Hello. New here with some scary symptoms

General
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Hello. Im 37 y/o female. I was just diagnosed with Eagles about a month ago. Bilateral elongated and calcified styloid/ligiments. Im not sure of the extent as far as length and vascular/nerve involvement.

I have been terribly sick for 10 months with all kinds of symptoms from dizziness, muscle weakness, nausea, digestive issues, tingling in hands and feet, back of neck stiffness, heaviness feeling through entire body, random nerve pains everywhere, low blood pressure, palpitations, shortness of breath and more. I feel awful all the time and am pretty much bedridden.

I have been to multiple specialists all trying to figure out what is going on. Ive been tested for a ton of gi, autoimmune, thyroid, nerological, heart conditions and more. Everything normal except orthostatic hypotension, mild gastritis, and now eagles.

The intersting thing is i never had significant throat issues until about a month and a half ago. I had random stabbing ear pains once in a while and what feels like a congested throat for a while. Most of the drs ive seen have never even heard of this and have no idea how to help me.

I am scheduled with an ent surgical specialist next friday so im hoping he knows a little more about if all my symptoms could be caused by this. So far ive had a ct with contrast and a ct angiogram (normal).

As of now i am having a difficult time swallowing and constant neck pressure, tingling and numbness in my neck, jaw, and sometimes face. Sometimes its for the entire day, other times it gets worse with chewing. It feels like my throat/tongue/jaw get fatigued with chewing and almost go numb. I have also lost 50 lbs in 10 months due to being so sick so drs are now recommending a feeding tube.

I was admitted to the hospital last week because they thought i might be having a stroke and were worried about my swallowing issue but everything came out fine and they said it was probably caused by the eagles although most of the drs said they never heard of it.

I am curious if anyone has similar symptoms. I just dont know if i should keep pushing for more testing or if this really could all be caused by eagles? I will be discussing with the ent next week as well of course.

I also am having my dr put in a referal for dr Nakaji in scottsdale to get his opinion if he’ll see me.

This is all just very scary and i feel like im slowly dying and it makes it worse that so many drs are not familiar with the condition.

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@Anissanandez - Welcome to our forum. I am so sorry to learn how severe your symptoms are! All the symptoms you’ve mentioned are seen w/ ES though that doesn’t mean they’re all necessarily caused by it.

There are a number of cranial nerves that exit the skull near where the styloids are attached &/or that “live” in the same area of the neck as the styloids. When styloids elongate &/or stylohyoid ligaments calcify they can wreak havoc w/ some of those nerves which causes a wide variety of symptoms which can all seem unrelated.

In your case, it seems the vagus nerve (affects the gastrointestinal tract/digestion, heart rate, blood pressure, voice, breathing, swallowing, & even bowel & bladder function. Neck stiffness can often be from the spinal accessory nerve being impacted by the styloids; ear pain can be from the trigeminal nerve & throat issues - both pain & swallowing, from the glossopharyngeal nerve. Dizziness can be due to vascular compression of either the internal jugular vein (causes intracranial hypertension) or internal carotid artery (causes stroke-like symptoms).

Getting a referral to Dr. Nakaji’s office is a good idea but we have recently heard they are not good about returning calls when messages are left so you may need to be persistent in calling or perhaps try emailing for an appointment if the office has an email.

Dr. Milligan was our “go to” ES surgeon in your state, but I believe he’s retired. I recall that he trained one of his associates regarding ES so it might be worthwhile contacting that office if you don’t get help from the doctor you’re seeing next week.

•Dr John Milligan, Arizona Otolaryngology Consultants, Phoenix 602- 264 -4834, http://www.aocphysicians.com (another possible doctor there is Dr Peter Weisskopf, Neurology)

You can try icing your neck for 20 min every couple of hours using a thin towel between your skin & the ice pack. OTC lidocaine patches have helped reduce nerve pain for some of our members. Sleeping w/ your head elevated at night can help reduce vascular symptoms. You may need to experiment w/ how much elevation you need. A wedge pillow can help with head elevation. Amazon has a good selection. Some people have had good results from taking a Rx nerve pain medication such as Gabapentin, Amitriptyline or Carbamazepine.

Please keep us posted as to what you find out at next week’s appointment.

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Thank you for all the tips. I will try them out. Is there a certain test to determine nerve and vascular involvement? I thought the angiogram would but my head was straight and i know the compression typically occurs with the head turned. Or can drs typically tell just by the ct? My symptoms tend to get worse when standing though. Thanks

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Poor you, that sounds rough! I agree with what @Isaiah_40_31 says about the affected nerves; I never had any wallowing issues but did have pain in my ears, teeth and jaw and then later tingling and numbness, I think from the Trigeminal nerve being affected and also possibly the Facial nerve.
I hope that you’re able to get some treatment soon, & the doctor you see next week is helpful , or that you can see Dr Nakaji otherwise…

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A CT with contrast can show vascular compression w/o your head being turned though it shows it better if your head is in the position that makes your symptoms worsen (this is called a dynamic CT scan when the head isn’t in neutral during the scan). So, if your CT was done w/ contrast as opposed to w/o, your IJVs & ICAs should be visible.

Symptoms getting worse when standing is most likely to be IJV compression. The IJVs open up more when you’re lying supine (on your back). Some head elevation when lying down can also help release pressure in the head. Here’s a quote from a medical research paper that was evaluating IJV function relative to posture:

Internal jugular veins are the major cerebral venous outflow pathway in supine humans. In upright humans the positioning of these veins above heart level causes them to collapse. An alternative cerebral outflow pathway is the vertebral venous plexus. Human cerebral venous outflow pathway depends on posture and central venous pressure - PMC

Based on this information, if your IJVs are being squashed by your styloids, they won’t open fully even when lying down, but head elevation during rest/sleep seems to provide some relief from the pressure caused by the compression.

In an angiogram it is often only the arteries that are checked out. If they’re good, you’ll get the “all clear” report saying nothing is wrong. A venogram will look at the veins vs. the arteries (in some cases an angiogram looks at both arteries & veins - just depends on how the order is written by the referring physician). If your angiogram only looked at your arteries, & your problem is in your jugular veins or some of the veins in your brain, then those weren’t evaluated thus the reason your compression may not have been noted. In angio/venograms, head position isn’t necessarily as critical in finding compression.

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