Eagle Syndrome

Posted by Jackie, Alumna 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

@elimpert96

Please help….My name is John. I have personally been dealing with very symptomatic Eagle Syndrome for about 6 months. I cannot swallow on the left side of my throat and have lost all of the muscle mass on my left jawline and upper neck due most likely to nerve damage. My entire left side of my face lights up in pain with every heart beat as i can feel every palpitation in my jaw and neck. The pain at many times is unbearable and is so intense that my heart is reacting by skipping a beat and raising my blood pressure. I cant eat, drink, sleep, swallow, or even turn my head to the side fully without horrible pain. My symptoms have continued to worsen and I believe surgery may be necessary but i cant find a doctor that will accept the fact that I'm dealing with Eagle syndrome. Despite 3 ER visits, imaging showing an overly calcified and elongated styliohoid process, and almost every associated symptom of Eagle Syndrome, I still cant find a single local ENT surgeon that is willing to accept that i am suffering from this rare condition. I read your response about your son and am desperate to know of any info on knowledgeable doctors you may have consulted with in any state! I am a 33 year old otherwise healthy male. I am very aware of the surgical dangers and I know that it must be a last resort but I may be running out of time to delay any longer no matter the risk! I really need a decent doctor that is willing to operate if things get any worse for me. Right now i dont have one and like i said I'm running out of time. I have a great many other symptoms from this not listed here but for the sake of not wasting both our time, I hope you will believe me at my word when I say I've researched enough and been to every doctor, neurosurgeon, ENT, ect., to have ruled out everything else and to know that this is as i was told in the ER, Eagle Syndrome. I cant explain the frustration of months and months of suffering only to have each doctor just pass me off to the next with a question mark. Either they are unfamiliar with Eagle Syndrome altogether or in the case of even the Johns Hopkins ENT's so ignorant of the real symptoms from a lack of knowledge on the condition and/or so unwilling to believe that i could have this rare genetic condition at the age of 33 that they refuse to accept the truth. I begged the 2nd ENT I saw to at least consider surgery if it was absolutely necessary and he told me he would only make things worse if he attempted surgery. He told me out of 100 people he's seen that thought they had Eagle Syndrome, only 2 actually had it…. I Don't think he operated on either. I am desperate for any other info you may have on qualified doctors familiar with this condition. Please respond at your earliest convenience. Thank you and May GOD Bless you and your family.
P.S. I will keep you and your son in my prayers and I hope you are both in Good health when you receive this. I have yet to go through the link you had attached but will do so immediately following this reply. Thank You again!

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Hi, John, I am recovering from my 3rd surgery. 1st one done by ENT internally and did not help much. Second on same side 5 years later externally. Very successful. 5 days iuy from External on the other side. Some facial paralysis expected to clear up in a few weeks. I just found this site. I do not see much activity or answers. There is another more active forum. The dotors list was updated in 2017 and now there is a doctor discussion tab. I am not sure about doctors in New York, but 2 excellent ones in Philadelphia. ENT 's are not the best option. Doctors who are head and neck oncologists and specialize in SKull Base Surgery have the most experience. They remove tumors from the skull and sometimes must remove the styloid to get the tumor. Eagles is not as rare as pepple think, but it is not common. There is much more literature about it online in the last five years. My surgeon teaches and he is using my case for teaching purposes. The other eagles website has a very active forum

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I wanted to add some comnents to everyone. You are not alone. The headaches, jaw pain and dizziness,so many can be caused by Eagles. I am new and not sure I can name doctors on this site, but there is a list and a discussion about doctors on another site. Much encouragement and blessings to you all. I have seen the other site mentioned here. It still saddens me after 6 years of research for myself to know that we are still running around seeing doctors that do not believe in Eagles or who tell us to live with it. They would not live with it. Skull base subspecialty in head and neck surgery often in universities or cancer centers are your best option for diagnosis and treatment. CT scan of neck with styloid measurement, and better with 3 D enhancement will give you answers. If you can get that you can get answers. There is a well known doctor in San Jose CA and several more around the country mo in the PA area and several others. Mine is in Baton Rouge,La. Indiana, KS. Maryland are just a few places. I think Atlanta, not sure. Hope I have helped someone today.

