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Eagle Syndrome - Online Support Group

Can we talk symptoms?

Please explain in detail if you have ear pain, neck pain and or throat pain and specifically what the pain feels like. I have been told that the type of pain matters to the diagnosis. I would like to know if my son's pain is similar to anyone here who knows they have Eagles. I do believe he has Eagles, but I need to rule out skepticism by doctors from your feedback. Your experience is valuable to me. Thanks!

Ear pain - all the time; worse after eating; sometimes daggers deep in the ear, sometimes pain behind the ear & clicking in the ears

Throat Pain - sandpaper sensations in the front of the throat (as opposed to the back of the tongue and throat) sometimes dagger like pain in the throat too

Neck Pain - behind the ear down into the neck; sometimes cracking of the neck.

Thanks in advance for posting your symptoms!

My symptoms are pain 24/7.

No throat issues but sometimes choke on water often.

I have ear ringing and filling and pain. I can put my finger and pull or press on my under jaw for a sec of relief.

I have pain from in front and behind my ear down that jaw line to my neck and felt in shoulder on the one side.

I have not TMJ clicking. Hard food is awful to eat and hurts worse. I can also feel something different in my neck and jaw area.

This is so rare. Get a diagnosis with a good three d scan and panoramic x ray into the the hands of a center that treats this. Mayo Clinic in AZ or University of Kentucky. I live in SC and have to go to Kentucky. There is no one at any of the hospitals here like Duke or MSUSC that has seen this. It is rare. Go to the ends of the earth and do not let your child be a guinnue piglet.

He is also young to have. The age range is 30-50 and more ladies get than males. Maybe it is a TMJ and other issues problem. Clicking. That is why you need to go somewhere like a teaching hospital that has maxo facial that can rule out ES and treat if it is.

Hi Ear Mom,

I have pretty much the same ear pain as your son. It feels like I need to pop them (like you get when taking off & landing in a plane). The ear pain itself is constantly there, dull pain that often intensifies feeling like I have a really bad ear infection. Nerve pain like.
I do get neck pain, usually on my right side & comes down from behind ear.
I don’t get throat pain particularly although have constant issues with enlarged glands/tonsils.

I have many other classic symptoms too but like So Done mentioned, the key seems to be a CT looking at the styloid process etc.

Hope you & your son get the right help very soon,

Best wishes
Michelle

Michelle - if you haven't already, please check out geniculate neuralgia. That has also been suggested for my son because of his ear pain. Just wanted to share.

Thanks Ear Mom, I will definitely look it up but am confident doc’s ES diagnosis in my case is correct due to the other symptoms I have & CT scan. Fingers crossed I don’t have 2 things :o

Dearest Ear Mom, Bless you and your son! So sorry he is going through so much at such a young age? I have bilateral Styloids that pretty much meet at my Hyoid bone. I have a slew of symptoms; earaches like your son’s, I actually went to the ER as I had YAWNED too wide and I heard a cracking sound in my ® ear and I would have sworn blood was gushing out of it as much as it hurt! I also have ringing in my ears and a constant(air escaping sound). When I get those ear aches I get the pain and it does travel down my neck! My biggest problem has been Tension Migraines that never go away! I am an older female I’ve got lots of other diagnoses that aren’t helping the Eagle’s Syndrome. Terrible pain behind my ears and then starting to have problems swallowing and food is getting stuck in my throat! It’s getting more difficult to even open my mouth large enough to take a bite of a sandwich? Both my Styloids Ligaments have Calcified as well. I too have a sore throat in the back of my throat. My tongue hurts in the back & I’m having some swallowing issues. I’m going to go for the surgery as soon as I can schedule it into my life. I hope this helped some? This is a great sight for Support & Information. I’m a RN so I have really got into the research but was so grateful to find this site!

Michelle,

It is unlikely that you have 2 things going on, however, I was told by a doctor who specializes in neuralgia that sometimes when the signals are upsetting a nerve for a long period of time, the nerve gets "fried" and if symptoms persist, it just needs to be cut. The nerve is the Jacobson's nerve or tympanic nerve and can be cut through the eardrum.

