New here…

[SunflowerGirl]

Hi, I’m new here. My name is Stacy, and I’ve suspected Eagle syndrome for about a month now, thanks to my husband, who is in medical school.

I’ve been having debilitating symptoms including vertigo, numbness in my face, neck, and head, and sometimes even numbness going down my leg. I also have severe POTS episodes and intense pain when the side of my neck is touched. At times my throat will be completely numb and I have difficulty swallowing. I’m showing issues with my vagus nerve. I fell like a Tia I had two years ago was from this. Sometimes it feels like my brain is on fire and starved of oxygen.

At this point, I’ve basically only been able to sleep on my left side and occasionally on my back, though even that can still cause problems with numbness and compression.

Now that I’m understanding more about Eagle syndrome and its symptoms, I can see I’ve probably had this for quite some time, and it’s just progressively gotten worse.

I’m currently seeing Dr. Xie at Barrow. She was very kind, listened to me seriously, and immediately ordered a CT scan. I do have major issues with anesthesia, as well as severe allergies to contrast dye, Benadryl, and many other medications, so I’m concerned about how I’ll safely get proper diagnosis and possible surgery. But honestly, I feel like I need something that can help because this has become so debilitating.

Strangely enough, my chiropractor was actually the one who noticed the Eagle syndrome on my x-rays, which ended up confirming what my husband suspected all along.

I would really appreciate any advice or guidance from others here. At this point, it genuinely feels like I have a toothpick stabbing everything in my neck, and it’s incredibly painful.

I’m not sure how to attach my x-rays, but if someone can tell me, I will and you can literally see it moving

[LisaMaria]

Hi Stacy,

Wow, you are just going through it! I know it’s crazy all that can go wrong from this. I had my styloids removed April 28 & May 1. My counsel to you is get in with someone who specializes in this asap, getting a settled diagnosis will help you moving forward: dealing with insurance, getting scheduled and all that needs to be done. Once your ct scan is done, there are several doctors you can talk to quick and get virtual appointments with: Dr. Osborne in Los Angeles, Dr. Samji in San Jose and Dr. Aghayev in Turkey. All three of them are very experienced with Eagles. I recommend the highest Dr. Osborne as that’s who I went with and the level of expertise blew my mind, but also for you specifically having concerns about anesthesia. I personally have central sleep apnea, so much care had to be done for me - I found out from Dr. Osbornes and his anesthesiologist (Lori) that things need to be specialized because typical methods can be dangerous for people with central. Lori did an amazing job putting together a plan personalized for me to get me through both surgeries. I did very well under her care. She is so sharp and so on top of things, she’s brilliant. My surgeries were long too, the first one was three hours and the second one was five. I had super thick styloids (like ten times thicker than most people’s on one of them) so the procedure to get mine out was extended significantly due to that. I came through both procedures very well. I hope this helps as I know the idea of going under for surgery is scary enough but when you have extra sensitivities it’s even more concerning. So glad your husband was on the alert to this!!! Good for him!

[Jules]

Hi & welcome to the site! Great that your husband is aware of ES & that your chiropractor spotted it too!
It does sound like you have vagus nerve issues, and possibly some vascular compression too, so a CT with contrast would be helpful to show that- is it the iodine you’re allergic too? I’ve done a quick search & there might be alternatives - Low-osmolality, nonionic contrast media apparently, but it’s not something I know about so I don’t know how easy it is to get this… Some people have had MRIs with contrast but the gadolinium can cause issues too… The vertigo can be common with jugular vein compression, TIAs with carotid compression. Some members have had doppler ultrasounds of their neck which can sometimes show vascular compression too, & if there’s positions which make your symptoms work they could do this dynamically, & would obviously be safer for you…
There are nerve pain meds which can help , especially with the toothpick stabbing pain, ice &/or heat can help with neck pain. If you’ve not tried sleeping propped up, that might be an idea as this can help if there is jugular vein compression.
With the doctors, Dr Nakaji in AZ is very experienced with vascular ES, but does like more invasive testing for this, so would want a CTV with pressure testing manometry. I think a couple of members were turned down by him because they had MCAS, so not sure if he’d do the same as you have allergies. Otherwise Dr. Michael Lawton in AZ has treated some members with VES.
As @LisaMaria says, Dr Osborne is very experienced with surgery, & whilst he’s not a vascular surgeon, he is used to removing the styloids right up to the skull base, which is what’s needed for IJV compression if you have that, and as @LisaMaria says he does do virtual consults without expecting patients to have surgery with him. (But he doesn’t take insurance so might not be right for you to see if you do want surgery)
Dr Samji wouldn’t be such a good bet as he doesn’t treat vascular symptoms.
You can use the upload feature at the top of the test box for images, just make sure there’s no personal details on them to protect your privacy…
I hope that you can get diagnosed soon!