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@empy

I wanted to add some comnents to everyone. You are not alone. The headaches, jaw pain and dizziness,so many can be caused by Eagles. I am new and not sure I can name doctors on this site, but there is a list and a discussion about doctors on another site. Much encouragement and blessings to you all. I have seen the other site mentioned here. It still saddens me after 6 years of research for myself to know that we are still running around seeing doctors that do not believe in Eagles or who tell us to live with it. They would not live with it. Skull base subspecialty in head and neck surgery often in universities or cancer centers are your best option for diagnosis and treatment. CT scan of neck with styloid measurement, and better with 3 D enhancement will give you answers. If you can get that you can get answers. There is a well known doctor in San Jose CA and several more around the country mo in the PA area and several others. Mine is in Baton Rouge,La. Indiana, KS. Maryland are just a few places. I think Atlanta, not sure. Hope I have helped someone today.

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@empy The statistics note that 20% of the population have ES and only a few have symptoms. Doctors don't understand or don't want to. I recently saw a neurologist who said that it CANT be ES. I have had progressive and consistent symptoms for almost 10 months now, diagnosed 6 months ago. With neck pain that would not go away I kept pushing until I had an answer. The diagnosis was noted by the CT report. Once I had an answer it still took 6 months time for the head/neck surgeon to agree that I was a candidate for surgery. I am now waiting for a response from one of the docs in Philly for a second opinion on the best approach. My doc wants to do intraoral. It seems that the general consensus is externally. Ideally I hope to have the doc in Philly do the surgery, but getting my insurance to approve out of network may be a hurdle.

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@mindyf

I've had the surgery done in March of 2017. I have no feeling in my chin/neck on both sides all the way down to the scars on my neck where they opened me up. It was a 5 hour surgery and I had 2 drains on the outside of my neck while being in the hospital for 48 hours. It was very difficult to swallow solid foods for a very long time and I still have difficulty with it at times. I often drink out of a straw because my swallowing mechanism doesn't seem to want to cooperate without that feeling in the area. About 4 months ago the pain in my left ear started coming back, at first a dull "earache", then the feeling of a match being lit deep in my ear and sometimes like someone taking a screw driver to my ear. I started experiencing the stroke like symptoms. I'm now waiting for the results of my CT to see if the part of the process that was left in is just slightly still "ticking" my carotid. This is certainly not a fun oddball disease to have to deal with and if anyone has questions about the surgey….I would be glad to help

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@mindyf did you have pulsatile tinnitus as a symptom?

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@brooklyngirl

@empy The statistics note that 20% of the population have ES and only a few have symptoms. Doctors don't understand or don't want to. I recently saw a neurologist who said that it CANT be ES. I have had progressive and consistent symptoms for almost 10 months now, diagnosed 6 months ago. With neck pain that would not go away I kept pushing until I had an answer. The diagnosis was noted by the CT report. Once I had an answer it still took 6 months time for the head/neck surgeon to agree that I was a candidate for surgery. I am now waiting for a response from one of the docs in Philly for a second opinion on the best approach. My doc wants to do intraoral. It seems that the general consensus is externally. Ideally I hope to have the doc in Philly do the surgery, but getting my insurance to approve out of network may be a hurdle.

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I am newly diagnosed by CT scan from an ER visit. Symptoms started a year ago , but constant for the past 6 weeks. After visits with family dr, dentist and oral surgeon they think it’s in my head. Well, turns out it is in my head, but in the form of bilateral elongated styloids and densely ossified styloid ligaments that extend all the way to the hyoid bone. The ER doc actually entered the room with his medical dictionary and said he has never seen this diagnosis before and suggested that I see an ent. After calling a few locations and being told that they will not see me, I have found 1 doc at the University of Minnesota that has treated this before. They are booked out a month, but am hopeful to see some relief in the future. Has anyone experienced trouble in getting surgery approved by insurance?

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@brooklyngirl

@empy The statistics note that 20% of the population have ES and only a few have symptoms. Doctors don't understand or don't want to. I recently saw a neurologist who said that it CANT be ES. I have had progressive and consistent symptoms for almost 10 months now, diagnosed 6 months ago. With neck pain that would not go away I kept pushing until I had an answer. The diagnosis was noted by the CT report. Once I had an answer it still took 6 months time for the head/neck surgeon to agree that I was a candidate for surgery. I am now waiting for a response from one of the docs in Philly for a second opinion on the best approach. My doc wants to do intraoral. It seems that the general consensus is externally. Ideally I hope to have the doc in Philly do the surgery, but getting my insurance to approve out of network may be a hurdle.

