Eagle Syndrome

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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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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@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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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 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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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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