New Member: seeking insights on symptoms, diagnosis and advice on doctors/surgeons

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I’m new to this group and take great comfort in reviewing the conversations (but also sorry for you all for having to suffer through this). Many thanks to Jules for welcoming me in and helping me feel a little bit less alone!

SITUATION: For the past three years (since May 2023), I have been working my way through the medical system (17 specialists and dentists so far and counting) with a host of problems associated with the left side of my head, jaw and neck. The primary issue is hearing loss and discomfort, but I’m experiencing a growing range of symptoms including numbness, pain and discomfort, tinnitus, dizziness, balance issues and difficulty swallowing (more details below).

On a recent jaw and neck CT scan, the radiologist noted elongated styloid process (3.9 cm on left and 3.2 cm on right) and suggested further evaluation/possible Eagle Syndrome. I visited my current ENT (ENT #3) who basically laughed at me and stated “there is no way you have Eagle Syndrome as you are not experiencing neck pain when you move your head back and forth” and “there is no way your hearing loss could be related to the styloid process.” I shared a list of my symptoms and the potential association with Eagle with him, including references from NIH and other credible sources, and he insisted there was no possibility of Eagle Syndrome AND that I would just continue to lose my hearing with no tools to address this other than hearing aids. Extremely, extremely frustrating and totally condescending approach!

A bit more context: EXPERIENCE AND SYMPTOMS: Initially (May 2023), my symptoms began with a feeling of fullness (plugged) in my left ear. I began experiencing headaches and had multiple fainting episodes. Within 3 months, the hearing in my left ear began to diminish, I began to experience tinnitus/ringing and I started to have jaw pain, including popping, itching and odor. I’m a huge teeth grinder/clencher, so sought TMJ treatment but the symptoms continued.

Within six months (October, 2023), I also began feeling numbness on the left side of my face and neck. This was intermittent and ephemeral, and occurred in different parts of my face/neck (but always on the left side). I began to experience pain at the base of my tongue, began to have difficulty swallowing and continued itching in the jaw/tongue. My sense of taste and smell are impacted, and come and go on the left side. I also started to experience balance issues. Hearing loss continued. Not sure if this is related, but the pressure in my (you guessed it) left eye also increased and I’ve been diagnosed with glaucoma. We’re treating this with eye drops to reduce the pressure.

Currently: I continued to struggle with my left ear: hearing is diminished, my ear feels full and plugged, and the ringing is LOUD. I have trouble swallowing, my left jaw and neck hurts and I spend 2-4 hours a day with a heating pad or ice on my ear, jaw and neck to reduce the discomfort. I can’t taste on my left side. I’ve been treated by ENT, dentists, a neurologist, an acupuncturist and cardiologists, but no one has any idea what’s causing this- just the flag from a radiologist that was dismissed by my ENT.

Bonus oddity: In November 2020, I was diagnosed with cardiac “Sick Sinus Syndrome (SSS)” and rushed into emergency surgery for a pacemaker installation. The diagnosis came from heart monitor readings of repeated episodes of my heart stopping then restarting. I also experienced dizziness, fainting and wildly fluctuation (35 bmp to 165 bpm) heart rate (my normal resting heart rate is 44-54 bpm). Although I had previously experienced racing heart and irregular heartbeat, I’ve never had any cardiac electrical issues, so this was a unique situation. Am wondering now if it could be related to the other symptoms I’ve been experiencing?

QUESTIONS:

1. I’d greatly appreciate your insights: as members of this community, how can I move forward with a diagnosis for Eagle Syndrome or not. Any recommendations for next steps?

2. I’d greatly appreciate references on doctors, including experienced surgeons.

3. On the cardiac side, I have found a few references noting that Eagles can mimic Sick Sinus Syndrome. Does anyone have experience and or advice with this?

I’m currently in Houston but certainly willing to travel for evaluation and potential treatment. Denver, LA and NYC/Philly are all easily accessible with family in those locations.

Thanks to you all in advance for your insights and advice!

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Hi CAYTexas, your story is very similar in a lot of ways. Did you happen to read my post, here’s the link?

