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Eagle Syndrome - Online Support Group

Glad to be here. First timer


#1

Hi. I’ve been reading the site and absorbing as much info as I can about ES. I believe I might have it. I’ve been to three ENTs and one gastroenterologist. They all think I’m nuts. I’ve read you guys might be familiar with that? :yum:

The worst headache ever started in August of last year. I couldn’t function. I had a hard lump, maybe a centimeter around? On my neck near the Adam’s apple. I went to see my PCP. Didn’t know about ES yet. Told her that for a week, clear fluid leaked out of my left nostril. CFL?!?! She totally dismissed that. She said the lump was a lymph node. She sent me for a thyroid ultrasound. She suggested a biopsy. Test came back, no problem. Blood work was negative. I forwent the biopsy and went to see an ENT. Foreshadowing: first ENT in 2000 performed a septoplasty and did something to widen my sinuses. Second ENT in 2015 told me I needed to have my sinuses laser trimmed to remove the swelling tissue. Neither even really listened to me.

Third ENT says everything looks good. Barium swallow, thinks it’s GERD. Tells me to change my diet. The node my PCP told me was a lymph node was wrong. It is calcified ligament according to the ENT.

The bone protruding out from under my right tonsil near my molars is so sore. The two bone protrusions behind my tonsils are making me gag. Food is still getting stuck. My right tonsil looks huge back there.
I have classic ES symptoms. BUT, I’m most worried by my headaches. They have never gone away. I bend my neck down and it is pounding so hard in my head!! Vascular involvement spooks me something fierce!

So, in the group’s collective wisdom, I pose some questions that I can’t seem to answer. If the styloid process is down under my tonsils, near my molars, what are those hard bony things behind my tonsils? Or, are the styloid processes both behind my tonsils? If so, what’s that pokey, painful bone down in my soft palate?

I studied so much anatomy of the head and I just can’t seem to find a bone that would be behind my soft palate near my molars. I’m long winded (I don’t talk often). Apologies for the rambling. Any advise or comment welcome. Thank you.


#2

The thing is everyone’s styloid processes are different sizes, & grow at different angles, so it’s not possible to say yiu can definitely feel it in ‘this place’…plus as you put your neck in certain angles it will move as your neck moves. Some members have felt theirs inside the mouth close to the tonsils, others on the outside of the neck under the jaw! I would guess that if you have elongated styloid processes as well as calcified ligaments it might be possible to feel hard lumps in different places? One indicator of possible ES is that if you push on the bony thing you feel the pain / symptoms worse…
There have been a few discussions about it before, have a look through the discussions using the search function- the magnifying glass icon- if you haven’t already.
Sorry if this isn’t very helpful! I would suggest that you try to get a CT, with contrast if you suspect vascular ES, & maybe a doppler ultrasound of your neck with it in the position you get the headaches if possible.
Best wishes!


#3

Hi, welcome!!!

I have family in the Chattanooga area! I hear there are some great ENT’s up there. Have you been able to call around and see which ones treat Eagle syndrome? If you are in fact a candidate for surgery? Like Jules said, the CT scan is the key to diagnoses.

Headaches are not easy with taking care of your family. How are you doing day by day? You’re path is just like most of ours. Keep going forward - you’ve gotten through a lot of the hard stuff already. I threw my share of acid reflux medicine in the garbage before diagnosis. Silliness.


#4

Hi, sewmomma. Thanks for the reply. I will have another look-see around the site. Tennessee is a lovely place to be. We had family here too, so it’s a no brainier. It is tough to keep up with domestics dealing with the headaches, for sure. I have not looked into surgeons here, but I did research one in Tampa, FL. That’s where my folks are. I see your recovery is going along well. All the best.


#5

Jules,

Thank you for the reply. I’m not understanding the anatomy of the area well, and it’s confusing me. I have read the many mentions of a CT with contrast on the site. Would a standard x-ray or CT not show anything? I’ve had both recently and have the x-ray disk with me. I also had a soft tissue and thyroid scan. I am going to find some of the software needed to take a gander at it. I have insurance but these tests are getting pricey! I didn’t know there were so many variations on position of the styloid. This is just the beginning for me. I will definitely look into calcified ligaments. Thank you for your suggestions. Best wishes.


#6

Yes, a regular CT would show the styloids, & they can sometimes be seen on x rays depending on the area shown- I was diagnosed by a panoramic x ray. A CT with contrast uses a dye to go through the blood vessels, so it can show if they’re being compressed by the styloids (vascular ES), so can be useful, but a regular CT is fine! Sorry if I’ve confused you!
Have you found the CT tutorial to get the 3D images? ( search for it using the magnifying glass icon) I’m a technophobe so can’t help with that but most people seem to be able to use it!


#7

You’re doing great! You found us, you’re learning the lingo - we are with you every step of the way. :heart:


#8

Thank you for the suggestion. I did look at the tutorial. I don’t yet have copies of my CT scan. I plan to check with the hospital on that next week. I was looking for freeware to read my x-rays in the hopes of seeing something before my next appointment. I believe I’ve found something that will work. I’m excited to see them. Sounds a bit morbid. But I’ve been suffering for years with this!! I’d love some confirmation, or alternate diagnosis. Anything but it’s all in my head! This site has proven invaluable to me so far. Even before I joined I was digging through and finding the most helpful information. Thanks again.


#9

Get your hands on those cd’s, reports, etc. every time you can. Those are yours!!! I got two copies of my disc - they did say I’d have to pay $10 for a 3rd :). A tip - hospitals bill insurance companies totally different than diagnostic centers bill. I could have walked into my hospital radiology department with my CT order the day I got it but I waited (it was hard) about a week for an appointment at a “diagnostic center” who billed as “office setting” therefore only costing me $40. The hospital would have gone toward my deductible meaning I would have paid for the $400 test in full. Ironically, the diagnostic center wanted payment for the test which annoyed me but they reimbursed me all but the $40 office visit co-pay when the claim was processed. I remember being tested during all this that I not only had to sleuth my way through what was going on with me medically but I had to watch my p’s and q’s too with insurance details, benefits, network providers, exlusions of my plan, etc., etc.! And I echo your appreciation for this community on here. :heart:


#10

Hi Red,

I totally concur w/ what Jules said regarding why you might be able to feel your styloid process &/or calcified ligament in different, unrelated places. I could feel my left elongated styloid under my jaw (from the outside), at the base of my tongue (in my mouth) & in my throat. My brain couldn’t wrap around how I could feel it all 3 places. It was crazy! I could feel my right one externally in the soft tissue just below my earlobe & just behind the bend in my jaw bone but not internally.

My early ES symptoms included choking on food. My son had to do the Heimlich maneuver on me one night during dinner. That was scary! After a second choking episode, I saw a gastroenterologist who did an upper GI to look at my esophagus. Everything was fine, of course. It was a couple of years later that I started having pain in the front of my neck which led me to find the lump under my jaw which in turn led me to see an ENT & receive my ES diagnosis.

ES is an “odd bird” in that there are so many different ways in which it manifests. Many are more common - throat pain/sensation of something stuck in throat, ear pain, jaw pain, neck pain, headaches, vocal changes. There are also a multitude of symptoms that can be unique to us individually & which even the diagnosing doctors will dismiss as being caused by something else. The proof comes when those symptoms subside after the styloid &/or s-h ligament are removed. Unfortunately, in bilateral cases, more often than not, the remaining styloid & ligament will also need to be removed for a person to be more or less fully relieved of symptoms. The second surgery is usually scheduled 3-6 months after the first so the body has time to heal between surgeries. That said, some surgeons will do bilateral surgery in one fell swoop. Based on our collective experience here, having two surgeries is a better way to go.

We are glad you found us & I will also say, we’re here for you no matter what.

:blush:


#11

Isaiah_40_31,

Thank you for sharing your story with me. This is such a welcoming forum. I really appreciate the kind words from you and sewmomma. My next appointment is the second week of March. I’m hoping to look over all my scans, and have the literature shared here and on the net. I plan to be armed for the next go around. I’ll keep reading this site and will definitely give an update soon. Best wishes.


#12

Hi Red,

Getting an ES diagnosis can be a journey. Do some research to find a skull-based surgeon in your area (some ENTs have this as a subspecialty). Skull-based surgeons operate in the area of the skull/neck where the styloids, s-h ligaments & hyoid reside & are more likely to be familiar w/ ES.

Have you looked at the US ES Doctors’ List yet? Here’s the link just in case you haven’t.

EaglesSyndromeUSDoctors August 2017.docx (38.4 KB)


#13

May I inquire with whom your appointment is in March? I thought if I sounded fancy I wouldn’t come across nosey :crazy_face:. Just wondering if it’s primary care provider or specialist. :heart: In any case, good luck and stay in touch :grin:!


#14

:slight_smile: I forgot how to do old skool smileys!! My appointment is with an ENT. She just called, as a matter of fact. She said the barium swallow test came back normal. I could have told her that. She has suggested a scope, which I’m not sure will help, really. I mentioned the hardened mass behind my tonsils and the bone under my right tonsil. She said she looked around before and didn’t see anything. I suggested she palpate around in there next appointment. So, I don’t have home internet. So I haven’t been able to dl a program to get the free x-ray software yet. Thanks again Isaiah_40_31, Jules and Sewmomma. I will keep plugging away, reading this site and all the wonderful and terrible about this thing. I hope your recovery journey is still going well. Best to everyone.


#15

Ok here’s hoping she’s familiar with Eagle syndrome. What happened to me in my mid-sized town is my ENT said “looks like Eagle syndrome but my knowledge is limited and I certainly can’t operate”. He said in his 25 years of practice he’s only had one other Eagle syndrome patient. Keep in mind she could be very inexperienced with this particular condition. And a scope was part of my first appointment at Emory too. Just paid for that puppy since it’s billed as a procedure, not under your office co-pay. Came to a couple hundred dollars but that ultimately made the surgery cheaper since I met the deductible.


#16

I understand how every one thinks your crazy
I am going through that as we speak. I have the dignose of eagles syndrome but I have been haveing issues lately like my stomach so bad I tell Drs it like they ignore me don’t even feel my stomach or even send me for any test to see if it could be something. I get the shake of the head and told well there’s things just happen like o am crazy. Even from my best friend who is in medical field telling me same as Drs. I really starting to think I am crazy and sick!!!


#17

I’m sorry you haven’t been able to have your surgery yet, Gods_blessing. I think doctors who know about ES like to stick w/ the more common symptoms & not think “outside the box” to consider other possibilities. You’ve had your stomach problems for a long time. I know several people on this forum have had stomach issues which completely resolved after having ES surgery. There are others who saw improvement but not total recovery.

I hope you’re able to get back on your surgeon’s surgical schedule soon so you can start healing. I can’t imagine how you’ve endured for so long with your symptoms. I’m still praying for you!

:two_hearts:


#18

Yes this past week my stomach got little worse. I did call the Dr in NC that was willing to do the surgery. They now saying that all these other symptoms have nothing to do with es only the part that you can’t swallow and was asked if we moved there yet I said no. I may have to find another Dr. My neck been swellen my husband saw it few weeks ago my chiropractor last week saw it and told me I went to gp and yes it is swellen he said it my thyroid. I been on thyroid meds for 21 years. He did ultrasound on it today funny the tech on the left side saw mass and called another tech in to see if she sees what she seeing she said yeah some mass outside of the artary. It was measure is 3.9 by 2.5 by 1.11 I won’t have results till next week Friday. I wonder if they saw that calcification poking through.


#19

Interesting thought on the mass being your styloid. It’s been growing for a long time. It could be affecting your thyroid. My first ES symptoms hurt in the area of my thyroid. When you talk to your surgeon or any surgeon about ES in the future, just stick to the symptoms you know are most common - ear, throat, neck, jaw, skull pain, etc. Anything beyond that & they start thinking you’re making things up & may just “blow you off”. We’re seeing that scenario more & more on this site. It’s very sad.

I will be praying that the mass is your styloid or s-h ligament & nothing else!

:sunflower:


#20

Thank You Soo much for the advice. I will stick to the basics!! The way those techs were shocked and questioning what they were seeing makes me believe its that styloid my blood work for thyroid is in normal range. I will keep you updated I get the results next Friday.