Eagle Syndrome

Can I ask who you used for a doctor? What city? I have Eagles syndrome and need surgery.

Hi - I realize this comment chain is very old, but. Dr. Edward Hepworth at Sinus Solutions at Immunoe, in Denver, CO, diagnoses and treats Eagles Syndrome. He is an ENT, and performs CSF leak and styloid surgeries, frequently with the help of a neurosurgeon. He also treats CSF leaks and IIH/Pseudotumor Cerebri. He specializes in EDS patients, like myself, and our various cranial and ENT issues. He does not believe I have Eagles Syndrome, though I have all the symptoms, because my CT is clear. I'm still in a pickle. The left side of my neck has every single Eagle's Syndrome symptom and it feels to a T like it. I swear if they open up my neck they'd find it! But according to imaging, nothing is amiss. Alas.

It took more than a couple of ENT's for diagnosis with me. A panoramic ct scan (you sit in a chair and the device rotates around your head) was the only way the tech or doctor could see what the F I was talking about! Im 55 years old. It has been over 20 years since then. I want surgery but cant find someone that "wants" to do it. Meaning one surgeon at a fairly prominent hospital (Loyola University) was wiling but stated it in such a manner as to not give me confidence. There are a lot of vital nerves and blood vessels in there. That being said, as I understand it a surgeon can go in externally or inter orally (through the mouth, into the throat). This last method has a poor surgical field but sounds safer to navigate around the vital stuff. Either way Im ready after all these years. It messes with my sleep. Maybe it is the angle of my neck on my pillows but I wake up all the time with pain in that region. Pushing on the one gland in my neck, the one that swells when you are sick, creates pain and pushes up so it crackles in my ear. I did recently watch a you tube video on the surgery so some one ifs doing it. I'd like to find a surgeon in my area near Chicago. It seems to be getting worse. Maybe the calcification is growing. I have read of some doctor papers( I forget the terminology), pre and post, that did have patients that had symptoms eliminated most but not all. Im ready.

Has he performed a panoramic radiograph. I hope this is the correct terminology. That is how they diagnosed my. You sit upright in a chair and the device goes all the way around you. Also the technician reading the scan needs proper direction on what to look at/for to to write up a conclusion.

I have had feeling of very tender "lump" on right-hand side right below my ear/behind jaw for 2-3 years now. The pain and "pinched nerve" feeling/engorged feeling radiates through-out the right side of my face, up to my head/temple and down to my shoulder. I also have "zaps" down through my chest sometimes. I have had ENT doctors order ultrasound, CT & MRI, but never a diagnosis of ES.
I attached pics of my CT that I took snapshots of my images but was not able to window/level manually or measure the styloid process, but I can see that my RH styloid process is longer than my LH side. It doesn't look as long as other example ES images I have seen, but I definitely think it is impacting nerves and possibly vascular on my RH side. I am in Tampa, FL area and also in the VA Healthcare system. I have a VA ENT appt. coming up in December, but not sure I will make much headway in getting an accurate diagnosis...tired of being told it's "in my head" and try gabapentin, etc.!!!

Sounds painful, @holemania. Welcome to Mayo Clinic Connect. Thanks for sharing the images.

I'd like you to meet @travelgirl @johealy31 @zebraclaire97 @paulaturner @eaglegirl1 and others. Hoping they can be helpful to you as you try and get a more definitive diagnosis.

I'm presuming from what you said, holemania, that you think ES is very likely your diagnosis?

Lisa, thanks for welcome. Yes, just based on my "weird" symptoms...that's what i believe right now.
I also have terrible tinnitus/ringing in both ears 24/7 - when i clamp my teeth together, the tinnitus tone changes to a different frequency.
I've explored all the options i can think of...I had all amalgam fillings removed (thought i might have heavy metal/mercury poisoning).
We've had EMF measurements done at house and turned off/unplugged all wireless devices.
I've had ultrasound, CT & MRI images performed but ENT dismissed my inquiry and thought that the tender lump and adjacent nerve pain and tender engorged feeling in my neck, jaw, face and temple could be related to a styloid process issue.
I wish I knew, but I feel like the epi-center of all my issues are right in that area on the right side only behind my jaw/under the ear lobe.
Thanks,
Dave

Hi,
There are less invasive surgery options out there. I had surgery Nov 11, 2019 to remove the styloid process on both sides using robotics intra- orally. With the robot they have more access and it is more precise. Problem is not a lot of surgeons are trained on the robot. I won't say everything is perfect but I am much better. Based on most peoples recovery I am doing far better and I had a severe case. I don't know where you live both Dr. Trevor Hackman at UNC Chapel Hill is doing the surgery using robotics. He has an excellent reputation. I hope this helps.

Chrisitna
.

Thanks for info Christina!
I have VA ENT appt. next week and hope to be referred to a non-VA ENT who is familiar with ES and surgery.
I'm trying to get referred to Dr. Jeffrey Magnuson near Orlando (I am in Tampa area).
Dave

I had my VA ENT appointment and the initial response was to dismiss styloid-induced symptoms/ES. But, after the initial ENT doctor consulted with the senior ENT physician, the senior doctor reviewed my CT & MRI images, then palpated my neck, jaw and intra-orally in my mouth, The senior ENT doc then confirmed my suspicion and diagnosed me with ES.
I will be following up with a VA ENT/Head & Neck Surgeon and will be scheduled for surgery soon!

Over 3 years of multiple doctors: ENT's, neurologists, chiropractors, dentists/TMJ specialists, multiple exams, CT/MR/Ultrasound imaging and medicines: gabapentin, prednisone, antibiotics, etc. and thousands of dollars later and I finally feel like the diagnosis is correct!

I am overjoyed & grateful!

Dave