[SunflowerGirl]

Before we figured out it was Eagle syndrome, my chiropractor was doing some testing because he suspected cranial instability. I had already seen a vascular surgeon who performed vascular ultrasounds to check for compression, they didn’t find anything and said all of my arteries and vascular structures looked really good. That’s the only test I’ve had so far, so I don’t know if other testing might show something different. That test did trigger severe vertigo for me, though.

I’m not entirely sure what I’m allergic to specifically. I just know that I’ve reacted to contrast agents during both MRIs and CT scans. I have chronic inflammatory response syndrome, mast cell activation, and some mitochondrial and enzyme processing disorders that make it extremely difficult to tolerate medications I react to about 90% of them. Because of this, it’s been pretty much ruled out that I should never have contrast again, and they’ve also said I should avoid elective surgeries because I’m allergic to one of the sedation drugs they use. Unless it’s an emergency, they don’t want me going under. At this point, given my symptoms, I feel like this may fall into emergency territory.

My husband is going to speak with one of his professors about a laser treatment they’re researching at his medical school, so that may be another avenue worth exploring. From what I’ve been reading, there’s actually quite a bit of research being done right now on Low-Level Laser Therapy (LLLT), also called Photobiomodulation (PBM), for calcified bony tissue. It works on multiple levels at once — affecting inflammation, stimulating cell metabolism, activating mitochondrial function, and supporting tissue repair. I thought that was interesting given my own mitochondrial issues.

On a more hopeful note my doctor at Barrow Neurological Institute has already mentioned that when she performs these surgeries, she goes in through the throat for removal, which sounds like she’s done this before. They also accept my insurance, so that’s a relief.

I’m attaching X-rays my chiropractor took, one looking up, one straight ahead, and one looking down. You can actually see the styloid process moving in them. My chiropractor was blown away and said it was the first time he’d ever seen anything like it.

It’s a disorder I wouldn’t wish on anyone, that’s for sure.

[Jules]

Yes, the styloid process does move as you move your head, that’s why with vascular compression it doesn’t always show if your head is in a fixed position; jugular compression for example gets typically worse when you look down, carotid artery compression can be worse if you look up, & either when you turn your head to each side- but this does vary depending on the angle your styloids have grown in…
We’ve had some discussions about MCAS, & some info about genetic testing to see which medications to avoid, you might find this discussion quite interesting:
Pain Meds Post Op with MCAS - Symptoms and Treatments - Living with Eagle
I’m sorry that your reactions have been severe & surgery will be very tricky…
I don’t know too much about the laser therapy you mentioned, but from a quick look online it sounds as if Photobiomodulation is more for supporting bone repair; with ES the styloids and stylo-hyoid ligaments have calcified & grown longer than they should be, so while the laser therapy might help with the inflammation in your neck, it would be unlikely to solve the issue of the styloids compressing nerves & blood vessels (if my understanding of it is correct), you need the styloids removing…
Also I would read up on the intra-oral surgery if that’s how your doctor does this- if there is vascular compression this method isn’t the best methos, as there’s less visibility of the structures, less of the styloid process can usually be removed, and so there might not be enough removed to improve symptoms, and also there’s a greater risk of infection too. It’s also a more painful surgery to recover from. There’s info about surgery in this section, the pros & cons of external vs intra-oral, questions to ask your doctor, recover etc:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle