Best route to diagnosing Eagle Syndrome, help please

Hi there,

I would love some help, I have had two ENT dr's suggest Eagle Syndrome (or TMJ) to me but I have not been officially diagnosed, I think because some things don't seem to fit the bill. I'd love to know if there is a particular scan or xray I should be requesting that would show the problem. Here's what I've had so far, along with symptoms, will try to keep it short but it's been such a long and scary ordeal too!

About eight months ago, feeling of lump in throat, would feel better when I ate or drank though. Pain in lots of different areas started, predominately on right side (left side started soon after), and mostly just under the ear lobe about an inch down. Other pain (and I describe the pain as more of an on and off, radiating pain, that almost feels like an infection kind of pain), in different areas of the right side of my neck, under both sides of my chin, in the front of my throat area, just under my ear, inside my ear (feels like deep pain inside, again, like an infection), and a weird radiating pain on the lower portion of my cheek, just above my jaw bone, right side. I can't quite locate where the pain is even coming from half the time, but it's all there. Often pain in a weird area back in the throat (again, can't exactly pinpoint where). the pain is every day, somedays worse than others, and no specific time to when it gets worse or better, although I never seem to have much pain in the morning or at bedtime.

Here's what I've had done so far:

Two rounds of antibiotics as per ENT, neither helped. On Aleve, was told it would reduce inflammation, didn't help. Had a CT scan to look at swollen lymph nodes (felt a palpable node on right side, this is when it began to get scary), CT showed nothing. But I do not know if they were looking for Eagle, I think it was more focused on the lymph node. MRI of neck and head, a different ENT looked at it and said there was no elongation, so cannot be Eagle. Had biopsy of lymph node (negative, amen). Had full set of dental xrays, showed nothing. Went to oral surgeon, he mentioned Eagle, but first ENT said no elongation, so no Eagle.

I would LOVE anybody's thoughts. The last eight months have been terribly stressful for me, and I'm just feeling so stuck, not knowing where to turn next or what tests to ask for. The pain, as it stands, is bearable, but I would like to be able to put my finger on something, so that my mind could rest a bit on this, and I could work in some sort of direction. I'd love to know if these symptoms sound correct - I had heard that Eagle Syndrome is almost always just one one side, but I feel pain on the other side too.... and what kind of test you would ask your doctor for. Finally, I live in NJ so any recommendation to a doctor in the know would be so helpful, can't seem to find anything online in NY or NJ at all.

Blessings, thank you all!!!!

best route of diagnosis is a CT with contrast or a 3d CT scan, some have had success with a paranoramic xray from an oral surgeon.

Agree with Lively Cadaver. Styloids don't show up on regular CT scans. Tell them to look for the styloids also when they are reading it. A 3D scan is much better. A number of us have had longer styloids than what was seen on the CT with contrast.

You can have calcified styloids that aren't very long and still have issues. Also, most of us have had Eagles on both sides. If you can help it, try not to go back to any doctor who told you that Eagles can only be on one side.

Emma has a list of doctors that have experience with Eagles. Try to go to one of those if you can.


Right hediemt, for instance this is the picture of my recent 3d ct scan, sorry to post it so much guys, just seems relevant. This shows a clear picture of my condition, and the free floating small bone at the tip of the styloid I can only assume is attached to my styloid through a calcified ligament, that is my own speculation however. I requested a copy of my film on CD and this is just the full on view (left and right side are opposite here as I was laying looking up at the ceiling in this pic), I recommend you get a copy of your film when you do get a ct with contrast or a 3d ct scan like mine. Many doctors, even ENT's don't necessarily know what they are looking for. Good luck Julie.

The CD you are given after a 3d CT scan, allows you to manipulate the image left to right and top to bottom to give you and your doctor and idea of what is going on in your neck/head area.

