Yesterday I was diagnosed with Eagle Syndrome through my oral surgeon. She referred me to an ears nose throat surgeon who has never performed this surgery. I have been suffering for a year now and seen too many drs but in some ways now I am joyous that I finally have a name for my pain “eagle syndrome”. I am not nuts! The oral surgeon could actually feel it in my throat and see it somewhat on the X-ray. She said I was the first she had ever seen but told me I would need to see a surgeon to have it removed. The big question is how do I find a surgeon that knows what to do? I live in Maine USA and would be willing to go to a dr that knows how to take care of this. Any suggestions?
Hi Snowlady,
The best advice I can give is to refer you to Emma's list - Eagles Syndrome Doctors.xls - which details doctors w/ ES surgical experience worldwide. You may have to travel to get to one, but at least you'll feel like you're in good hands.
Isaiah 40:31
Thank you Isaiah for the list, it is a great start! The ones in Mass I’d be willing to travel.
Hi I was Diagnosis with Eagle Syndrome and was fortunate enough to be a patient at the Cleveland clinic already. The Cleveland clinic is a world speciality clinic. They have several doctors that specialize in Eagle syndrome. My first surgery is Scheduled for January 22nd I will let you know how it goes.
Your story is similar to mine! I was diagnosed by the first ENT I went to & happen to live near one of the foremost ENT surgeons in the US so was able to “skate through” the diagnosis & surgical processes.
Will look forward to your post op report! Thank you for sharing!!
Hi Isaiah. Surgery date was January 22nd and I am 6 days post op. So far so good. I still have a bit of swelling but thank God not a large amount of excruciating pain. Wonderful ENT surgeon as well as reconstructive surgeon. I go to get my stitches removed on Tuesday. Still having problems opening my mouth as well as my voice. How long does that usually last.
Good news that you’ve had surgery, and not in too much pain! I had trouble opening my mouth with the first surgery- I couldn’t eat properly so had smoothies, & couldn’t clean my teeth properly. I think it lasted about 10 days- 2 weeks, but soon back to normal. Was it external or intra-oral surgery? If it’s intra-oral then it will take a while for healing, if external it could be some nerves are irritated & affecting your voice, or it could be from the intubation? Nerves can take a little while to settle down- sometimes uo to a year for ful healing, but hopefully it’ll improve much quicker than that! Best wishes 
Thanks so much for your support . I feel so fortunate to have found a support group. Thanks for adding Dr. Lamare to the list of surgeons that deal with Eagle syndrome.
Two weeks for my voice to not sound like severe laryngitis.
Talking used muscles that made it not worth talking at all. I told people not to call and just text me…that helped it to recover quicker. Don’t over do it! No heavy lifting. No Bending over to pick stuff up…especially children! Let someone else do the things we THINK we can do even after surgery like pouring out that big pot of noodles, heavy vacuuming, mopping, pulling clothes out of washer and dryer and of course…driving, since head turning is kind of important but right now, but painful.
Good luck!!!
Hi Candy-mac Thanks for the heads up. Lots of Family around. Still hurting a bit, but thanks be to good tolerable. I have been doing probably more than expected. Waiting to heal so I can get ready for the second surgery…but it’s only been a month. Got my stitches out today. I really don’t feel much pain, not sure if my surgeon was great or I have a high pain tolerance. Thanks so muc
Hi Newmadison1,
For some reason your post didn’t come through to me till today. So glad you’re feeling better, & as Jules & Candy-mac said, patience in recovery is key. Let your your jaw & voice take a break for a couple of weeks. If chewing is uncomfy stick w/ liquid meals. I drank my meals (the meat, veggies, salad, etc. blended w/ almond milk in my blender) for probably 3 weeks after my first surgery. The more you pamper your body w/ rest & taking things cautiously/slowly now, the quicker you’ll recover.
It took me 2 months to feel “normal” after my first surgery & only 6 weeks after my second surgery. I had nerve recovery going on for over a year. They’re a bit pokey to heal but thankfully they do.