Eagle's Syndrome

Posted by Jackie, Volunteer Mentor @travelgirl, Apr 25, 2018

My son was diagnosed with Eagle Syndrome. It took years of him complaining to Dentists and Doctors before it was diagnosed. Finally a Dr referred him too the Cleveland Clinic. They were able to diagnose it, but didn't have a Dr on staff that could offer any advice. Being that Eagle syndrome is so rare less than 4% percent have this condition and of that 0.16% show symptoms.
We found a couple of Dr's who have treated the condition. But they claim the surgery is horrible they found it creates more issues. That to hold off as long as a person can.
It is very painful at times for my son. He said right now, he can feel the Styloid pressing on his Hyloid bone.
Does Mayo Clinic have any studies or Dr's that deal with Eagles Syndrome?

Liked by de9g

I have posted several times here and I am so grateful for the support.

Last night walking home from the train I felt my neck muscles on the side towards the back spasm and tighten. All at once it become difficult to swallow and when I did the poking pain from the styloids felt like sharp nails – on both sides. The spasm felt like like it was pulling my head down into my shoulders. The spasms stopped but even today I can only best describe my neck pain as feeling like whiplash – very weak in neck and arms with knots painful to the touch.

Has anyone else had spasms? I am afraid to tell my ENT. Afraid to be send me off to yet another specialist. I'm home today from work using alternate heat and ice.

Also, I have often thought which came first – some sort of inflammation (like the initial cold I had back last June that started all of this). Inflamed neck that tightens the neck and then ES symptoms begin then never go away. Or is ES the initial cause of all of this? Thank you.

REPLY
@brooklyngirl

I have posted several times here and I am so grateful for the support.

Last night walking home from the train I felt my neck muscles on the side towards the back spasm and tighten. All at once it become difficult to swallow and when I did the poking pain from the styloids felt like sharp nails – on both sides. The spasm felt like like it was pulling my head down into my shoulders. The spasms stopped but even today I can only best describe my neck pain as feeling like whiplash – very weak in neck and arms with knots painful to the touch.

Has anyone else had spasms? I am afraid to tell my ENT. Afraid to be send me off to yet another specialist. I'm home today from work using alternate heat and ice.

Also, I have often thought which came first – some sort of inflammation (like the initial cold I had back last June that started all of this). Inflamed neck that tightens the neck and then ES symptoms begin then never go away. Or is ES the initial cause of all of this? Thank you.

Jump to this post

@brooklyngirl
Yes i have had extreme spasms in the face, jaw and neck, which at certain times (even weeks long) seemed permanent without stop at all. The problem is the ENT doesnt associate the Spasms with Eagle Syndrome no matter what i tell them. They send you to the Neurosurgeon and Neurologists and they try to identify another cause for the spasms because they have no knowledge whatsoever on Eagle Syndrome. This leads both sides looking for different causes of the complications and inevitably dismissing Eagle Syndrome rather than addressing it or attempting to treat it! At least that has been my experience. I do believe the spasms are caused by nerve damage/interactions in the area around the Styliohoid process which in my case and maybe yours also results in muscle degeneration and thus muscle spasms. The whole timeline those things happen in is a mystery to me but your symptoms sound dead on with what i experienced midway through my problems. Muscle degeneration in the neck jaw and face could also explain the weakness in the neck. Anyways….. Im no doctor. Just dealing with the same issues and have been provided some answers (proffesional oppinnions) to different aspects of the complications. I will definitely pray for improvement and for the Lord Jesus Christ's healing hand to be with you. I hope my experiences/knowledge may hopefully help you even in the slightest. May GOD Bless You,
elimpert96

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@elimpert96

@brooklyngirl
Yes i have had extreme spasms in the face, jaw and neck, which at certain times (even weeks long) seemed permanent without stop at all. The problem is the ENT doesnt associate the Spasms with Eagle Syndrome no matter what i tell them. They send you to the Neurosurgeon and Neurologists and they try to identify another cause for the spasms because they have no knowledge whatsoever on Eagle Syndrome. This leads both sides looking for different causes of the complications and inevitably dismissing Eagle Syndrome rather than addressing it or attempting to treat it! At least that has been my experience. I do believe the spasms are caused by nerve damage/interactions in the area around the Styliohoid process which in my case and maybe yours also results in muscle degeneration and thus muscle spasms. The whole timeline those things happen in is a mystery to me but your symptoms sound dead on with what i experienced midway through my problems. Muscle degeneration in the neck jaw and face could also explain the weakness in the neck. Anyways….. Im no doctor. Just dealing with the same issues and have been provided some answers (proffesional oppinnions) to different aspects of the complications. I will definitely pray for improvement and for the Lord Jesus Christ's healing hand to be with you. I hope my experiences/knowledge may hopefully help you even in the slightest. May GOD Bless You,
elimpert96

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I now have spasms also. Not lasting very long, but unexpected and definitely unwelcome. What does happen frequently is the twitching right eye, the pain on the right side of my neck/jaw/head and the weakness in my right arm and pinkie/ring finger.
Totally agree doctors are in way more into maintenance than operating on this condition. If maintenance could "pause" progression it wouldn't a bad idea, but symptoms keep ramping up and docs adding meds…
Anyone having dental issues due to extreme dry mouth?

REPLY
@elimpert96

@brooklyngirl
Yes i have had extreme spasms in the face, jaw and neck, which at certain times (even weeks long) seemed permanent without stop at all. The problem is the ENT doesnt associate the Spasms with Eagle Syndrome no matter what i tell them. They send you to the Neurosurgeon and Neurologists and they try to identify another cause for the spasms because they have no knowledge whatsoever on Eagle Syndrome. This leads both sides looking for different causes of the complications and inevitably dismissing Eagle Syndrome rather than addressing it or attempting to treat it! At least that has been my experience. I do believe the spasms are caused by nerve damage/interactions in the area around the Styliohoid process which in my case and maybe yours also results in muscle degeneration and thus muscle spasms. The whole timeline those things happen in is a mystery to me but your symptoms sound dead on with what i experienced midway through my problems. Muscle degeneration in the neck jaw and face could also explain the weakness in the neck. Anyways….. Im no doctor. Just dealing with the same issues and have been provided some answers (proffesional oppinnions) to different aspects of the complications. I will definitely pray for improvement and for the Lord Jesus Christ's healing hand to be with you. I hope my experiences/knowledge may hopefully help you even in the slightest. May GOD Bless You,
elimpert96

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Hi Elimpert96, Thanks for responding and for your prayers. My muscle spams dont last long but the residual pain sure does! I have a call into a surgeon in Philly for a second opinion – Dr Congnetti is known for ES surgeries and has a small publication on it.

REPLY
@de9g

I now have spasms also. Not lasting very long, but unexpected and definitely unwelcome. What does happen frequently is the twitching right eye, the pain on the right side of my neck/jaw/head and the weakness in my right arm and pinkie/ring finger.
Totally agree doctors are in way more into maintenance than operating on this condition. If maintenance could "pause" progression it wouldn't a bad idea, but symptoms keep ramping up and docs adding meds…
Anyone having dental issues due to extreme dry mouth?

Jump to this post

HI De9g. I dont have dry mouth but sometimes severe tooth pain and sensitivity. Is your dry mouth all day or only in the morning? If only in the morning maybe you sleep with your mouth open. It would be good to get the mouth rinse for dry mouth to protect your teeth. I was at my dentist yesterday for some dental work now my third visit in three weeks. He did not know of ES but he researched it and knows that the it may be a part or or all of what is causing the pain. I may need a root canal but he said "lets wait" until the ES gets resolved (surgery). He understands!!!