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Please let me know how the insurance handles the out of network care. I am waiting to see the only Head and Neck surgeon in MN that has treated ES, but it's a month out. Dr. Samji in California will do a phone consult for $500, but I am not sure how the rest of the out of network care/cost would be handled by the insurance co. Dr. Samji has done over 300 of these surgeries. The MN surgeon maybe has 1 every year or so.

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Hello Everyone, I am posting to update. Had an ES diagnosis then they took it back. Finally, after 20 years of ENT care, had an MRI and MRA of head ear and spine. Got results… Not ES, is severe degeneration of c3 – c7. Good to "maybe" have an answer, but wonder how much less damage to ears, neck, throat and shoulder if doctors had listened 20 or even 10 years ago… Hoping all of you get quicker diagnosis and letting all of you know you are in my thoughts everyday! Keep believing in improved
health

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@de9g

Hello Everyone, I am posting to update. Had an ES diagnosis then they took it back. Finally, after 20 years of ENT care, had an MRI and MRA of head ear and spine. Got results… Not ES, is severe degeneration of c3 – c7. Good to "maybe" have an answer, but wonder how much less damage to ears, neck, throat and shoulder if doctors had listened 20 or even 10 years ago… Hoping all of you get quicker diagnosis and letting all of you know you are in my thoughts everyday! Keep believing in improved
health

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Be careful, you can have both. I did. Had a c6-c7 surgery and the Eagles got worse than ever. EAgles does not show up on a MRI or MRA. Neurosurgeons have never heard of it. It is so close to the spine but they do not see it, or think about it ever. So do not be surprised if the fusions do not do the trick. Before you have fusions or nerve burning, I recommend that you go to a good pain management doctor and have him/her test your cervical discs for pain from the discs. They can test by injecting marcane, like novocaine where the MRI shows the spurs or disc problem. If the marcane gives you improvement then go for treating the discs, but if you feel nothing imrpoved with the tests, then I would see a neurologist for nerve conduction and EMG to see if there is a correlation to spine and pain. If not then I would continue to look at Eagles. I did not follow that regimen. I did have the pain management doc tell me my pain was not C7. I did not heed his warning. I feel like my fusion was really unnecessary at the time, though I don't have a crunching in my disc, but that surgery made my Eagles situation worse.
If you have had a CT scan that shows elongated calcified styloids, you very well can have shoulder and neck and back pain. I could not turn my neck, lift a book, type on the computer or even chop vegetables last summer, after my fusion in March of last year. My torso and arms were practically locked in a position that felt like my arms needed to be right at my side and my neck and torso could not move nor could I lift my arms without terrible shoulder blade and back pain. I was in bed on ice about 18 hours out of the day. I hurt like I just wanted out of this life. Finally after removing my styloid to the base of the skull and the stylohyoid to the hyoid bone, in September, I had immediate movement of my neck and arms I worked in my garden 2 weeks after Eagles surgery with no arm shoulder or shoulder blade pain. It took about 2 months or maybe 3 before I could lie down flat,but I could immediately roll over in bed for the first time in years.
I did have a spur in my c7 nerve root and I can lift my head up and look at the ceiling with no pain after the fusion, but it did nothing for the ear, neck, shoulder, back or feeling of something stuck in my throat and sometimes first bite syndrome.
Remember this, your trapezius muscle starts at the base of your skull. It spreads out across your back in a wide V shape. The sternocleidomastoid muscles are in your neck and attach to your shoulder. Those muscles can be affected by the styloids or the accessory nerves which are pinched by the styloids. My pain was always described as muscular, but therapists could not release those muscles. Whatever the cause, the pain in my back got way worse and burning. I could not lay my head down because of the intense pain in my skull. It was then that I realized for sure that I absolutely had to have the styloids removed and removed soon. Regardless of which surgery you do, you may need both, but doctors do not know the amount of pain Eagles can cause. I am now 4 weeks out of surgery to remove the opposite side. Styloid free now, and I can move much more freely. I cannot tell you everything that is better because some things get better from the steroids in surgery and start to hurt in a few months. So, I do know that a lot of things seem much better and I will be able to quantify it all in a few months.
I hope you do not take any action that will be permanent with your neck until you do full testing of the cervical areas where they believe from the MRI are the problem. You cannot undo the nerve ablations or the fusions. Make sure what they see on the MRI are indeed actually causing pain. Many times cervical spine can look awful but not be causing pain. Hope this helps others not get the wrong surgery or make you worse. These two things have similar symptoms, so be careful.

