ES and symptoms

General
1

Hi Everyone,

I keep debating if this site will help bring me comfort or worry! I’ve been a wreck and feeling anxious.

I have had varying symptoms since the end of November. It began with a clicking in my throat which led me to my PCP. She had explained that I likely pulled a muscle and to give it 3 weeks. IF not, and I still felt discomfort she wanted me to see an ENT.

I had a flare-up on December 26 that led to difficulty swallowing, throat fullness, and eventually, my ears to pop, and crackle. The ER admitted me and tried to distinguish between an ENT issue or a GI issue. They did a few tests in the hospital: barium swallow, laryngoscopy, and neck CT scan. At that time, all appeared normal. Lab work was also showing normal/stable.

It’s been a rollercoaster of tests/symptoms since then with another flare-up on 1/21 where I could feel my throat uncomfortable when drinking HOT drinks around the middle of January.

During all of this discomfort, I’ve never experienced pain but wildly uncomfortable from my throat area.

My PCP ordered an MRI a few weeks ago that was compared to my December CT and it was noted that Eagle Syndrome with ossification/calcified stylohyoid ligament.

At that time, I decided to switch my doctors to Northwestern in Chicago.

I’ve now seen 3 ENTs and set to see my fourth one at Northwestern. I did see Dr. Bove at Northwestern who suggested another CT to get exact measurements of ligaments. The results were turned around within 1 day and my right styloid was is measuring 3.8cm and my right 3.1cm.

At that time, they walked me through the process and recommend another ENT to meet with as Dr. Bove is not performing surgeries at this time. I am set to meet with her March 9th.

My biggest concern is swallowing discomfort. It feels like I have rocks in my throat under the chin/upper throat area when swallowing saliva or when placing fingers on the right side of the throat I can feel lump. When I swallow it feels like a cobblestone sidewalk. Middle of throat and middle of the throat is most bothersome. Eating and drinking are not seamless swallow and I’ve lost approx 15lbs since this has begun. My ears also crackle with each swallow. I also have larger tonsils but never an infection.

Everything has that could potentially be has been ruled out but I worry about what next steps could be. Also, my symptoms don’t appear to be “typical” and it’s been explained that I fall into this grey area since imaging shows elongated styloid but I don’t have the pain associated that most people experience.

The tests I’ve had:
Larynogscopy (3x) with each different ENT
Barium Swallow
2-CT scans w/o contrast
MRI
Endoscopy
Scheduled motility study
Thyroid Ultrasound

What they thought I’ve had:
TMJ
Globus sensation (did experience this back in December with flare up)
Acid Reflux
Anxiety

Anyone share these symptoms or feelings? Thanks!

2

Hi Rachel1220,

I don’t know who told you that your ES symptoms are atypical as they are all very common symptoms of ES. You can use the magnifying glass icon in the upper right & type in any of your symptoms & posts will come up that discuss that type of symptom. Unfortunately, people/doctors who know about ES but have not experienced it tend to misunderstand the broad array of symptoms it can cause. Some will even misdiagnose & tell a person w/ elongated styloids or calcified stylohyoid ligaments that (s)he doesn’t haven ES if specific symptoms aren’t present. That is a very wrong approach.

The symptoms of ES are largely due to irritation of up to 6 of our 12 cranial nerves - the trigeminal, facial, glossopharyngeal, accessory, vagus & hypoglossal. The vagus nerve is the biggie because it controls anxiety levels, gastrointestinal function, heart rate & blood pressure & even plays a role in thraot pain, among other things. There is a series of Youtube videos called Two Minute Neuroscience that covers the location, function & symptoms of dysfunction for each of the cranial nerves I mentioned. You might be interested to look them up.

It does sound like you have bilateral symptoms so getting only your most problematic styloid/calcified ligament removed may not give you complete relief from your symptoms. Most of us who’ve had bilateral ES have had to have both styloids removed in order to feel more normal again. I had my surgeries in 2014 & 2015 & they gave me my life back. Like you, I was very active prior to my ES symptoms starting & had to slow down a lot but I’m back to my very acrive lifestyle again & am so thankful.