Doctor's list in Excel attached. Dr. Cognetti is the most well respected in your region. He is in Philadelphia, Pennsylvania at Thomas Jefferson Hospital. There are others and we are sure some that are not known to us yet. Good luck, You probably have Eagles and it can be bilateral.

376-EaglesSyndromeDoctors.xls (37.5 KB)

Welcome to the relief center.

Wellllll! I hoped it would be only on one side. but nooooooooooo! just 6 years apart like kids. They is what they is. Like heidemt said (sort of) just don't let them tell you your pain is caused by something else. Or ask like what and flummox them with their invented non-answer. Cynical oh yeah!

My experience is that a CT will show the styloid but only the thinker more calcified part; the rest is very ghostly even on an x-ray but an x-ray can be moved and shadows seen. The CT shot is all you get. Your finger can reveal the actual length better. I went in for .9cm of styloid to be removed that's what the CT showed, my finger told me 3cm, I agreed with the doctor that the CT showed .9cm. When he opened me up it was 3cm and was he surprised. He removed the entire length down to what it should be. In my past experience a doctor might have just removed .9 cm just to be right.

I love my doctor. He listened. talked to me, knew precautions, consulted a previous doctor, knew what to do and did it.

I can appreciate a doctor that learns continuously-that's why its called a practice.

The panorax was the best direct, simple, cheap method and pretty darn definitive.

Can you feel it with your finger? I could on both sides before any scan showed it including x-rays. After 10 LA doctors in 1989 and 1990 (with the steroids, antibiotics, allergy tests, deviated septum diagnosis-with the nose job thrown in, this is Bev. Hills, all the symptoms, ear pain, vertigo, throat pain, etc.) in August of 1990 I described my symptoms to my orthodontist in Denver and what I could feel and he said you have ES and you need a panoramic x-ray to show it and he called a oral surgeon friend in LA he took the scan and by the week after thanksgiving it was removed. medicine can move quickly. If a tooth straightener knows it in 1990 why does no one know abut it now?

The one on my left was an utter mess over 15 years it was just successfully removed in September 2013. I have a sordid story like many here.

This can be yours with the right doctor!

My Reward of Patience---this look like .9cm? it was originally 6.5cm in 2002. Just chipped away surgery after surgery.


Do not let them blow you off-this sight can give you all the information they don't have. I do recommend a skull base surgeon though. Plus a vascular surgeon if the styloid has hit the carotid artery. Mine was mooshing against it.

Shawn

ok I don't proof read.

Oh also, during a neurologist appointment (of which I do not have a regular neurologist this was just scheduled by my primary care physician, I think because he put me on Neurontin) anyway I told her I knew my MRI was negative as eagles NEVER shows on a MRI, I explained that I needed either a CT w/ contrast or preferably a 3d CT scan, she said she would talk to the radiologist to make sure she explained exactly what area needed to be scanned. I love Dr. Judy White for that, it is because of her talking to that radiologist I believe that my pictures came through so clear. It wouldn't hurt to have the doctor submitting the request for your 3d CT to talk to the radiologist department and explain that you need your cervical neck area shown as well as your skull base because you are looking specifically for eagle's. I think if you go in there and be very firm that xrays are very difficult if at all possible to show eagles and that mri's never show eagles and that you would really apprieciate a 3d ct scan to show your eagle's that they will be very comfortable requesting one. Hope this all helps Julie. We tend as a community here to need to tell our doctor's what to look for, it is important to not come off arrogant (I am 27 with long hair lol and no medical degrees, cant be easy to be told what you need to do medically as a doctor by what looks to be a well educated long haired kid!) but be firm in knowing what you need from them, after all doctor's are there to help their patients and most are more than happy to do so espiecially when it sounds like you know exactly what your talking about.

That is a great shot! It belongs in a text book. It might be contiguous just not CT visible. But you don't any more radiation just removal down to 1cm. Can you feel this as they are very pronounced?

