New Member- My ES Story, Multiple Symptoms and Jugular Vein Compression

Vagus nerve compression doesn’t necessarily go hand in hand w/ IJV compression, BUT vagus nerve irritation/compression can also be caused by an elongated styloid or styloids. Many of our members have had some form of vagus nerve symptoms related to ES.

Nerves don’t show up on CT scans or MRIs. You need to get a specialized scan called a neurogram which is either a CISS scan or FIESTA MRI. It can be challenging to get referred for one of these & it can also be difficult to find a location that has the right equipment/software to do one. As this technology improves, I expect these scans will become more common place but that may be a few years off.

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I am aggressively putting my case together to get this 3d ciss scan. If your imaging shows a squashed jugular at the C1 area it stands to reason the three cranial nerves coming out of the jugular foramen could be having an issue. This is especially true if your styloids are thick like mine at the skull base.

I have symptoms that could be associated with the three nerves coming out of the jugular foramen.

It seems like this scan should be done as a differential diagnosis. Hard to understand why it is so hard to get. A local mediocre hospital has the software in Indiana.

I am thinking this is an issue , in part, of doctors just not knowing about the scan

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@JugularEagle - I had to look up which nerves these are. They’re the glossopharyngeal (CN IX), vagus (CN X) & accessory (CN XI). You may be interested in watching the YouTube Two Minute Neuroscience videos that cover the cranial nerves especially the facial, trigeminal, glossopharyngeal, hypoglossal, vagus, accessory, & vestibulocochlear. Here’s a link to get you started: https://www.youtube.com/watch?v=cWGf2tz0D90

I hope their techs aren’t mediocre at doing the scans & the radiologist at reading them.

This could definitely be part of the issue.

If you think about all the patients you have seen on this site with squashed jugulars it is very likely that many had symptoms that would line up with those three nerves that come through the jugular foramen. I ,for sure ,have issues with two. I have to look up what happens with accessory nerve.

What i dont know yet is if they can be seen through the squashed area with that 3d ciss.

And yes, i dont hold out hope that the radiologist will be able to figure it out but give me the scan and maybe someone out there will recognize the issue.

Good luck with your surgery. I will be interested to find out if hepworth straps down your arms over your head like harrisonboy. I didnt see that in the osborne surgical videos. I know they do some weird stuff to the body when doing a hysterectomy. One patient found out they had her legs over her head.

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The accessory nerve innervates the SCM in the neck, the traps & other shoulder muscles. Typically an irritated SCM causes neck, shoulder, &/or collar bone pain.

Oh yes, i have that for sure. I have a physical therapy session scheduled next week with someone who the oral surgeon highly recommended. I am going to show him my radiant 3d scans to show what to watch for. He may decide too risky. I am going to bring up that accessory nerve issue.

My right side is worse. That is also my worst styloid. I am left handed so writing etc isnt the issue.

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@JugularEagle , here’s a paper co-authored by one of our members which might be useful to take for your appointment:
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 - General / Research Papers - Living with Eagle

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I had a recent checkup with my dentist who does TMJ work. He checked the muscles near the jaw and really didn’t see anything out of the ordinary. He will be making an orthotic for me, but my issues don’t show classic TMJ. I’m led to think that the clicking on right side of jaw, pressure in the ear, sensitivity in jaw joint, sensitive nerve from the jaw into the face as well as popping in the ear cartilage is in some ways caused by the styloids. Would that make sense?
More and more I am getting sore nerves from the neck under the jaw. This scares me alot because i am terrified that this is going to get worse. So many people end up with hell-fire nerve pain and I am even more terrified that I will end up having to get surgery. I know I’m not the only one here dealing with this nightmare, but don’t know if my body can handle the surgery with head to toe nerves that are already inflammed and irritated.

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Seems like you would be a good candidate for the elusive holy grail of the Fiesta or Fiesta C/Ciss or 3d Ciss MRI to show if you are having nerve compressions if you can get someone to order it for you. Unless you are in India and then you can order it yourself for $60 US bucks

I saw a pic somewhere that had what looked like a bloody styloid placed outside the persons face to show where it had been. When I looked at it I could envision why I am having issues underneath my jaw.

When I had my MRI bad reaction I had hell fire pain all over my body. And a lot of itching. So there could be some other bizarre cause for some of your problem unrelated to your Styloids or things you already know about.

I use a saying with my GP. I remind him at every appointment.

Often with me the most obvious cause is not the only cause, or even the biggest cause, or even a cause at all.

Although in my next appointment I am going to finally concede that I may have found the primary cause for some of it with these Styloids. Thanks to a good dentist who spotted it.

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I’m sorry that you’re getting more nerve pain, I hope that you can put surgery off…the nerve pain medications do help some, otherwise lidocaine patches might be worth a try? @JugularEagle is going to try lidocaine oral gel or lollipops, (can’t remember, but you’ll update us with that won’t you @JugularEagle ?)

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Yes, but dont expect it soon. Everything is a battle here. I am going to try to get the lidocaine mouthwash to see what it does. I do advocate trying the lidocaine patch.

However, my experience will be tainted as lidocaine is listed as one of the drugs i may have a P450 problem with as per Flockhart table. But that might not apply as much to topicals or mouthwash.

One thing that did help that you can get OTC was salonpas menthol patch. It is the right size and did stay on pretty well.

This might be evidence that lidocaine just might not work as well on me since I got more relief from that than lidocaine patch

Your mileage may vary as the saying goes

Also, i just remembered that i have a script for lidocaine cream and gel somewhere. I am going to give that a try and see what happens. I have no idea how those formulations differ from what you can get OTC

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@JugularEagle I know for the patches that the prescription is slightly stronger than the over the counter. I didn’t think an extra 1% would make a difference but I was surprised how much better the prescription one worked. I hope you have some luck with the prescriptions.

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I will warn everyone that insurance for lidocaine scripts can be tricky in the United States. For example, I was getting one version of Lidocaine topical but when I changed insurance they refused that version and wanted a different version. When my Doctor originally prescribed the 4% patch the insurance refused and needed it to be 5%. Then we had to go through several attempts at getting it pre-approved.

The patches bill at a high rate and are paid at a high rate.

I encourage people to experiment with it to see if anything will provide relief. As you said, 1% made a big difference so don’t give up with the first try of something.

As you can see with my MULTIPLE examples, genetics may alter effectiveness of any of these pain relief products. When I was first prescribed Oxy I couldn’t understand the big deal. It did nothing for me. I was so paranoid about the addiction issue that I only took a few. Then I quit taking it thinking why risk getting hooked if it does nothing for me. It took more than a decade to figure out why.

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Have you had your appointment w/ Dr. Hackman yet, @MisterFrodo? I’m thinking you’re scheduled with him sometime this month. I think you’ll find having a conversation with a knowledgeable ES doctor will be helpful for you.

These are all symptoms we’ve seen with ES & have seen resolve or reduce once the elongated styloids/calcified stylohyoid ligaments are removed. My TMJ pain which was fairly significant has been mostly gone since I had both of my styloids shortened. I had a lot of other pain my face, L eye, neck, mouth, tongue, & shoulders plus heart rate & blood pressure issues which all resolved or nearly so after my styloidectomies. Please don’t take this to be me pushing you into surgery, I just want to give examples from what I personally experienced from ES surgery. My surgeries were life giving for me.

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