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Yes, thank you so much! I really appreciate your explanation. You are so right, docs have no idea of the pain and effect on my life. When I say flying is horrible they say try anxiety meds before flight. When I say it feels like me neck can't hold my head they say get more rest. When I say I've had a headache, earache, ringing of ears and insomnia for several years, right side only, they send me to mental health. I wouldn't let anyone do surgery in neck area unless it meant paralysis otherwise. I am so glad you replied. Any questions I can ask to get another detailed look at ES? The ENT is certain he is right.

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@de9g

Yes, thank you so much! I really appreciate your explanation. You are so right, docs have no idea of the pain and effect on my life. When I say flying is horrible they say try anxiety meds before flight. When I say it feels like me neck can't hold my head they say get more rest. When I say I've had a headache, earache, ringing of ears and insomnia for several years, right side only, they send me to mental health. I wouldn't let anyone do surgery in neck area unless it meant paralysis otherwise. I am so glad you replied. Any questions I can ask to get another detailed look at ES? The ENT is certain he is right.

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I do not know where you are located. There is a list of doctors in the USAand one of doctors outside of the USA that you can look at if you want to join the other forum. Do you have a CT scan of your styloids? CT scan of neck styloid protocol with measutements?

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de9g, i noticed your queston about the neurosurgeon or neck surgeon earlier. Neurosurgeons do not do ES surgery though it seems that they should. The Eagles surgery is done by either an ENT who is good and does it through the mouth, which is a partial correction or by a Head and Neck surgeon that is a SKULL BASE SPECIALTY. These surgeons are usually found in cancer centers. Most surgeries done in the skull base are to remove tumors, and these surgeons know how to do the job with least amount of damage to nerves.. Sometimes, they remove styloids and stylohyoids to get to tumors. That is why they are the best at Eagles surgery. These surgeons usually do the external surgery from outside the neck which is riskier. In my case, I had one through the tthroat, but it did not help much. Finally, in 2018, I had to resort to the skull base surgery. It was successful. I just had the seocnd side done 4 weeks ago. I do have some temporary facial nerve paralyisis that involves my mouth and eyelid. It seems to be getting better, but I expect it to be awhile before I am able to use my eye and mouth properly. It was 4 weeks ago. The doctors list that I mentioned can be found at http://www.livingwitheagle.org.

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@empy

de9g, i noticed your queston about the neurosurgeon or neck surgeon earlier. Neurosurgeons do not do ES surgery though it seems that they should. The Eagles surgery is done by either an ENT who is good and does it through the mouth, which is a partial correction or by a Head and Neck surgeon that is a SKULL BASE SPECIALTY. These surgeons are usually found in cancer centers. Most surgeries done in the skull base are to remove tumors, and these surgeons know how to do the job with least amount of damage to nerves.. Sometimes, they remove styloids and stylohyoids to get to tumors. That is why they are the best at Eagles surgery. These surgeons usually do the external surgery from outside the neck which is riskier. In my case, I had one through the tthroat, but it did not help much. Finally, in 2018, I had to resort to the skull base surgery. It was successful. I just had the seocnd side done 4 weeks ago. I do have some temporary facial nerve paralyisis that involves my mouth and eyelid. It seems to be getting better, but I expect it to be awhile before I am able to use my eye and mouth properly. It was 4 weeks ago. The doctors list that I mentioned can be found at http://www.livingwitheagle.org.

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Thanks. Unfortunately, I need referrals and the ENT referred me to neurosurgery. Maybe neurosurgery will refer me to head and neck surgery.. I will ask at next appointment.