LivelyCadaver said:


Right hediemt, for instance this is the picture of my recent 3d ct scan, sorry to post it so much guys, just seems relevant. This shows a clear picture of my condition, and the free floating small bone at the tip of the styloid I can only assume is attached to my styloid through a calcified ligament, that is my own speculation however. I requested a copy of my film on CD and this is just the full on view (left and right side are opposite here as I was laying looking up at the ceiling in this pic), I recommend you get a copy of your film when you do get a ct with contrast or a 3d ct scan like mine. Many doctors, even ENT's don't necessarily know what they are looking for. Good luck Julie.

The CD you are given after a 3d CT scan, allows you to manipulate the image left to right and top to bottom to give you and your doctor and idea of what is going on in your neck/head area.

Mine only showed on x-rays because I had a friend who needed x-ray hours in medical school and spent 3 patient hours getting the best views and they were hard to see. But it could be seen very well in some. One x-ray set called a mastoid series showed it well also. Looks kind of like yours-but for me it had broken in many places and refused together so it looked like a finger bone with bulges at the knuckles.

I think we get our ENT degree here.

LivelyCadaver said:

Oh also, during a neurologist appointment (of which I do not have a regular neurologist this was just scheduled by my primary care physician, I think because he put me on Neurontin) anyway I told her I knew my MRI was negative as eagles NEVER shows on a MRI, I explained that I needed either a CT w/ contrast or preferably a 3d CT scan, she said she would talk to the radiologist to make sure she explained exactly what area needed to be scanned. I love Dr. Judy White for that, it is because of her talking to that radiologist I believe that my pictures came through so clear. It wouldn't hurt to have the doctor submitting the request for your 3d CT to talk to the radiologist department and explain that you need your cervical neck area shown as well as your skull base because you are looking specifically for eagle's. I think if you go in there and be very firm that xrays are very difficult if at all possible to show eagles and that mri's never show eagles and that you would really apprieciate a 3d ct scan to show your eagle's that they will be very comfortable requesting one. Hope this all helps Julie. We tend as a community here to need to tell our doctor's what to look for, it is important to not come off arrogant (I am 27 with long hair lol and no medical degrees, cant be easy to be told what you need to do medically as a doctor by what looks to be a well educated long haired kid!) but be firm in knowing what you need from them, after all doctor's are there to help their patients and most are more than happy to do so espiecially when it sounds like you know exactly what your talking about.



shaw said:

That is a great shot! It belongs in a text book. It might be contiguous just not CT visible. But you don't any more radiation just removal down to 1cm. Can you feel this as they are very pronounced?

LivelyCadaver said:


Actually the left side (pictured on right) I have had surgery on.... I thought I had a partial removal.... all my doctor did was just snip it in half...or 3. And usually it isn't the side with the most pain, although I feel maybe it is difficult to sense both sides being in pain at the same time in such a close knit area, it feels like my left side may hurt 1 day real bad near my hefty surgery scar up to and behind my ear. My right side frigging kills , it feels massive, particularly the end of the part that seems to be free floating, when I have pain I reach up right to the area where I feel it the most and I just know im touching that little piece, although that little piece on the picture feels huge in my neck. And in the past 4 months I can no longer crack my neck on the right side, any time I try and push it (because I know it gives about 15 seconds of complete relief when it pops) I get a sharp pain right between my T1 and shoulder blade. Sucks, but such is a life with eagles eh?

Doctors need to look up the word syndrome in the dictionary for the proper explanation. What we have is not call an elongated styloid process. It was ID'ed by Dr. Eagle and called a syndrome which is "a group of signs and symptoms that occur together and characterize a particular abnormality". Cancer is not defined as a syndrome as it is specific to an organ or organs. Syndromes such as this are symptoms that form a pattern. Irritated tissue caused by a protrusion of a foreign body. I first got diagnosed with foreign body syndrome-which was described to me as I feel like there is something in my throat--well there was.

