and end up with TOS.

The reason why i say this is because im being investigated for TOS too, and had my ultrasound where you can see that the subclavian artery and vein get compressed with arm abduction. Similarly i have a side locked headache and weakness in the same arm.

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