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@brooklyngirl

HI De9g. I dont have dry mouth but sometimes severe tooth pain and sensitivity. Is your dry mouth all day or only in the morning? If only in the morning maybe you sleep with your mouth open. It would be good to get the mouth rinse for dry mouth to protect your teeth. I was at my dentist yesterday for some dental work now my third visit in three weeks. He did not know of ES but he researched it and knows that the it may be a part or or all of what is causing the pain. I may need a root canal but he said "lets wait" until the ES gets resolved (surgery). He understands!!!

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My dry mouth is all of the time. I can't know because I am sleep, but never heard comments of mouth open sleeping. Mouth rinses only work five min or less. Dentist is baffled! I go every six month except past two years broke a tooth I'm between and had to go back. I can't make enough saliva to keep teeth healthy. Dentist says I can see you take great care of teeth so I cannot understand why you have so many problems. Even sleep with guard to protect teeth from excess wear on right side. Just read about a flouride mix Dr can prescribe. Will ask tomorrow when I go in for repair on broken tooth. Thanks all for support and suggestions!

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@brooklyngirl

Hi Elimpert96, Thanks for responding and for your prayers. My muscle spams dont last long but the residual pain sure does! I have a call into a surgeon in Philly for a second opinion – Dr Congnetti is known for ES surgeries and has a small publication on it.

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Thank You Brooklyngirl, The pain is challenging, but just try to remember the bright side. There is always someone else worse off. Pain is only part of the symptoms and complications that can arise with this condition as I know you are well aware of. I do feel for you though as my pain never seems to go away completely. Hopefully (As i believe happened with me) the pain receptors in those area's begin to numb down the pain in time. They get so used to it that eventually the pain isn't as acute and becomes a little more tolerable…..Hopefully. I will prayer for this very thing for you. Anyways, thank you so much for your reply and for the surgeon's info in Philly. I'm in Baltimore, so def within arms reach! As always, I'll keep you in prayer and May GOD Bless you and keep you and in his good and perfect time and wisdom, May he finally heal you and restore your health. Stay strong! Elimpert96

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@de9g

My dry mouth is all of the time. I can't know because I am sleep, but never heard comments of mouth open sleeping. Mouth rinses only work five min or less. Dentist is baffled! I go every six month except past two years broke a tooth I'm between and had to go back. I can't make enough saliva to keep teeth healthy. Dentist says I can see you take great care of teeth so I cannot understand why you have so many problems. Even sleep with guard to protect teeth from excess wear on right side. Just read about a flouride mix Dr can prescribe. Will ask tomorrow when I go in for repair on broken tooth. Thanks all for support and suggestions!

Jump to this post

@de9g
You may have either slight muscle degeneration which you haven't yet noticed in and around the glands in your mouth (which i believe are directly under the front of the tongue) and this is in some way pinching/inhibiting their normal operation, or you may have have nerve issues which are controlling those glands. Although I personally have not suffered from the dry mouth I have lost a lot of the tissue and muscle directly under the left side of my tongue so I suppose that could be one more problem I have to look forward to in the future… Anyways i would definitely see a neurologist because if you dont think you've lost any of the physical structure surrounding your ENT then i believe it has to be neurological. Just my opinion.
I will pray for you though and I can promise you that there's a lot of power in prayer! Other than that, I recommend sucking on something throughout the day (mints, cough-drops, etc.) to try and keep the glands in your mouth more active and combat the dryness. Hang in there, May GOD bless.
Elimpert96

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Thank you! I am a great believer in prayer and I pray every time I read a post! Today was a very confusing day because I get results of the 2nd recent scan and it seems to contradict previous scans. Is 60mm or 2.4 inches considered elongated? I'm seeing 2-3 inches is normal, but 20-30mm is normal. These numbers do not match when converting so which is the normal range? Thanks!

REPLY
@de9g

I now have spasms also. Not lasting very long, but unexpected and definitely unwelcome. What does happen frequently is the twitching right eye, the pain on the right side of my neck/jaw/head and the weakness in my right arm and pinkie/ring finger.
Totally agree doctors are in way more into maintenance than operating on this condition. If maintenance could "pause" progression it wouldn't a bad idea, but symptoms keep ramping up and docs adding meds…
Anyone having dental issues due to extreme dry mouth?

Jump to this post

@de9g
As for the facial spasms, mine are very severe. The twitching of the eye too! You need to see a neurologist which can order an EMG FACIAL NERVE CONDUCTION STUDY WITH A BLINK TEST. This will help to establish which nerves are responsible as it tests what exactly is causing the eye twitching and spasms. That's what they finally ordered for me. I have yet to go mine as my initial app. was cancelled due to inclement weather. This test will also hopefully give you the evidentiary proof and report you need to establish that you actually have Eagle Syndrome and nerve dysfunctionality at the styliohoid proces (where those nerves pass through), which we all know is most of the time the hardest and most frustrating step in getting help. If you can get a Dr. to accept that you have Eagle Syndrome then your halfway there.

I know that the spasms at least for me are very painful and more than the acute pain they are absolutely unbearably uncomfortable. It seems they get worse at least for me with any type of physical touch to the face especially the nerves at the rear base of the Jawbone. They're kind of on the bottom more towards the inside of the jaw bone. When those get touched my whole face goes crazy but then again even the slightest touch to my cheek will cause my facial spasms to increase tenfold in intensity.
Try to sleep laying flat on your back, looking straight up without putting any pressure on either side of your face. Hopefully at some point the nerves will either heal themselves or just altogether quell the spasming. Another thing that tremendously helps my facial spasms are muscle relaxers. And Prayer! Never underestimate the power of prayer. I don't want to use this platform to preach but I feel compelled by the Lord to say what's on my heart…..that hopefully you are saved and born again and therefore have full access to God and the power of Prayer, and if you're not then I will pray earnestly that you do get saved. It's only between you and the Lord Jesus Christ! Please don't confuse anything I'm saying about a relationship with God with religion. Because I will not preach to anybody about this Fallen religious world that we live in. That's not what I'm speaking about. I'm speaking about a personal relationship with GOD/CHRIST! Sometimes God allows us to go through these hardships in our lives because when everything is going great we have no need of him, We don't need to call on him for anything. Least of all salvation because we think we have everything we need. Sometimes God has to remind us that he's in charge and it's not to punish us but because he loves us and doesn't want any of us to miss out on eternity. We have free will, The payment for our salvation was already made for us but we have to choose and freely accept it.

Sorry if I offended you. Or anyone else with any of this but it is with the deepest love of my heart that Ive said these things. I will most definitely keep you in my prayers. @elimpert96
g+mail for personal. May. GOD bless you and heal you! I'm Always here to talk @ above mail and that goes for anyone else reading this and struggling with questions of faith etc.
Elimpert96

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@travelgirl

I would just like to say with all of my heart for everyone here talkin about this rare disease/condition, THANK YOU TRAVELGIRL!!! If you had not written of your son, I know that I for one would not have found this site and thread and in turn many of the answers that I needed. So for myself and perhaps I think many others, thank you @travelgirl for being such a great mother and for always even to this day being there with an answer!!!!!!! Thank you @travelgirl!
elimpert96

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@de9g

Thank you! I am a great believer in prayer and I pray every time I read a post! Today was a very confusing day because I get results of the 2nd recent scan and it seems to contradict previous scans. Is 60mm or 2.4 inches considered elongated? I'm seeing 2-3 inches is normal, but 20-30mm is normal. These numbers do not match when converting so which is the normal range? Thanks!

