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

@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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VA has a program called Community Care and you can use it for consult. Specifically state Eagle Syndrome and ask for second opinion. No one in LR picked up my consult, but I have BCBS also so my options are not as limited. Found information for Allen Presbyterian having a physician who has done ES surgery, but didn't see name. Hoping you get a turnaround in advocates for your care. Maybe you'll have successful surgery before me. Did you ever fall in military? Wondering because I fell and only have symptoms on side of my head that hit ground.

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@keetee

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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Did you try Dr. Samji in San Jose, CA? I think Dr. Cognetti is in Philadelphia. Look up to verify. Just going from memory… Wishing you the best, praying for your success!

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@empy

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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Listening to you completely! Doctor actually made one statement and got me back to my vigorous advocacy for me. He says, in a sullen voice I still think you have elongated styloid, but they didn't. I didn't react because I didn't want him to clam up. It really helped give me a shot of energy. I know I will be well soon and after about 25 years I can make careful forward steps to get all my life back. Thankfully I'm still working and my supervisors and friends know I'm not just lazy when I call in or leave to go home to bed… Even though the symptoms keep me from enjoying lots of things I am able to live a good life while respecting my limits. I'm looking into the doctors who have done successful surgeries on Ben's Friends.

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All, Dr. John Milligan, ENT Phoenix Arizona is absolutely one of the best surgeons I ever been around. If you have eagle syndrome, find a way to use him. He is probably the nicest most genuine and highly skilled physicians I have ever been around. He did the surgery on my wife three weeks ago and she had horrible pain for six years and is doing absolutely wonderful now. Besides the typical after surgery issues with the scarring and damage done from the surgery, she really has no ES symptoms at all. My wife and I both highly recommend Dr. Milligan.

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Thank you for the information. I am currently trying to talk to the VA and the community choice offered by the VA to allow me to go see him but it is an uphill battle. Hopefully I can be allowed to. I am very grateful for you recommendation.

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@de9g

Did you try Dr. Samji in San Jose, CA? I think Dr. Cognetti is in Philadelphia. Look up to verify. Just going from memory… Wishing you the best, praying for your success!

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Thank you for you reply and information. I am currently trying to deal with the VA so I can see a Dr who has experience with ES.

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@theeaglehasland

Thank you for you reply and information. I am currently trying to deal with the VA so I can see a Dr who has experience with ES.

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If you find a doctor in VA system please share facility if you can. So far I've had zero success with that.

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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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I was referred to an ENT Dr. In my area by the neurosurgeon the VA sent me to using the community care provided by the VA. I saw the ENT for about two minutes. I was in the middle of telling him all my symptoms and he cuts me off saying, “None of the symptoms you are describing has anything to do with Eagle syndrome,” and before I can say anything he tells me he is going to call the neurosurgeon that referred me to him and he would call me the next day and abruptly walks out of the room before I can respond. The entire appointment he had a dismissive and irritated attitude. I waited months, and navigated the difficult VA system to get this appointment. He does not call me the next day, so I called his office and left message with receptionist. Finally two days later his receptionist calls me and tells me the doctor has referred me back to the neurosurgeon that referred me to him in the first place, and gives no reason why. Now I feel hope slipping away. Bilateral Elongated styloids are confirmed and according to every source available to me, all my symptoms do indicate Eagle Syndrome, but the ENT dismissed the possibility of ES. I am scheduled to see the same neurologist I saw before the ENT on Monday. Having only the VA for healthcare, and these two doctors sending me back and forth and dismissing my symptoms as being caused by ES has me worried that I will never find help and get stuck in the sub-standard VA system and forced to endure this pain and suffering for the rest of my life. My symptoms are severe and have taken over my life to the point that I am having trouble taking care of myself. Please, if someone knows how I can utilize VA healthcare through the community care (choice program) to see a doctor out of my state, that has experience with ES, and is willing to help me, the info just may salvage my life.

