Hey everyone! I’m Dillon and I’m from the east coast of the United States and am currently employed as a sports broadcaster. I just recently joined but have been reading articles on this site for the last year and a half.
I have been dealing with a variety of symptoms that seem to point to ES - headaches, trouble swallowing, tightness on one side of my face, feeling like I can’t turn my head to the right, clicking in throat when swallowing, occasional numbness in extremities, opening mouth wide is hard, ears ringing, a bit of brain fog, etc. But the most glaring proof is that I can stick my finger to the back of my throat below/behind my tongue and feel a bone sticking through almost touching my epiglottis from the right side - it’s so long!
I feel like I have to sit, sleep, and move a certain way to keep from triggering anything. I have become fairly quiet and reserved and am not myself. Talking a lot makes it tough because I am a broadcaster lol. I get paid to talk. I have anxiety at times although I’ve learned to manage. I notice that when I look down it is triggered (ex: looking at a computer screen) - it made my final two years of college tough. I couldn’t get good scores on tests because I had to look down at the paper and I would have an anxiety attack or headache. The everyday things became tough.
There are some days when it goes unnoticed - and others where it is constantly aching. I first thought I had a tonsil infection or stone (I still have tonsils) but I didn’t have that. Before I noticed it in my throat, I went to my family doctor who referred me to a ENT Specialist for a swollen salivary gland. He looked at my throat and said it looked clear and said it was a normal thing that could be caused by stress then said it would go down on its own unless it clogged. I was relieved for that news - but then after coming home I stuck my finger back there and actually felt it sticking through.
Thanks for reading this - it’s been a long time coming for sure. I have two beginning questions;
Hi Dillon. The symptoms sound a whole lot like what a lot of other people with ES feel. I have a different set of symptoms than you but we are all different. I do however get anxiety attacks like you describe which I believe is caused by ES. You will want to ask for a CT scan of your neck. That is the best way to see it. I wish I could be of more help but I’m new to the ES game although not new to feeling like hell every day. Best of luck getting answers!
It does sound like it could be ES, yes. Here’s some links to posts/ info which you might find useful: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle Survey Results - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
So you can have a look at different symptoms & see the variety we have, but that there are also lots of common ones!
There have also been a few discussions you could look for by others who have had voice issues with ES/ pain talking or singing.
The styloids can also compress or irritate the Vagus nerve, which can cause anxiety amongst other symptoms, lots of members have noticed this.
Here’s a link to the Doctors List: US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
There are 3 doctors in Virginia although I’ve not heard of them mentioned recently. You could try to get a referral to one of those- as Oneday says, a CT is the best way to get diagnosed with ES. Would your family doctor refer you for a CT? It would need to be from the base of the skull down to the hyoid bone, & specifically requested that it’s to be evaluated for ES, i.e. that they check the length, width & angle of the styloids, & see if there’s any calcification of the stylo-hyoid ligaments too.
If you don’t find that any of the doctors on the list are treating ES now, let us know. If you’re happy to travel otherwise Dr Hackman in NC has done several surgeries recently, or Dr Cognetti or Dr Newman in PA are experienced too.
Let us know how you get on!
I’m glad you’re familiar w/ our forum & that it’s helped you potentially solve the mystery of what’s causing the symptoms you have.
Jules & one_day have both given you good information & the only thing I’ll add is that ES symptoms do come & go. It’s kind of odd that they can be really bad for a few days then just sort of disappear or minimize for a few days. Sometimes we can pinpoint things that trigger them but others there seems to be no rhyme or reason for why they flare up.
Being able to feel the styloid in your throat is a good indicator that you likely have ES. That is not something that happens for everyone. Sometimes the styloids grow straight enough down that they can’t be felt in the throat, & those people are often misdiagnosed by doctors who believe the styloid must be palpable in order for a person to have ES.
Getting the recommended CT scan will go far in helping you get diagnosed.
Hi Dillon,
I was diagnosed with ES a few weeks ago. My ENT ordered a CT scan with contrast and the radiologist and ENT found the ES. I have clicking in my throat also and trouble turning my head some days. I also have a chronic sore throat which I use Oral B lozenges for.
I am trying to get an appointment with an ES doctor in FL.
I wish you the best and hope you have more good days than bad.
Hi Dillon,
Welcome to the forum. I think everyone else has covered the first question (and it does sound similar to my experience too) but in terms of causing anxiety attacks I’ve never got to the bottom of it. I have anxiety and ES and both were diagnosed around the same time. I certainly had anxiety attacks when I felt a large lump protruding into my throat and freaked out but whether this was because I live with anxiety or amplified because of Styloid interfering with a nerve or something I don’t know and when I’ve spoken to doctors they’ve been sceptical of ES causing anxiety from a physical perspective. I feel though that the feeling of helplessness surrounding the symptoms potentially had something to do with triggering my anxiety (and depression). My diagnosis was about 4 or 5 years ago and I’ve learned to manage ES and the anxiety around it, I think probably just because I’ve gotten used to it. Most of the time now I forget I’ve got it, however (about once a month) I feel the styloid shifting and become aware of it and mentally prepare myself. When it clicks into a certain position, I feel lethargic, get brain fog, get increased feeling of derealisation, get a low mood and become more anxious. This passes after a day or too. I also notice if I pass a certain weight, my ES symptoms will flare up more and since losing a bit of weight it’s eased a bit. Everyone’s ES is different so I understand that for some people the styloid can be so intrusive it’s impossible to ignore and others may not ever notice it (I have it on both sides but only one side causes me problems) but hoping sharing my experience may offer some reassurance.
