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2 days ago · Eagle's Syndrome in Ear, Nose & Throat (ENT)

I'm still a little stuck, but have a call in to doctor in Louisiana and hope he will accept me as his patient. Spine Team says definitely have an issue with stylohyoid.ligament and that's ENT territory. Meds have not worked except the meds that make me sleepy so I only take at night. Wake up with same pain. Hopefully, nurse calls back soon.

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.