Guys, this is all so wonderful, to hear your thought and suggestions, thank you!!! Do you mind if I ask a couple more questions?

Shaw said you could feel it with your finger. Where am I supposed to feel? I get bi-lateral aching pain that all over my neck, but it’s predominantly just about an inch
under my ear
On the right side, an that’s where most of the pain is. If I put my finger on it, it feels like a hard little piece, and harder than on the left (can’t feel anything on the left, actually). Is this the spot? If so I would be amazed, I had one Ent say it was a lymph node and another just say it was a normal bone. But that’s where it mostly aches, so…
What are your thoughts?

When the one Ent reviewed the MRI, and now I know they’re no good for seeing eagles- but he said that the one on the left looked a bit longer than the one on the right, and he brushed it off bc he said since most of the pain is on the right it wouldn’t make any sense, but Lively cadaver Said something about this with her surgery- that it was the other side that was longer?

Finally, do my symptoms seem to be in line with Eagle Syndrome? It seems they do…
Thanks to all who have taken the time, so glad I posted here, really.

I feel my styloid on the right side easily, one finger or two, about an inch or inch and a half down from behind my ear, it is easy for me to feel it now, as the left side styloid is now broken up from past surgery and it is easy to feel something when it isn't on both sides anymore. Also I am a him, but I AM FABULOUS, lol

Julie-GENTLY poke your finger of your opposite hand up towards your tonsil area or the tender area and you might feel the hard styloid.

Over the years I got so brave or stupid that rubbing the area alot helped relieve the pain by making me gag which opened up my eustasian tube. The styloid had pushed it shut causing no drainage and a huge pressure differntial between my eardrum. That is getting better but my surgeon said that since i ended up having the for 15 years some damage might be permanent on the left side. The right was done withing 1.5 years and is pretty symptom free.

or it was all in my head-oh yeah it was.

its the delay of removal that cause the most lasting harm.

yes it seems you have it symptomwise--there is no bone there naturally! ask what bone. If it wasn't there before where'd it come from. PLUS if you have a lymphnode that hard you got something also.

The excuses run like water.

my right was 3.5 cm when removed my left was 6.5 cm when removal was attempted.

OK Mr. Fab. hehe. mine broke twice ar various times but refused together apparently like a normal borken bone would. I wish I could post my xray that shows it healed together again but they don't scan well. The CT is very limited.

I have to say one panorex caused them to remove my styloid in 1990---we spend so much effort to get these doctors to act--CT's, MRI's, x-rays, etc. What do we need to do to convince them when ultimately it is so simple.

Also I need to add as this first occured, i had massive swelling and when the swelling went down the bone was left. That's why initially in 1989 it was thought to be an infection--it was the calcification irrtating all the tissue and when the area got used ot it the swelling went away and the pain stayed-a 25 year theory of mine.

LivelyCadaver said:

I feel my styloid on the right side easily, one finger or two, about an inch or inch and a half down from behind my ear, it is easy for me to feel it now, as the left side styloid is now broken up from past surgery and it is easy to feel something when it isn't on both sides anymore. Also I am a him, but I AM FABULOUS, lol

Lively C

I read your bio and i agree that symptoms will stay. But in 1990 I had it removed on rightside extraorally and all my symptoms were gone when I woke up.

Its the delay and the nerve damage that occurs do to the delay-the nerve sheath gets damged and the surrounding tissue too.. Or having the doctor remove you hyoid bone by mistake! Yes it can happen and did. Another oops.

The main symptom is denial of ES by doctors.

Thanks all. I don’t feel anything hard by my tonsils, but I may not be feeling for it correct or maybe it’s just not there- I recall one Ent that had first suggested eagle syndrome feel right in that area too and didn’t seem to find anything.
Ok, thanks again.

Julie- don't use their finger diagnosis. I've had many doctors dig around and never feel it. You would be the best judge to see where it is the most tender. Mine felt like a pencil between my jaw and my pharynx.