3

Thank you for the reply and for direction on how to better navigate this site! I will be sure to use the magnifying glass to see posts related to questions I may have. I am very interested to learn what the next ENT will suggest on 3/9. She specializes in head/neck and cancer surgery. We will use time to review CT scan in great length. My hope is that she will also be able to feel the discomfort I do when swallowing. Like others, I have had family members feel this 500x. I feel like a crazy person!

I imagine I will return needing more insight after my next appointment. Unless I think of additional questions before then.

This has been a beyond frustrating journey that has interrupted so much of my normal-including sleep. I hope to know more soon.

4

Rachel1220,

The gal you’re seeing next is definitely the correct specialty for doing ES surgery as the most experienced ES surgeons on our list are ENT cancer specialists. It would be a good idea to print off one or more of the research papers to take with you to your appt. (see link under the General category on the main page). Especially look for any where at least some of your symptoms are mentioned. You can also do a Google search as there are many papers out there. Often only the Abstract is available, but your doctor being a medical professional should be able to access the full paper.

If she recommends surgery, ask her whether she will use the external or intraoral approach. We think the external approach is best because it gives better access to to the styloids & stylohyoid ligaments, nerves can be monitored to protect them during surgery & the post op recovery is quicker w/ a lower infection rate. We recommend that the styloid(s) be removed to the skull base & the stylohyoid ligament(s) are removed down to the hyoid bone if they are at all calcified. This will provide the best long-term results for you. It’s very important to know the doctor’s approach & surgical philosophy when deciding what your next steps will be.

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Hi & welcome!
Here’s a link to the info about common symptoms & what might cause them from the Newbies Guide Section:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
My symptoms were even less typical than yours! I never had any pain or trouble with swallowing, but did have neck, jaw, tooth & ear pain, ear fullness, & later vascular symptoms, so we’re all different!
One of our members had similar symptoms with the clicking & swallowing problems (her name was Sewmomma if you want to search for her posts), & her ligaments were calcified from the hyoid bone upwards, which is a bit more unusual. In addition to all the advice Isaiah has given you, it’d be a good idea to have the new ENT have a look at this when you look at the CT, & as Isaiah says to check that all calcified sections of the stylo-hyoid ligament will be removed.
I hope your appt goes well, will you let us know how you get on? A shame that Dr Bove’s not doing surgery at the moment.

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6

Hello!
Thank you for the warm welcome and for sharing your experience. I’ve spent the past two days reading MANY of the posts. It has left me comforted and also worried. I’m trying to take in all the information and also wait to see the direction offered by doctors. I will def be sure to ask all the recommended questions.

They did mention on the phone and during a visit that the procedure is done intra-orally. After reading some of the stories I remained panicked as they would have to also remove tonsils. The recovery seems long.

I also worry (like many people) that if surgery is the best option that I somehow won’t find relief. I am symptoms now that correlate for ES but I certainly don’t want new issues to present following this type of surgery.

The swallowing issue I currently experience is bothersome and difficult but I manage to get things down. I do have to take other medication 2x daily and I panic thinking about doing that If I have to have the intra-oral procedure.

Do you know if people find their symptoms to be heightened following surgery or if what they experience post-surgery is directly related to incision/area.

I have mostly been on a soft-food diet for 2months as swallowing hasn’t been what it used to be…so I don’t worry too much about that. . again, I’m not in any pain swallowing nor do I have pain when turning neck.

I also was bummed to hear about Dr. Bove not performing surgery. Though, the team recommended two other doctors.

Thank you!!

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7

I had external surgery, so haven’t been through intra-oral surgery, but from what I’ve read it seems as though it’s the swelling & incision that’s painful rather than exacerbated ES symptoms, whether that makes any difference to your thoughts? And surgical techniques do vary, the tonsils aren’t always removed.

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