New to Forum - lots of symptoms - undiagnosed

I want to thank you for accepting me into this group!! I can already see there is a wealth of information to be learned from a great group of people!!

My story…I was in my usual state of health (pretty good health) until May, 2019. In May, 2019 I had throat surgery for a parathyroidectomy (1 parathyroid gland removed due to benign tumor). Prior to this surgery, I had a history of 1-2 migraines per month for man years. After this surgery, the migraines became severe/debilitating and daily. I kept the headaches at bay for a while with Botox, meds, etc. However, the past few months the headaches have been debilitating and daily. The headaches are only on the right side.

Along with the headaches, I have moderate - severe pain right side facial pain located in the following areas: right side base of tongue, under the right ear following under the jaw line a bit, and the pain radiates to the back of the upper neck (basically around the base of the skull) and up to the right temple and eye. I also have right sided upper chest pain (verified by extensive testing to be non-cardiac) that can also radiate into the shoulder, and also have the sensation there is something on the right side of my throat. My other symptoms include: lightheadedness, GI symptoms (diagnosed as mild gastroparesis). The right facial/throat pain basically feels like someone put a vice grip in that area.

I’ve had a lot of medical intervention and the only thing that shows up is mild gastroparesis. I even saw the gastroparesis top specialist in the USA at Cleveland Clinic (Michael Cline, MD). His comment was, “I’m not sure what is making you so sick but I don’t think gastroparesis is your biggest problem”.

I know my own body and something is going on. The level of pain and “vice grip” feeling is not normal, but all the doctors just want to push it off onto migraine. This is not a migraine. It all starts with the vice grip pain and hours later turns into a headache when I can’t get relief from the pain. I’ve lost a lot of weight because the pain causes nausea and it’s hard to eat.

I’m really unsure where to turn or where to go to. Any suggestions would be appreciated. I’m quite ill but none of my medical team here is listening.

A few questions I have:

*Is a CT without contrast enough to diagnose Eagle Syndrome?

*Has anyone had luck transforming their CT images into 3D using Radiantviewer with a Mac? If so, would you please coach me on how to do that?

*Is this condition gradually progressive for some people (especially if undiagnosed and/or haven’t had surgery)?

Thanks in advance for any help.

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Hi & welcome to the site!
There’s lots of info about common symptoms & possible explanations, getting diagnosed etc in the Newbies Guide Section if you’ve not seen it already, your symptoms could be from ES…but to answer your first question yes, a regular CT is fine to diagnose ES. A CT with contrast is useful to see if there’s any vascular compression (headaches is a possible symptom of vascular ES but not always), so if you already have a CT then it should be fine to see any elongated styloids &/or calcified ligaments.
I think about using a Mac to transform images has been asked before (not at all tecchie so can’t help with that!)
Don’t know if this will help:
CT conversion - General - Living with Eagle
ES varies a bit with whether symptoms worsen- some people do find that things are bearable & it doesn’t progress, & they don’t need surgery, but often it does get worse to a point I’m afraid. As we age, our ligaments lose their elasticity & that can aggravate what structures the styloids compress. I didn’t have vascular symptoms, but then developed a prolapsed disc in my neck, & that caused the styloids to compress my jugular veins I think. Unfortunately surgery is the only cure for ES.
The best bet is for you to either get an appt with one of the doctors on our list- here’s link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
or to send CTs to one of the doctors who does phone appts, like Dr Samji in CA or Dr Cognetti in PA . If you’ve not already had a recent CT, then I’d suggest trying to get one done. If you do have a CT, you can upload the images here & we can have a look- we’re not doctors but can tell if styloids look elongated or not- or you could get back on to the radiology dept where you had the CT & they might review it for ES for you.
I hope that this helps, & that you can get some answers soon!

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I’m sorry for the struggle you’ve had trying to find a doctor to help you. It’s especially hard when you’re feeling so miserable.

Based on the areas you’re having pain, it sounds like your vagus, trigeminal, facial, glossopharyngeal, & accessory nerves are being affected. These nerves are often irritated by elongated styloids/calcified stylohyoid ligaments.

Getting a CT scan of the area between your skull base & hyoid bone will show if ES is the cause of your symptoms. I hope you’re able to get one soon if you don’t have one yet.

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Thank you for your response and the information.

Is this a specialized scan or will a standard head/neck CT scan suffice?

A standard head & neck CT will do; as long as they scan from the skull base to the hyoid bone it will show the styloids &/ or any calcified ligaments. Ask that it’s evaluated for ES & try & get copies if you can.

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@1speechpick Since you complain about the right sided severe headache, I just wanted to bring your attention that Carotid (ICA or ECA) irritation or compression can actually manifest as one sided severe headache as shown below. Also, the lightheadedness you described as if you were about to pass out, is called presyncope that too can be caused by irritation of the either Carotid arteries (ICA or ECA). Even the pain you describe as radiating to the neck and Skull base is called Sub-occipital pain and can be related to Carotid. So I think it is possible that you have Carotid Variant of Vascular eagle syndrome NOT the Jugular Variant. It is also possible that you have Vagus Nerve irritation. Also, your left Hyoid horn could also contribute to this and needs to be tested dynamically to rule out any contact but since you have almost all of the symptoms on the right side, I would like to closely examine your right STYLOID to see if it is irritating your Carotid arteries. Can you please post more images of right Styloid. Axial would be better or even coronal images.

This document is a good read about different variants of Eagle Syndrome. This is where I got the screenshot above.

Source : https://emergeortho.com/wp-content/uploads/2018/04/1-s2.0-S2468781220301399-main-2.pdf

It was also posted here in the research area by Andrea who I believe co-wrote this study.

WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article

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This is great information.
Does anyone know why “low backache” occurs from carotid artery irritation?

Carotid artery - barely. But if you got a “military neck” aka loss of cervical lordosis aka straight neck, then surely this can impact loads on the lower back.
From my observations, a lot of people with symptomatic elongated styloids also have loss of cervical lordosis.

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@boogs99 Good question. I really do not know the mechanism involved to cause a back pain but the body is interconnected so one can assume due to hemodynamic disturbances or tertiary mechanism such as autonomic nerve system is to blame. Do not forget that the Carotid artery body has nerves that respond to temperature changes (vasoconstriction/vasodilation), blood pressure changes…fight or flee responses…etc. See the screenshot below from the same study how an irritation of the Carotid body can cause all kinds of weird symptoms including immunoreactivity.

image

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Who knew…all these symptoms from what I thought was merely an artery. Thanks

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Thank you for this!