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Eagle Syndrome - Online Support Group

Newly diagnosed, first time posting

Hey all, new to the group. Amazing resource this forum has been for me, so I appreciate all the moderators and frequent posters taking time to contribute. So here goes…41-year old male from SW Ohio, diagnosed with ES in late March, but have been dealing with all different kinds of face/ear/headache pain every day on my right side for almost 5 years now. Then there is the ringing in the ears at night, coupled with the pain when laying on my side, my sleep has been terrible for a long time and it is taking a toll (fatigue, daytime sleepiness, stiff and popping joints, cognitive issues, etc). Over those five years, I’ve seen many specialists, had tests done, theories about what it could be, but nothing ever pointed to this condition (which isn’t that surprising considering how rare it is). Within the past couple years however, I noticed something pointy protruding the tonsil area on the right side of my throat and only recently “put 2 and 2 together” that maybe it was related to my pain. Finally saw an ENT doc that thought it might be something called Eagle’s Syndrome and after the CT Scan last month, he turned out to be right (45mm long styloid process bone on right, which is longer than the left side). I guess I’m finally relieved to know WHAT it is actually going on and that there might be a solution to this. I can say with certainty that my ENT doc is not an advocate for surgery as a treatment, as he wants to do an injection of lidocaine in the area that is protruding. However, after having spent time reading posts on this forum, I’m thinking surgery is the direction to go. My wife is less than enthusiastic of the surgery option, but she’s also seen me have 3 arthroscopic knee surgeries over the past 4 years, so I kinda understand it. Since I’m Ohio, I am attempting to reach out to Dr. Forrest at OSU Wexner, to see if he can review my case and take me on as a patient.

So since I’ve not been able to look at my CT Scan results WITH my ENT doc since the virus outbreak, I actually haven’t found the images that show the elongated styloid process bone. I do realize no one is an actual doctor on this board (I don’t think), but would anyone be willing to look at my images and find the one that shows it? I could sent a private message with a Dropbox link. Thanks again for listening.

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Some members have found that the lidocaine injections can help, but not always. If your doctor’s willing to try that for now, maybe that might be an option until you can get surgery? Or are you not able to have that with the current virus situation either? I think Dr Forrest has done several members’ surgeries so would be a good idea to see him.
I’m happy to have a look at your images, if I can open them okay- my tech abilities are not great!! You’re right, none of us are doctors on here though.
A tip someone gave me which helped with sleep was to sleep semi-upright, it did seem to help. I used a Vshaped pillow too which kept some pressure off the sides of my neck. Some of the pain you have could be down to nerve pain, & there are some medications which can help with that if you’ve not tried anything- like Amitriptyline, Gabapentin, Carbamazepine…there’s info in the Newbies Guide Section under ES Info- Treatment.
Hope that you can get some treatment soon!

Hi jleuzinger!

The symptoms of ES come from irritation of up to six of our cranial nerves which “live” in the neck near the styloid processes. Elongated styloids &/or calcified stylohyoid ligaments can also cause compression of the internal carotid artery or jugular vein when the head is in certain positions (this varies w/ each person). As you can see, it’s removal of the styloid process(es) &/or calcified stylohyoid ligaments that will allow the nerves & vascular tissues to recover thus surgery is the only real cure.

If you want to research which nerves might be causing your symptoms, visit YouTube & watch some of the Two Minute Neuroscience series - specifically the ones that cover the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus nerves. These are the 6 cranial nerves most often affected by ES. Though your symptoms seem mostly like trigeminal nerve irritation, you may still be interested in the effects of dysfunction of the other 5 nerves.

Click on the magnifying glass icon above & type in “Dr. Forrest”. Posts will come up where he has been mentioned. It will allow you to see what other forum members have experienced with him as their ES doctor.

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Isaiah_40_31, thanks for the guidance, after getting some help from “vdm” :slight_smile: , I’ve been able to see my scan images in 3D so it definitely seems like surgery is direction to go. Still trying to get on as a new patient with Dr. Forrest, however, if that doesn’t work out then there is another doctor that someone recommended that is closer to me. Here is the 3D scan image of my left and right side below. (also thanks to all others who have privately messaged me - it is much appreciated).

Scan_Left

Scan_RightSide

Great job making your images 3D jleuzinger (w/ thanks to vdm for helping!). Your right styloid is definitely long, curvy & thick at the top. Your left styloid though not super long is very thick. The characteristics of the styloids that can cause ES symptoms even in the absence of elongation are thickness, angle of growth, how twisted/curved they are & their relationship to the cranial nerves in the area. Each of us is “designed” a bit differently so some people have no symptoms even w/ very long styloids &/or calcified stylohyoid ligaments where others are debilitated. We’re the “lucky” :roll_eyes: ones.

I’m so glad you’re getting the support & information you need from this forum. That’s our aim for each member. I’ll pray for you to be able to see Dr. Forrest, but it would be worthwhile making an appt w/ the doctor who’s more local to you as well. It isn’t a bad idea to get two opinions regarding surgery & surgical strategy…

:blush:

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jleuzinger. Quite similar to mine. My left one was thick and long. Had an intraoral partial removal that helped, but eventually gave me worse pain.The second surgeon took it out externally. The upper tip looked like a thick round marble. Of course, since it was now shorter, some doctors would not re- operate
Dr Forest is one of the earliest surgeons we found on this site. I am pretty sure that I remember he did external surgeries. I recommend that you find someone who does that because there is more than you see. The stylohyoid ligament is attached to the styloid and is often calcified but does not show up on CT.It is not bone and from there it attaches to the hyoid.
The doctor can examine the area under your tongue and jaw to determine that.
You have my sympathy and empathy.You are quite a bit younger than I, so this is the time to do it. I understand your wife’s concern. I had 6 surgeries in 2.5 years. My husband has been great support. I am a year past my last surgery and doing well. Still have some nerve pain on the left side, but also have osteoarthritis in that jaw.
That is about the only remaining pain I have. .
I am still finding improvements in nerves. I just reclaimed some jaw symmetry and a nerve that had been dormant in a lower lip for years just started to work, which is giving me an even smile after many years. I do not remember having an even smile.
When you get well, do something really special for your wife.

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Emma, so pleased that you are still noticing there’s improvements even after this time! Keep healing…

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@emma such an encouraging message in your post. We are all hoping for recovery and elimination of our symptoms overnight, but the reality with nerves is that they get hurt quickly and take very long to recover!

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@emma, thanks for the reply…I really appreciate your insight and empathy. From what I’ve read, the external approach is the avenue I would want to go. That is interesting what you said about the possibility of calcification of the stylohyoid ligament not showing up on CT. As of now, I’m still on the waiting list for Dr. Forrest as it appears they’re still not scheduling in-person appointments or taking new patients. I did get a tip from another helpful user that Dr. Yash Patil (UC Health) is another great option for ES - and he happens to be closer to me. So as of now, I have appointment with him on June 23rd to get his opinion. If anyone else has any additional feedback on Dr. Patil, that would be really helpful. Emma, thanks again for sharing your experience and offering best wishes - and yes, my wife definitely deserves something special once I get well as it’s been a long and frustrating journey for her too.

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