Eagle Syndrome

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

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.

@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.

@mindyf did you have pulsatile tinnitus as a symptom?

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?

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.

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

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.

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.

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?