But basically, I’d say get a hold of Dr. Osborne in LA. He will see you super fast and give you answers. He loves to help people and everyone at his office seems to have the same heart. If he doesn’t think your styloids are your problem, he will tell you. But if it is your styloids or likely is your styloids, he will know and then you can move forward with what to do, either with him or whomever you choose. But at least you can have answers quickly. He knows Eagles back and forth, up and down. I just had both my styloids removed, and my heart stuff has settled big time. I haven’t had any of the heart racing. I’m pretty sure it was my vagus nerve being compressed making things so off with me. I feel great and I’m only about 3-1/2 weeks post op! I hope this helps. I know the suffering, believe me!

Here’s the link to get a virtual appointment with Dr. Osborne in Los Angeles:

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Thank you so much @LisaMaria! I appreciate the reference and link to your story. I’m happy you’ve had such success!

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@CAYTexas - I’d leave that ENT at a dead run!! Agreed that he was condescending, & I’ll add egotistical & ignorant.

Your symptoms are “oh so very ES” & likely the vascular version. The numbness you experienced in your face/neck on the left + fainting episodes could point to internal carotid artery (ICA) compression, however, many of your other vascular symptoms point to internal jugular vein (IJV)compression: progressive hearing loss, plugged ear, tinnitus, dizziness, pressure behind/in your eye, & balance issues. Brain fog &/or a sense of derealization also often accompany IJV compression.

I experienced hearing loss as a symptom of my IJV compression, but was diagnosed w/ Meniere’s Disease & treated for that for 6 years before I figured out it was likely IJV compression that had caused it. Unfortunately, I had a surgery about 3 years into my hearing loss adventure to try to stop the hearing loss which has left me w/ permanent loud tinnitus & didn’t stop hearing loss. I finally had my IJV decompression surgery 10 years after the initial onset of my hearing/vascular symptoms. That has stopped hearing loss progression but was unable to resolve the tinnitus. There is documented medical evidence that IJV decompression can restore hearing that IJV compression causes.

@Jules wrote a very comprehensive post about ES symptoms & possible causes which you can read here: ES Information: Common Symptoms And Possible Explanations For Them

In answer to your questions:

  1. @LisaMaria has given you an excellent doctor resource for getting diagnosed. Dr. Osborne is highly respected & regarded on this forum. He’s helped an increasing number of our members though he doesn’t do IJV decompressions per se unless only a styloidectomy is needed to achieve that end. Sometimes C1 needs to have a bit shaved off, too, for the best decompression results.

  2. Doctors who deal w/ vES -
    •Dr. Babu Welch does IJV decompression surgeries - •Dr. Babu Welch at UT Southwestern, 5303 Harry Hines Blvd 7th floor, Dallas, has performed surgery for VES (also Dr Lee Pride, interventional radiologist can diagnose ES) [Babu Welch, M.D.: Neurological Surgery | Cerebrovascular Disease | UT Southwestern Medical Center](Babu Welch, M.D.: Neurological Surgery | Cerebrovascular Disease | UT Southwestern Medical Center)
    •Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, email: info@denversinuscare.com or for initial consults - kcurry@denversinuscare.com

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults. Email Shantel for an appointment - SMorrison@iss.org

  1. The vagus nerve along with the IJV & ICA are enclosed in the carotid sheath. When the IJV becomes squashed, most often between the styloid & C1 vertebra, the vagus is also squashed which can result in heart issues such as yours, blood pressure problems, swallowing issues, increased anxiety/depression, gastrointestinal issues, body temp regulation, & vocal loss among other things. The vagus is the largest & most extensive of our cranial nerves & can wreak havoc in our bodies when it’s unhappy. I had terrible eye pressure, behind my left eye, heart palpitations & blood pressure problems among my symptoms besides the hearing loss.

We’re glad you found us & hope the information we provide will help you get a proper diagnosis sooner than later.

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We have a lot of the same symptoms, you are not alone! Do you also have your CT scans on hand? Lots of members here are willing to look at them if you upload them!

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Just to add in that the heart arrythmia (I haven’t heard SSS being mentioned but spikes in heart rate & also BP have been) as well as possibly linked to the vagus nerve as @Isaiah_40_31 says could be caused by irritation in the carotid sinus area . I think everything else has been covered!

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Oh dear @Isaiah_40_31 what an ordeal! Thanks for your insights and the additional recommendations. Exploring options for diagnosis now from the feedback this group has provided so THANK YOU!

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@lsheep, great option. They are rather simplistic (CT, jaw, w/o contrast) but I’ll look into posting them. Muchos gracias!

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