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Sat, May 25 4:55pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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.

Wed, May 15 9:25pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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.

Mon, May 13 7:46pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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

Sun, May 12 11:26am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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.

Sun, May 12 10:50am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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!

Sun, May 12 10:45am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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.

Fri, Apr 12 7:22pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

Thanks. Unfortunately, I need referrals and the ENT referred me to neurosurgery. Maybe neurosurgery will refer me to head and neck surgery.. I will ask at next appointment.

Fri, Apr 12 8:28am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

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.