Michelle said:

Thanks Ear Mom, I will definitely look it up but am confident doc's ES diagnosis in my case is correct due to the other symptoms I have & CT scan. Fingers crossed I don't have 2 things :o

Crystal - I feel for you as well. It is impossible to live or work with migraines so I hope you get relief and surgery very soon. Thank you for sharing. The ear pain that goes along with Eagles is not well known by the medical professionals I have seen so I needed to hear from other Eagles patients. They don't communicate this information to us, perhaps because it is so varied from patient to patient.

Crystal said:

Dearest Ear Mom, Bless you and your son! So sorry he is going through so much at such a young age? I have bilateral Styloids that pretty much meet at my Hyoid bone. I have a slew of symptoms; earaches like your son's, I actually went to the ER as I had YAWNED too wide and I heard a cracking sound in my (R) ear and I would have sworn blood was gushing out of it as much as it hurt! I also have ringing in my ears and a constant(air escaping sound). When I get those ear aches I get the pain and it does travel down my neck! My biggest problem has been Tension Migraines that never go away! I am an older female I've got lots of other diagnoses that aren't helping the Eagle's Syndrome. Terrible pain behind my ears and then starting to have problems swallowing and food is getting stuck in my throat! It's getting more difficult to even open my mouth large enough to take a bite of a sandwich? Both my Styloids Ligaments have Calcified as well. I too have a sore throat in the back of my throat. My tongue hurts in the back & I'm having some swallowing issues. I'm going to go for the surgery as soon as I can schedule it into my life. I hope this helped some? This is a great sight for Support & Information. I'm a RN so I have really got into the research but was so grateful to find this site!

Iso Done, n SC too, just diagnosed even more frustrated any advice on what to do or who to see? Have you found any luck yet?



So Done said:

My symptoms are pain 24/7.

No throat issues but sometimes choke on water often.

I have ear ringing and filling and pain. I can put my finger and pull or press on my under jaw for a sec of relief.

I have pain from in front and behind my ear down that jaw line to my neck and felt in shoulder on the one side.

I have not TMJ clicking. Hard food is awful to eat and hurts worse. I can also feel something different in my neck and jaw area.

This is so rare. Get a diagnosis with a good three d scan and panoramic x ray into the the hands of a center that treats this. Mayo Clinic in AZ or University of Kentucky. I live in SC and have to go to Kentucky. There is no one at any of the hospitals here like Duke or MSUSC that has seen this. It is rare. Go to the ends of the earth and do not let your child be a guinnue piglet.

He is also young to have. The age range is 30-50 and more ladies get than males. Maybe it is a TMJ and other issues problem. Clicking. That is why you need to go somewhere like a teaching hospital that has maxo facial that can rule out ES and treat if it is.

I've had a lot of ear pain- aches and stabbing pains- and feeling of fullness in my ears, both of which have improved (but not completely gone) with surgery. Aching glands and slight sore throats as if I'm coming down with a cold, on and off for days. I also had a lot of pain with my tongue, moving it etc. so I couldn't eat anything chewy. I also have neuralgia (constant aching rather than the sudden pains) along the glossopharyngeal and trigmenial nerves. If you look through the research section, there's some good articles which go through all the possible symptoms/ effects depending on which angle the styloid is at. Also if you look in the discussions section, one helpful member- Ang- did a survey of symptoms people have, which is worth a look. The results were interesting, check out the link:

http://www.livingwitheagle.org/xn/detail/6309075:Topic:33668.

Hope it works, if not search for the post looking for 'survey of symptoms ' in the discussions. Doctors are sceptical because if they've ever heard of ES or look it up, it's usually only the 2 most common symptoms of pain swallowing and pain turning your neck which are known about. It's worth perhaps printing out some articles etc to take to show doctors.

Hope your son gets somewhere- but scans are the best way to find, out if they can be done!