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The VA is my only source for healthcare. After years of complaint about symptoms and many test someone finally noticed I had bilateral elongated styloid. I was sent to a civilian neurologist and they had no idea, so they referred me to ENT. I told the doctor all my symptoms which are exactly the same as most of you have stated. Neck pain, headaches, weird sensation in my throat, electric shock type pain when turning head, jaw pain and a feeling of pressure in my head as if I was hanging upside down too long, popping and clicking and catching in my neck. The ENT told me none of the symptoms I mentioned were a result of ES. He further stated that ES only causes pain directly under the ear near the gland in the neck under the ear. He treated me as if I were imagining or fabricating these symptoms and dismissed everything I had said. I am at my threshold with these symptoms. I have no quality of life. The more I am up walking and moving around the worse the symptoms get. Having only VA as healthcare it took months to be able to see a doctor and I don’t even know if I can get, or how to go about getting another opinion from another doctor through the VA choice program. I cannot continue to live like this. Does anyone know of any doctors in Texas that will take me seriously and help me, and work with me through the VA? Any information will be greatly appreciated.

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@theeaglehasland

The VA is my only source for healthcare. After years of complaint about symptoms and many test someone finally noticed I had bilateral elongated styloid. I was sent to a civilian neurologist and they had no idea, so they referred me to ENT. I told the doctor all my symptoms which are exactly the same as most of you have stated. Neck pain, headaches, weird sensation in my throat, electric shock type pain when turning head, jaw pain and a feeling of pressure in my head as if I was hanging upside down too long, popping and clicking and catching in my neck. The ENT told me none of the symptoms I mentioned were a result of ES. He further stated that ES only causes pain directly under the ear near the gland in the neck under the ear. He treated me as if I were imagining or fabricating these symptoms and dismissed everything I had said. I am at my threshold with these symptoms. I have no quality of life. The more I am up walking and moving around the worse the symptoms get. Having only VA as healthcare it took months to be able to see a doctor and I don’t even know if I can get, or how to go about getting another opinion from another doctor through the VA choice program. I cannot continue to live like this. Does anyone know of any doctors in Texas that will take me seriously and help me, and work with me through the VA? Any information will be greatly appreciated.

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That sounds like me. I also have eagles syndrome, but I was also recently diagnosed with psuedo tumor cerebri. Which was the cause for my pressure feeling when I got my headaches. It was also the reason why it seemed the more I moved around the worse it got. The psuedo tumor is also the same reason my heart rate always ran a little high. I was always 110-105 resting. I am down to 95 resting on average now since I was started on diamox. I haven't had a headache since the diamox either. Even with as long as my ES styloids are. I still feel my styloids in there poking, making my ears hurt. I think sometimes when you have the styloids you can have other things wrong and sometimes the symptoms overlap. I don't know a whole lot about the VA, but I do know that it sounds like you aren't being cared for the way you should. I had to go to another state to find answers because no one in my state knew what eagles syndrome even was without having to do a Google search. I wish you the best. Keep looking for answers and never settle for second best!

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@brooklyngirl

@empy The statistics note that 20% of the population have ES and only a few have symptoms. Doctors don't understand or don't want to. I recently saw a neurologist who said that it CANT be ES. I have had progressive and consistent symptoms for almost 10 months now, diagnosed 6 months ago. With neck pain that would not go away I kept pushing until I had an answer. The diagnosis was noted by the CT report. Once I had an answer it still took 6 months time for the head/neck surgeon to agree that I was a candidate for surgery. I am now waiting for a response from one of the docs in Philly for a second opinion on the best approach. My doc wants to do intraoral. It seems that the general consensus is externally. Ideally I hope to have the doc in Philly do the surgery, but getting my insurance to approve out of network may be a hurdle.

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I have been an extremely healthy 66-year-old woman who works out five days a week I have just been told I have eagle syndrome.. I was told this normally happens and people in the ages from 40 to 50 .. I live in Sacramento California and after hearing all these scary stories I need directions to the physician in Philadelphia please …My symptoms began about a year ago and I just pretended it was nothing but after sharp pains going through my neck up to my ear I finally did process of elimination and it was the MRI that showed the Styloid Could be pressing on my carotid artery.
I humbly ask for the physicians name in Philadelphia please .
And may God bless each of you going through this I pray for you all 🙏🏽
Sincerely, Cristina from Sacramento Ca

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