Jump to this post

@de9g
The most important thing I believe for you to look at is how much longer/ over calcified the one side is than the other non symptomatic side (unless you have an extremely rare case of both sides being elongated and symptomatic). But yes from what i have read i dont know how yours could be 60mm. This in my opinion is a miss measurement/calculation by whoever analyzed the scans. They may have noted at 60mm the length of the tendons/ligaments that attach to the stylo process connecting it to the top and bottom of the jaw.
These tendons/ligaments cause most of us with Eagle Syndrome to have jawline toothaches in the 3rd-5th molar range that seem underneath the teeth themselves. This is because the tendons/ligaments attach there on our jawbone below/above our teeth and eventually become strained and act abnormally due to the irregularity in the stylo 's length/over-calcification.Thus these tendons and ligaments begin to abnormally pull or put pressure on the jawline in the area usually associated with the 3rd, 4th, and 5th molars. The stylo process is the anchor point for these tendons which I believe controls a large portion of our Jaw movement (mainly lateral movement i believe)

Sorry to rabbit trail on you de9g but maybe this
Info will be useful to all of those making and paying for dentist appointments and not finding anything wrong. As always im praying for you. May GOD give you the answers you need!
Elimpert96@gmail

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@elimpert96 Awww.. You are so kind..
I am so happy this feed is helping so many.
That was what I wished for.
I also pray that each person finds relief with the least invasive surgery possible.

God Bless you all.
Jackie.

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I have eagles syndrome as well. I always had a sensation like there was something in my ear. So I would always stick my finger in my ear and wiggle it around or lick the back of my throat (if that makes any sense) to try to make it go away. To no avail obviously. It started to rapidly progress from my early 20s to early 30s though. Hence why I have the diagnosis now. Headaches that would come in bursts lasting anywhere between a week to a month or more at a time coupled with ringing ears, my teeth hurting, my ears hurting, a lump in my throat that never goes away, spears in the back of my neck the base of my head area. Just so much pain. And after days upon days of this of course it radiates and encompasses almost the entire top half of my torso and head at this point. It's maddening. I'm wondering if anyone else gets headaches from these??? These are 3d renderings of CT scans I had. The neurologist I go to right now tells me they can't grow because I'm an adult. And I think she's wrong as hell because mine have progressively gotten worse symptomatically since my early 20s. I'm 32 now. She just keeps throwing pills at my head, worst part is they don't work most of the time anyways. haha. I wish someone would snap these things off so I didnt spend 3/4 of my life in a crippling headache…. I can't even play with my kids half the time. Eagles syndrome is a quality of life ruiner… that's my opinion.

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@brooklyngirl

I have posted several times here and I am so grateful for the support.

Last night walking home from the train I felt my neck muscles on the side towards the back spasm and tighten. All at once it become difficult to swallow and when I did the poking pain from the styloids felt like sharp nails – on both sides. The spasm felt like like it was pulling my head down into my shoulders. The spasms stopped but even today I can only best describe my neck pain as feeling like whiplash – very weak in neck and arms with knots painful to the touch.

Has anyone else had spasms? I am afraid to tell my ENT. Afraid to be send me off to yet another specialist. I'm home today from work using alternate heat and ice.

Also, I have often thought which came first – some sort of inflammation (like the initial cold I had back last June that started all of this). Inflamed neck that tightens the neck and then ES symptoms begin then never go away. Or is ES the initial cause of all of this? Thank you.

Jump to this post

I do not know which came first, but I sure wish there would be a new study on this and other causes of the ear/neck/headache issue. Thought I was inching forward and 3 doc visits this week show me I'm at step 1 again. More tests, more ruling things out while symptoms increase. Seems like 25 years of tests would have answered some questions by now. I heard there is an injection that would be fairly accurate on a yes or no answer for ES so why not give the shot and rule it out? Instead docs need another CT scan, another MRI to rule out Otosclerosis, ETD, atypical Meniere and probably hypochondria. Didn't log on because I thought I would have good news… wonk, wonk… Disappointing!
BTW, I had that spasm, but only one time so I didn't relate it to ES.

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