Hello to all! I was recently diagnosed with ES but I’m having difficulty finding an ENT near me who has any experience with it. The ENT I saw in Raleigh ordered a CT w/contrast and it showed calcifications of the bilateral stylohyoid ligaments. This explains the pain I’m having when swallowing, etc. The radiologist didn’t report anything about elongation or otherwise of my styloid bones, which is understandable considering they weren’t looking for ES. My ENT said she has only one other patient with this and that patient had success with injections. I had the injections on Oct 4th (quite painful) but the pain is no better. I’ve had this pain for the past 6 months and now that I know what it is, I’d like to see what my options are beyond steroid injections, which as I mentioned, didn’t work.
I looked at Duke Otolaryngology - specifically Dr. Ellison - because I found him on the 2017 list of doctors. Has anyone had any success with Dr. Ellison being familiar with ES or does anyone know of any other doctors within 4hrs of Raleigh, NC? What I’m trying to avoid is multiple office visits to find someone who is familiar with the condition considering the rarity. I will make an appointment to see Dr. Ellison tomorrow but in the meantime, I’m curious to hear from anyone in NC.
All the doctors on the ES Doctors’ List have done ES surgery for a forum member at some point and then been recommended by that member. That’s the only way the doctors make it on the
ES List. You can try clicking on the magnifying glass at the top right of this page then type Dr. Ellison in the search box that comes up. Any posts that mention his name should come up.
Calcified ligaments even in the absence of elongated styloids is still Eagle Syndrome & for sure cause the same symptoms.
Please let us know what happens with your appt w/ Dr. Ellison. You should advocate for complete removal of the ligaments & potentially the styloids if they do turn out to be a bit long. The external surgical route ie through the neck, provides this kind of access plus allows for monitoring of nerves. The introral route ie through the throat, allows for shortening but not full removal.
Thank you for your reply and the tip about the search option on the list - I’ll do that. I have an appointment for next week with Dr. Ellison at Duke and hopefully he can help. What I know is that I cannot live with pain every time I swallow so … fingers crossed!
@AlyceP
First off, congrats that you were diagnosed…that is half the battle! You didn’t mention how long you have had symptoms and I’m curious if you experience other symptoms that come and go or symptoms like your swallowing pain that is constant. I don’t want to intrude into your space but I am soaking up knowledge here. I have been diagnosed by about half and blown off by the other half so I’m kinda in that "what the
heck is going on and who is going to help me and when? I will be anxious to hear about your journey and of course always here to listen! I don’t have much advice at this point for you since I have not yet found my surgeon but I will tell you that PATIENCE is key here.
Hi. I’ve had symptoms since June/July 2018 but I put off seeing an ENT for 4 months because the pain would subside now and then. When it became more constant and annoying, that’s when I made an appointment with an ENT.
The pain when swallowing is constant although some days it’s more intense. Sometimes I have bilateral tenderness in my neck although I’m not sure that’s related. I also have hoarseness frequently and I cannot sing because that causes more intense pain (like … singing in the car to the radio, lol.) My ENT found it by accident because she was just ruling out anything abnormal. She told me the only reason she ordered the CT was because my husband had a malignant plasmacytoma of the soft palette a few years ago (he’s fine now!) so she just wanted to be sure after doing the endoscope that she wasn’t missing anything. Had I not had the CT, I probably still wouldn’t know what was wrong.
She did two injections. One near the styloid and one closer to my hyoid bone. The injection near the hyoid where my pain is was very painful. I get steroid injections in my knees and hip now and then and these in my neck were very different. Not to mention it didn’t work for me.
You are not intruding on my space at all! I feel badly there are so many people out there either not taken seriously about their symptoms or cannot find a Dr. familiar with ES. All my eggs are in one basket at the moment with Dr. Ellison. I really hope he can help me on Monday. I just had my records transferred a well as my CT images and report. I don’t know what state you’re in but if he works out for me, it might be worth looking into for you.
I’m fortunate to live in a meca for great hospitals as well as healthcare professionals. I have Duke, Wake Med and Rex all within a half hour of my home so if Dr. Ellison is not the one then I will keep looking.
How long have you had your symptoms, what are they and have you had imaging? How were you diagnosed?
I hope good things for you and thank you for writing!
You are lucky to have all that medical expertise near by! All your symptoms sound like you are on the right track! I have your symptoms and then some but I believe I have been working on mine for more than20 years - lots of head and neck trauma in my younger years! Its just a long nightmare of soooo many doctors and scans and tests! I am still working on getting all the docs to get on the same train. The radiologist that keeps reading my scans isn’t seeing it! Thank goodness for the 3D dental pan-am I had done in April of this year. It shows bilat calcification of ligaments and odd angles and thickness on SPs. The actual SPs are only slightly elongated they say. I had to finally turn my head upside down on the pan-am to get a good look at my hyoid bone and there the ligaments were! Also have several severe issues in my cervical spine that need attention and am thinking of doing that first but terrified it will aggravate the eagle. As is the case with most everyone, I have my good days and my bad but altogether i would say I have approx 20 separate symptoms off and on - half a dozen or so that are constant. Tramadol and flexeril have become a steady part of my diet LOL! I have had all my lower molars removed along with other dental stuff. Luckily i was finally diagnosed so that I at least know what it is and how to deal with it now. Prior to the diagnoses I spent the last several years in a depression that grew deeper by the day…started trying different meds for it and nothing working. Safe to say I was going down for the last time when I finally wouldn’t let my ENT blow me off anymore. My dentist told me the mass under my ear and kinda behind my jaw were not dental related and my ENT needed to get it figured out and on my next visit he finally dug deep enough to find it - WHEW. Little did I know that was only half my battle! Now I have purchased a laptop to load that pan-am onto so I can take it with me to show the docs and radiologist what all those fancy and expensive scans haven’t shown! This thing has cost me quite a pretty penny over the years so what’s another few hundred dollars? I have not yet had any injections, getting tired of masking what may be causing more damage than can be repaired already!
I feel for you Since ES is so rare, it’s also very frustrating to find care for it. I too had head/neck trauma. In 2002 I was in a rather serious motorcycle accident and ended up with compression fractures in my thoracic region from landing on my head. I had another accident in 2010 and my head hit the ground hard but no broken bones thankfully. My CT showed issues with my cervical area, specifically C5-6 although I have no symptoms. But, it makes me wonder if that trauma has something to do with the problems I’m now having. I’ve been reading about how trauma can cause problems with the styloid.
It must be extremely frustrating for you to have so many dr.'s but not on the same page. I agree with you about masking the real issues. I tried the injections because I’d like surgery to be my last resort. From all my research it seems it’s the only way to make the pain go away.
I wish you the best of luck with your doctors and thank you for sharing with me.
Since ES is so rare, it’s also very frustrating to find care for it. I too had head/neck trauma. In 2002 I was in a rather serious motorcycle accident and ended up with compression fractures in my thoracic region from landing on my head. I had another accident in 2010 and my head hit the ground hard but no broken bones thankfully. My CT showed issues with my cervical area, specifically C5-6 although I have no symptoms. But, it makes me wonder if that trauma has something to do with the problems I’m now having. I’ve been reading about how trauma can cause problems with the styloid.