Hi ,
Dose sound like you have the more you use your throat and surrounding muscle the more it will get worse
If you’ve had longer than 2 years probably not going away try get some nerve block low doses of anti depression from your specialists it might help take the edge of enough to keep working
I was a forklift operator constantly moving neck all directions I had to stop working felt like was choking
All the time 6 months later I have been able to control
Pain but I have triggers like sneezing ,yawning ,
When sneezing don’t hold it in let it out don’t turn head when yawning little things like that help with pains
Hey , your symptoms are very similar to mine my friend . Unfortunately, it sounds like ES and yes the Anxiety is a big part of the fear of dealing with a barrage of symptoms as well as fear of the unknown. Also the styloid ligament irritates so many nerves it’s absolutely physically and mentally overwhelming. I Am newly diagnosed myself and I feel where you are coming from! looking down is a total game changer for the rest of my day as it makes my symptoms go bonkers. I do find that icing my styloid ligaments for 20 minutes every few hours seems to help a bit …
I’m glad you’ve found ice to be helpful. There is a symptoms & treatments category on the home page that has a lot of information about various things that have helped others. You could have a look at the posts there. Search results for 'symptoms ' - Living with Eagle
Thanks for the notes on anxiety! I have noticed that since I’ve gained 10-15 pounds I feel it more now. I need to get back down to 200 haha.
Is bad breathe another sign? I’m thinking it is because it pokes through my mouth…I also worry about the food and water I drink and if any of that could get stuck in that new opening inside my throat.
Thanks for that tip! I haven’t went back to the Doctor yet about it but I feel I will need to soon. Latest symptoms have been twitching feeling in eye/eyelash, shakiness in my right hand, weird feeling on right side of face when smiling, and me being afraid to do anything to jolt my body/neck (fearful it will cause a TIA or kill me if it is vascular). I don’t do anything quick anymore out of fear.
I think I am hesitant because I know I will have to have surgery when they find it and I don’t want to give up broadcasting for the time being/worry about the effects it will have on my voice. It’s such a rare thing that my girlfriend of three years that is in med school had only heard of it one time.
Is there any way to tell if your elongated styloid is compressing the nerve or artery?
A CT with contrast will show if blood vessels are compressed, but possibly only if your head is in the position which causes symptoms; it’s sometimes possible to get a CT done like that to see. Nerves don’t show with CTs; they can with special MRIs called FIESTA MRI, but very rarely available! It sounds like with your symptoms it could be nerves, the facial nerve or trigeminal nerve can be affected by ES & affect the face, eye, jaw area. The styloids can also affect the accessory nerve which can affect the shoulder & arm.
Usually people notice vocal changes from ES but surgery helps resolve that. It would be unusual for you to have a voice change as the result of surgery.
I feel a little alarmed that your styloid has poked a hole in your throat (or at least that’s what it sounded like from your post) & you haven’t run to get that styloid removed. Yes, having an opening in your throat like that can open you up to infection that could be far worse than facing ES surgery. Please get yourself an appointment ASAP to take care of your ES. The sooner the styloid is gone the sooner you’ll be recovered.
I tend to agree with Jules on the trigeminal /facial nerve involvement. I had the twitch myself in my eye lid and one side of my face. I had some pretty bad nerve jolts myself from my neck up to ear too. Its not uncommon for the vagus nerve (in throat) to be involved causing tachycardia/dysautonomia symptoms which can be diagnosed as anxiety when it is not. Chronic nerve pain doesn’t help anxiety and depression levels. I found steroid injections to be most helpful. If you don’t want injections, a round of oral steroids might calm down the inflammation.
If you are in broadcasting, you may want to consider external surgery. Some docs do one side at a time. My 2nd surgery I did have some tongue dysfunction which affected my speech but it subsided by about 10 weeks after surgery. There has been several singers on this blog and I dont recall any of them having voice issues after surgery. Jules you would know that more than me. Since your living is based on your voice, all the more reason to choose a surgeon with a high level of ES experience. You have a well of other patients here for help who have had this same surgery.
I have been thru alot of surgeries in my life, this surgery was a cake walk compared to others. I was down to one pain killer 2 days after surgery and out walking a mile. In fact, a couple months ago, I had a failed root canal and then emergency tooth extraction/bone graft that triggered major jaw problems (TMJ). It put me in the emergency room and I could hardly function for several weeks due to pain. I told my dentist, Id rather have my neck cut open that deal with this. Get yourself a good surgeon and you will breeze thru this.
ES can cause vocal changes, so you could find that this happens with time if ES isn’t treated, but it does vary depending on the angle of the styloids etc, & which nerves are affected…I can’t recall anyone having vocal changes from surgeries, but those who had it before have found it takes a while to settle. We’ve had some teachers & others using their voices alot for work who find it uncomfortable for a while after surgery.
Thanks everyone for the replies. I have an appointment tomorrow morning with the same ENT that diagnosed it as a blocked salivary gland the last time - hoping I can show him the actual calcified apparatus sticking through the back of my mouth lol. Any tips for getting a diagnosis? I would assume as long as he sees/feels it in my mouth I will get a CT done…it’s obviously not supposed to be there.
We suggest that people maybe print off any research papers which mention your symptoms (there’s links in the Newbies Guide Section), & if the ENT doesn’t listen then show them the research? As well as if they can feel it obvs…
Coincidentally, some of us have actually had blocked salivary glands alongside the ES- I only got diagnosed that way when they did scans for mine! I had a panoramic x-ray done as well as the scan for the stone & the x-ray showed it, just in case you’ve had one?
Hope that you can get a CT done; will be thinking of you & let us know how you get on!
Unfortunately had to reschedule this morning because I had an important work function - but on the bright side I have been looking at case reports of eagle syndrome and found something that seems similar to what I am dealing with…