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@theeaglehasland

I was referred to an ENT Dr. In my area by the neurosurgeon the VA sent me to using the community care provided by the VA. I saw the ENT for about two minutes. I was in the middle of telling him all my symptoms and he cuts me off saying, “None of the symptoms you are describing has anything to do with Eagle syndrome,” and before I can say anything he tells me he is going to call the neurosurgeon that referred me to him and he would call me the next day and abruptly walks out of the room before I can respond. The entire appointment he had a dismissive and irritated attitude. I waited months, and navigated the difficult VA system to get this appointment. He does not call me the next day, so I called his office and left message with receptionist. Finally two days later his receptionist calls me and tells me the doctor has referred me back to the neurosurgeon that referred me to him in the first place, and gives no reason why. Now I feel hope slipping away. Bilateral Elongated styloids are confirmed and according to every source available to me, all my symptoms do indicate Eagle Syndrome, but the ENT dismissed the possibility of ES. I am scheduled to see the same neurologist I saw before the ENT on Monday. Having only the VA for healthcare, and these two doctors sending me back and forth and dismissing my symptoms as being caused by ES has me worried that I will never find help and get stuck in the sub-standard VA system and forced to endure this pain and suffering for the rest of my life. My symptoms are severe and have taken over my life to the point that I am having trouble taking care of myself. Please, if someone knows how I can utilize VA healthcare through the community care (choice program) to see a doctor out of my state, that has experience with ES, and is willing to help me, the info just may salvage my life.

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Oh, that sounds terrible! Do you have CT scans with measurements of styloid process? If so, I wonder if you could get styloid measured again by someone else. If not, can you ask for a CT scan then radiologist will give measurements in report. If I think of anything that may give an idea I will post. Please keep trying for another styloid measurement.

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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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Who did the surgery? I have been tossed around from doctor to doctor just to be told they don’t treat eagle syndrome. The one doctor in my state that does treat it doesn’t accept my insurance. I am so frustrated. I am virtually disabled from this. I spend many days bedridden with the pain. It’s been coming on slowly for about a year and doctor after doctor telling me it was somatic and I was nuts. Finally one ent felt inside my throat and said yup that’s your styloid process! Relief! That I wasn’t crazy but not the battle of insurance and finding a doctor who is willing to do the surgery. I hear it’s risky and not many doctors can even do it. I’m an feeling hopeless, helpless and scared. Any info would be greatly appreciated.

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@de9g

Does anyone also have nosebleeds and/or bloody saliva? I do not, but wanted anyone having either of these to check out nasopharyngeal carcinoma. Almost as rare and very hard to find. Not trying to add to anyone's stress, but only condition I found very similar to ES in many aspects.

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I taste blood often. When I first started looking into my symptoms the nasopharyngeal carcinoma made sense. I have been fighting doctors for a year as my symptoms are progressively getting worse to the point of crippling. I can no longer work and I can not find a surgeon willing to do the surgery. They don’t offer any type of treatments or even pain medication. There are days I just lay and stare at the ceiling with only my thoughts to drive me crazy, because the pain is so bad I can’t move and I can’t sleep.

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What are your most troubling symptoms?
I haven't had surgery. The VA docs do not agree on a diagnosis so I am stuck at step 1 again.
Completely understand your frustrations and many days I feel the same. I still work, but find myself calling in a bit more as symptoms worsen. So far I've been living with these symptoms for over 20 years.
Depending on where you live there should be a doctor near you, but in mean time start back with GP for separate symptoms if you can afford co-pays.

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@abby4paige

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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@abby4paige I am also in MN and about to lose my mind trying to find a dr that will help me! I think the problem is that so few dr's have a clue about ES so they tell us all it's in our head and we shld seek counseling or my favorite….. you just need physical therapy and reduce your stress! UGH!!!!! I recently had several medical professionals within the same office tell me that they don't believe in ES causing pain!!! And I needed to look into a more mind and body approach to heal myself!!! Tell that to the bone and calcification in my neck that keeps me up at 3:00 AM and is destroying my life!
Did you make it to your appt at the U of M? Curious to hear about your experience if you did and who you saw!

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I am new to this group and found out a few weeks ago I have eagles syndrome. I went to my chiropractor and got adjustments to my neck. The pain has gotten better. I am able to swallow with a lot less pain and moving my neck around doesn’t cause pain in my throat or ear. So for those of you not able to find a doctor to help, I suggest seeing a chiropractor. Best wishes to everyone who aren’t able to find a doctor that will help.

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@imallers I wanted to let you know for my tinnitus I have been on L Carnitine for a couple of weeks now and my tinnitus is almost gone just a whisper now so am staying on it . Thanks

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