2 years and no answers

Hi all, new to this forum! I’ve had some weird symptoms that may be related to Eagle’s although I have not been diagnosed. The reason I’m here is that I feel two finger like bony projections on both sides of my uvula that I can feel with my tongue. My tonsils were removed when I was a kid. I’ve attached 3d pictures below with a brief explanation of where they came from. This complaint started last (year see the last page for a complete list of symptoms). My symptoms and story are as follow:

Complaint lasting 4-6 hours (avg.)
Right Ear Pressure/pain (warning sign)
Right Throat Pressure/pain
Right Neck pain
Right Shoulder pain that radiates down around the shoulder blade and down the right upper chest
Racing/Pounding Heart
Brain Fog
Blurred Vision
Nausea (sometimes; can barely eat when its at its worse; general diminished appetite)
Dizziness (when at its worse)
Trouble finding words
Right Side Headache/Pain (can also migrate to the back of the head)
Heavy breathing/Feeling that something is putting pressure on my neck
Dry Cough

I call these “episodes” as they seem to come out of the blue and resolve themselves and cause exhaustion. They either happen out of the blue (like sitting on the couch relaxing), after exercise, and stress (more on stress later). They began happening sporadically, maybe a couple of times a week in November and December 2021. The symptoms were mild enough that I didn’t really think much of it other than I stopped eating normally. By February/March, these increased in duration to 3-4 hours and increased in frequency to 3-4 times a week. The intensity of these attacks was extreme to the point that I shouldn’t have been driving; I felt like I was driving drunk (blurry vision, pounding heart, ear/throat/neck/shoulder pain, nausea) if that makes any sense and was not sure if I would make it home in one piece. I remember being in the Chicago airport (I’ve traveled a lot so this is not flight anxiety) and feeling like I was about to pass out as I was walking to my gate to the point where I had to fix my eyes on the floor to avoid getting really dizzy. I would often be unable to eat due to nausea during these episodes and would rely on zofran. After March 2022, the frequency and severity of these episodes lessened but they picked back up in late July 2022. They have started to become very frequent (5-6 days a week) and lasting more than 8 hours on occasions and are going back to levels in February. These happen at random times during the day during the week and weekends.

When I get these, a warning sign is typically popping in ears followed by pressure in the right ear, right sided throat pressure, pounding heart beat, right sided headache, right sided neck that goes down to the collar bone, right shoulder and shoulder blade pain, chills/cold sweats (e.g I wore a t-shirt, boiled wool sweater, fleece jacket and winter jacket in these house last week which was at 70F), nausea, freezing hands, choking feeling when even when not wearing anything with a collar and even if the collar is loose, inability to concentrate, irritability. I have problems with blurry vision when they are at their worst. I also have a hard time speaking more than a few words without having to catch my breath and also have problems recalling words and will often pause for 30 seconds to try to find the right words. I will also slur my speech.

I have tried to rule out allergies and anxiety.

When this all began, my PC referred me to the following:

Brain MRI (normal)
Echocardiogram (normal)
Endocrinologist (normal)
ENT (deviated septum)

I did end up having sinus surgery to help some breathing issues that I have had in the past. I did ask the ENT about the ear pressure and throat pressure and he stated he couldn’t see anything that would cause it. I went and saw him a few weeks ago regarding the bone like protrusion in my throat and he said he couldn’t see anything. He did not try to feel for them though. He said that he would refer me to an oral surgeon but his office is making it very difficult to get a referral.

I did obtain a copy of my sinus CT scan and made a 3D model which I think shows elongated styloids after my appointment but I’m not sure if that’s the case:

Could this be Eagle’s? I was just out of the country and it was miserably cold causing my symptoms to flare up so my apologies if this is not coherent. The brain fog is in full force.

Screenshot 2023-06-21 120236|622x500
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Looking at your CTs, the styloids do look a bit longer than average, they’re angled which can cause symptoms and also look quite thick. If you look at the common symptoms & possible explanations post in the Newbies Guide, you can see which of your symptoms could possibly be due to ES. It sounds as if you could well have vascular issues (a CT with contrast should show this, especially if you can get one done if there’s any particular position where you get the symptoms, although these are usually done with the head in a neutral position.) Dizziness, ear pressure, headaches, difficulty concentrating & vision issues can all be vascular symptoms. The choking feelings, shoulder pain , pounding heart can all be ES issues. It might also be worth looking at Thoracic Outlet Syndrome & Hyoid Bone Syndrome also with your cold hands & the choking sensations…
It’s certainly worth trying to get a referral to one of the doctors on the list who are experienced if you can!

Thank you Jules. I tried to measure them but wasn’t really sure how far to go back. You tube videos show drs. going back to slightly below ear opening but it’s hard to get a clear view. Should I proceed trying to get a referral to an oral surgeon? I don’t think we have any specialist here in Kentucky unfortunately unless there is a dr. that takes telehealth elsewhere.

