Undiagnosed neck pain

I have really severe, constant pain over my left carotid artery near the bifurcation for at least three months or so. The pulse itself is more prominent on the left side. It has been so bad, I can’t cope. Felt like my life was over since doctors can’t find anything. Blood work, mri has turned up nothing. Thankfully, the pain has in the past two days become slightly more bearable. I also get ear pain, the back left of my tongue, my throat, my left side of face, swallowing problems, clicking when swallowing, migraines, heavy left eye lid and pain, unable to turn neck left right or look up, pulsatile tinnitus in left ear,vertigo, motion sickness. Worst pain of my life easily is when I was on a plane. It set off the pain, ear and neck, like someone had inflated a balloon in my nerves. It all seemed to start when I stupidly checked my pulse due to health anxiety quite often, so that leads me to believe it cannot be eagle syndrome, but I thought I would try this forum and see. I don’t know where to go next.
Thanks for listening!

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Welcome to the flock. Sorry to hear about your pain, it does sound like many of the symptoms many of us have / had. Many of us have had to go to multiple doctors for many tests prior to getting diagnosed. Have you had a head neck CT, that is the test that shows the styloid process?

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Hi, I’m sorry you’re having so much pain. All that sounds like my symptoms. I just got a CT and I do not have eagles syndrome. It turns out that hypoxia causes same symptoms. Hypoxia from anxiety. Anxiety from aspergers or TBI. I had a “minor” diving accident a few years ago. I hope that helps some.

Hey. I had an ultrasound at the very beginning and an mri, that’s all. I will ask my doctor for a ct, thanks. Does that look at blood vessels as well as the bone?

Thanks. I feel like there is hypoxia. The pain recently has reduced but it is still bad but now I’m noticing a throbbing of my artery when my heartrate increases. often I will feel light-headed, have a dull headache and feel just strangled kind of, it really feels like there’s not enough blood getting to my brain. I don’t get it all the time but I have it now. Looking at the my screen, the vision around is “off”, and when I look from one place to another I feel slightly dizzy, like I’m drunk. I don’t think anxiety accounts for this. It’s scary!

Okay. Yes, the CT can see bone, soft tissue, and blood vessels. Massage (shoulder, back- not neck) helps loosen everything, so I can breathe better. Hoping to get hyperbaric oxygen for chronic inflammation (dysphasia/dysphonia). Scheduled for balloon sinuplasty, too. We’ll see. CT is a good starting point for you to rule out eagles or not.

Sorry I can’t answer your blood vessel question since I’m not a doctor but you could Google that info probably

A CT is the best scan to see the styloid processes as it shows the bones best, and if you suspect vascular ES (the symptoms do sound like it could be) then you’ll need a CT with contrast. For that they put in a dye and then look at all the blood vessels in the neck.
I had bilateral ES, with the jugular veins being compressed both sides, and some of my symptoms sound similar to yours- I had a constant wobbly, off-balance feeling, and some scary dizzy, feeling like I was falling spells. I had a lot of painful pressure in my ears, pulsatile tinnitus, pressure in my head, I could feel the pulse throbbing all the time in my neck, brain fog, like you say, similar to being a bit drunk all the time…These can be symptoms of Intracranial Hypertension, because the blood wasn’t able to flow down from the head as it should, so increases the pressure inside the head. This has pretty much gone now I’ve had both sides done, but the left side vein hasn’t sprung completely back, so I get the occasional feelings again for a few days- like when I flew recently, and when it’s been hot.
So if you’re able to get a CT with contrast done, it would show what’s going on, if anything is. There’s lots of info about the different scans in the Newbies Guide section, and info about symptoms as well. We usually suggest that if people are having problems getting doctors to take their symptoms seriously, then print off some of the relevant info (there’s info about research papers in the section too, where doctors mention these sort of symptoms with cases of vascular ES) and take it with you, as a lot of doctors aren’t very familiar with ES.
I’m not sure if your GP would be able to request a CT with contrast, or whether you’d have to get a referral to a consultant to get that. If so either an ENT, otolaryngologist/ skull base surgeon, neurovascular surgeon, head and neck specialist could help. There’s a doctors list with some doctors members have found are familiar with ES. Mr Axon at Addenbrooks is not that close to you, but I think he is the most experienced doctor in this in the UK. Not sure what other doctors are on the list for UK, there might be some nearer.
Hope this helps!

Thanks a lot for the help. I will take it all on board. I’ve been having a weakness on my right leg and arm. Scared, and upset that this won’t be seen to. Thanks for for taking the time to help.

That must be stressful, hope that goes well.

I’m having spasms in the carotid artery too, so anxious. Haven’t been able to move my neck for months

It helps me. Thanks for sharing. Why do I have those same problems and Dr. Samji in CA doesn’t see anything? I hit my head, so I’m sure there’s a possibility of eagles. Oh well. I’m glad you are feeling better and I appreciate your information on here.

Eaglewings - Does Dr. Samji not see that you have ES or that there might be a vascular component?

I guess I have vascular issues. Feel light-headed when I turn my head. Difficulty swallowing and scratchiness on left side when talking. Styloids looked fine. I guess I’ll treat it like whiplash and head trauma, but it’s been over two years now.

this is just a thought, but check out Earnest syndrome. Also, I have TN as well as ES an other possible issues and I find that the more often I wash my sinuses, the better i feel. I understand how painful and difficult it can be. hand in there and keep looking for answers. I hope you figure it out soon

If you were diagnosed w/ ES in 2014 & haven’t had surgery, you should consider a follow-up CT scan this year as your styloid growth &/or stylohyoid ligament calcification is likely to have continued since then. A more current CT would show any progression of ES &, of course, a CT w/ contrast would potentially show vascular involvement. I’m sure you’ve read on the forum that Dr. Samji doesn’t differentiate between “non-vascular” & “vascular” ES so if you were hoping he’d identify that you have vascular ES that’s why he didn’t. However, during surgery, he does what he can to remove the styloids at the skull base, & he removes the s-h ligaments. He is as thorough as possible to help prevent future problems. I had both vascular & non-vascular ES. Having my styloids removed has mostly cured all my symptoms. I am thankful I chose surgery to put an end to my symptoms.

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Getting skin problems over the carotid pulse where it hurts. Think I can rule out eagle.

What does your doctor say about it? It’s not yellowing bruising is it?

It was a new CT. I’ve been icing most of the day for the past three days. That helps with vascular symptoms like pressure. Still have pain and feel vibrations of vocal cords on left side when talking or singing. Left side hurts when looking down. It is some kind of neck injury.

It looks like it could be yellowing like a bruise yea but it comes and goes. I’m seeing my doctor tomorrow. I hope I get treated seriously this time. Seems like my carotid might be getting damaged.