Crystal i have the same as you it stops me from talking. I have calcified ligaments both sides i think one side is rubbing off the hyoid bone. Did u have surgery yet? How do you know which side to get done first?

July123,
The surgeon usually makes the call as to which side is operated on first. He/she will base it on his/her opinion of which side is probably causing the worst symptoms. My left side caused the majority of my pain, however, my right side caused more serious symptoms w/ my heart & blood pressure. Based on the angle of my styloids, my surgeon removed the right side first & left me w/ the pain. It was such a relief to be done w/ heart palpitations & blood pressure issues that I ultimately had no regrets in dealing w/ the pain for a few more months so the first side could heal before surgery #2.

@July123 My surgeon let me pick since both side were almost equal in length and each causing different issues - while both pressing on my ICA & Jugular veins. I picked the headache side and waited on the side poking into the middle of my throat. I have had one out and I’m having the next out in 2 weeks. Hope this helps.

Hi Crystal.

I have been suffering for more than 5 years of sever vertigo, trigeminal neuralgia, vestibular damage, vestibular damage. There is an unsettling feeling when you can not open your mouth to put food in.
Seven months ago I was diagnosed with Eagle syndrome. Now I could find some answers…maybe.
I have met a surgeon. I will be having two surgeries, one each side, relieving and terrifying at the same time.
The pain is overwhelming sometimes. Trying to live a normal life is exhausting.
I have developed some anxiety.

Eagle syndrome also effects members of your family amd co workers. They are dealing with the charges in us, and there are lots. Chronic pain is awful.

Good luck to you in your journey.
Emery.

To Emery and Seamom- I hope that your surgeries are successful and that you heal well!
Emery- there’s lots of info on here about what to expect- you can search for a topic in the past discussions using the magnifying glass icon top right of the screen- so you can read up and pick up tips to help you post-op if you need it. As you can see from seamom’s post, so many of us opt for 2nd surgery so be reassured that the surgery is generally worth it!
July123- as you can see from other posts, it’s often a long and frustrating journey, but don’t give up, and keep trying all options!

Thanks seamom. Both sides are giving me different symptoms too. But one side stops me from talking. Its not that i loose my voice its a physical feeling when i talk. I have severe anxiety about anything medical and dont know why god picked me to have this! It has affected my family they have all walked away from me. I just barely have my husband and two kids which im finding very difficult to look after them. I just have to look at them and i cry. Its a living nightmare. Because im in Ireland and only have one hope of a surgeon to help me its very scary. Im asking all about the surgery and he probably wont even do it. I dont want to have the injections or medication to cover this up. This is all very isolating. Seamom how are you after the first side done and is the otherside feeling worse now? I think my both sides are somehow connected lile a chain because when one side bothers me the other doesnt its never both together. Maybe one side pulls on the other. I dont know how im going to explain all this to the ent next week!

@July123
After the first surgery many of my severe symptoms on the left side are gone. Like several other members have posted now my right side is acting up more. I have always had a deep inkling that my C1 [Atlas] was pressing towards one side or the other and at times I would manipulate it myself to relieve some of the pain. It felt to me like the C1 would trap the vascular system &/or nerves up against the styloid. However, no doctor has ever confirmed this though.

My surgeon said hes going to do both sides at tge same time. Ive never heard of this?

Some members have had both sides done at the same time, and survived to tell the tale! But a lot of doctors won’t because of swelling- the doctor I saw said ‘it would be too much’ to do both at once.

Ok last question i promise! I have a rubbing straining feeling down at the side of my hyoid bone when i talk much or raise my voice. Its one of my worst symptoms. I just dont see of anyone else with this problem and im wondering maybe its not to do with eagles but something like hyoid bone syndrome aswell. On the scan on yhe other side the ligament is joined to the hyoid and i dont feel anything there but on the other side its not joined but nearly and it affects my talking like the muscle siezes up against it. I just need to be sure if i go for the surgery that all my symptoms are from eagles and not something else that i could be left with after surgery. Its not my voice its a physical feeling when i talk. Anyone else have this?