Hi @alwayssunny! I love your screen name. Welcome to our forum.

I’m sorry you have so many really awful symptoms & many do sound like ES. @Jules has offered good suggestions regarding other possibilities for some of them, too.

It’s my opinion that you should skip the appt w/ the oral surgeon as I think it will be a waste of time & $ for you. We have one doctor on our list for your state - •Dr Bumpous, U of L Physicians, 401 E Chestnut St # 710, Louisville, KY 40202, (502) 583-3687 https://www.uoflphysicians.com/ear-nose-throat . An appointment w/ him might be more fruitful. Other options if you want a video consult would be Dr. Cognetti in Philadelphia or Dr. Samji in San Jose, California. Many of the doctors on our list don’t do virtual consults. There are other doctors in states near you who are familiar w/ vascular ES so if Dr. Bumpous isn’t helpful, we can give you other options.

In answer to your question, you don’t need to measure your styloids. They do look longer, more angled & thicker than normal. Along w/ your symptoms, that’s enough evidence to suggest they’re causing trouble. Elongation is only one aspect of the styloid processes that can cause symptoms. In the absence of elongation, how thick, twisted, angled, & pointed they are can also create symptoms. Very short styloids that are angled inward toward the spine can cause compression of the internal jugular veins IJVs) by squashing them agains the transverse processes of the C-1 vertebra. Longer styloids can cause compression of the internal carotid arteries (ICAs). To me, your symptoms sound a bit more like ICA compression than IJV, but some vascular ES symptoms are ambiguous so getting the suggested CT scan w/ contrast will help resolve what’s truly going on. As Jules suggested, CTs are most often done w/ the head in neutral which often doesn’t show vascular compression, thus we recommend getting a dynamic CT scan i.e. w/ the head in various positions to see if compression is occurring in positions other than neutral.

From the symptoms you’ve listed, it seems like your vagus nerve (nausea, exhaustion, maybe chest pain, cough), spinal accessory nerve (shoulder, scapular, & neck pain if you have it), glossopharngeal nerve (throat pain/pressure), & trigeminal nerve &/or vestibulocochlear nerve (ear pain/pressure) could all be irritated. The headache can also be caused by cranial nerves such as the trigeminal but is more likely based in vascular compression.

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Thank you so much Isaiah. I’ll try to get a referral from my primary care provider. I did mention it to my last primary care physician but he was about to retired and just shrugged and said he’s only seen one case in his career. I think he was checked out. I now have to start with a new doctor so I’m not sure how she is going to react. Worth the try! Has anyone tried to contact one of these physicians without a referral?

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@alwayssunny - Whether you can make an appt w/o a referral seems to depend on two factors - your health insurance requirements &/or the policy of the doctor you want to see. Some docs require referrals whereas others don’t. Usually PPO health insurance doesn’t require that you have a referral but it’s best to check.

OK. My throat is killing me today so I made an appointment with my PCP. Turns out that the doctor I was seeing is not retiring until the end of the month so I will be seeing him tomorrow. I’m a little apprehensive about bringing pictures because I don’t want to look like a hypochondriac (I know he probably thinks so already). What would you suggest brining as pictures? Just the ones I attached?

They area angled.

I’d take the picture you posted or the one below which I’ve annotated to highlight your styloids. Unfortunately, the angle of the image doesn’t give any indication of styloid length. It’s also important to see the hyoid bone as there’s a ligament that runs from the tips of the styloids down to the lesser horns of the hyoid bone - the stylohyoid ligament. When those calcify they can contribute to the styloids elongating, but they can also calcify in sections that are separate from the styloids. If you have some s-h ligament calcification or even some hyoid abnormalities (these cause ES type symptoms, too), they are not visible in this scan.

If you have time you could print off one of the research papers which mentions your symptoms & take that as well. I hope that your PCP listens to you! Let us know how you get on…

Thank you all for the answer. Found out I had a double ear infection so it makes sense as to why my symptoms have increased.

I did mention it to the doctor and showed him the picture. He knew about all the symptoms as he’s been trying to figure out what’s wrong but I’m starting to think he was just humoring me. He told me that there was no way I could feel those given the location. I can reach the back of my throat with my tongue so I know I’m feeling something. He then proceeded to hand me a medical atlas for me to peruse while waiting for my strep test results to come back so I won’t be getting a referral.

My insurance doesn’t require a referral for me to view a specialist. I may just send Dr. Bumpous and email outlining my symptoms with a picture of the styloid and see if he will see me. Worth a shot right?

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Good thing your insurance doesn’t require a referral! Might be worthwhile calling Dr. Bumpous’s ofc to see if he requires one. It’s definitely worth sending him an email outlining your symptoms & even the CT image, though it won’t be terribly helpful. It would be great if he is willing to order a new CT scan for you.

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Hope the ear infections clear up soon, such a shame your doctor wouldn’t help…let us know how you get on with Dr Bumpous…

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