Eagle Syndrome

@eastmas1- if you were advised against surgery, be grateful. This surgeon was being honest and not wanting to cause more harm. Most surgeons are not honest in that way.
I would move forward for ways to cope. Often times it’s not so much that the condition is actually getting worse, but it is what we, become sensitized for and tell ourselves, that make it feel worse.
I recommend somatic-therapy to help with changing the way you feel the sensations and how you think about them.
Focus on things you can be grateful for and small other changes that can improve pain tolerance.
Where the mind goes the energy flows.
Look at it as a blessing that you were recommended against a surgical procedure.

@christina61 You have Eagle Eye Syndrome but after surgery you are still having symptoms that you are told do not relate to Eagle Eye Syndrome.

You are looking to connect with other members like you.

May I ask if you have considered a second opinion?

After two years I finally figured out I likely have eagle syndrome. I’ve had tremendous jaw pain and everyone thought it was tmj. But after injections mris and CT’s, it appears to be Eagle. My styloids are close to 5.5 inches long. The ent in Dallas wants to cut my neck and that makes me nervous. Know any good specialists that do robotic surgery? Is that what I want? Does mayo do this? Thank you.

Seth

Your case sounds similar to mine. I was lucky that after two years I was referred to Dr Thorpe at UNC as my neurologist thought I had a CSF Leak. I was already scheduled to go to the CSF leak center at Duke and did testing. Immediately Dr. Thorpe referred me to Dr. Trevor Hackman at UNC. After doing a laryngoscopy he knew immediately what was wrong with me. He went back and looked at all my CT scans and couldn't believe all the doctors at duke missed it. Anyway he is a head neck surgeon(this is what type doctor you need to do ES surgeries. He is the only doctor I found that is trained on the Davinici Robot. I had both my styloids removed as well as my right thyroid all at the same time.

I have sent many patients to him to do revisions etc. Not all patients are candidates for the robot. I am not sure why. I will say of all the doctors i've ever met etc he is the best I've ever met.

He is trained in so many areas. He sees a lot of cancer patients, reconstruction of cleft pallets and vascular.

There is an Eagles support group that has a list of doctors trained on the Davinci. The have a list of all doctors trained/experienced in Eagles Syndrome. Compared to the experiences I read about I had a much easier time. They do have to cut about five holes in your mouth but the mouth heels fast and easily. It is less invasive and less risky.

I read up on Dr. Hackman and he has all sorts of awards but the one I was most impressed with is the one where other doctors vote on who they would choose to do surgery on themselves. He has won it several times.
Maybe you could call the Mayo clinic and see if anyone is using the Davinci robot. It takes a whole team trained in this.

Best of Luck,

Adriene Huffman

Thank you for sharing this. I was diagnosed with Eagle Syndrome last June. The Ent in Rochester NewYork also knew immediately what was wrong, However, I have numbness in throat, and bad headaches since diagnosis. He said neither symptom has anything to do with ES. I’m very confused, I also have stabbing pain, fullness feeling in jaw and ear pain intermittently. He is willing to do surgery, but only done 5 during his career. No other ENT does the surgery here.

If he doesn't know that ES definitely causes headaches in many cases, I would go to another doctor. I had the wildest headaches of my life, positional, stabbing, electrical. That is why originally my neurologist (whom I've gone to since I was 17 for hereditary headaches controlled with medicine) thought I had a CSF leak. He sent me to the Duke leak center to be tested. Thankfully I had a long history with a neurologist who knew I don't complain much. The headaches were so wild I thought I had a tumor or cancer. I woke up from surgery with no headache for the first time in two years. My surgery was like a miracle for me. 80 to 90 percent of the symptoms where gone immediately. Honestly I would find a head neck surgeon who has done a minimum of 20 ES surgeries. You can find a list of doctors with experience. I can't say enough about my surgeon but I realize that would be a little far. I know several have traveled to him from Boston and NY.. If you haven't already join the Eagles support group on facebook. There is a lot of good information on there as well as a list of experienced surgeons. I had my surgery over a year ago. Most doctors only remove the styloids and leave the styloid process. There are mixed reviews on this. Personally I started having jaw pain on my right side again and some other issues (not even close to like before) I went back for a check up and Dr. Hackman did a CT scan an he said part of the process broke off and it had already recalcified. He said this is probably my issues. No guarantees but I am going back into surgery to remove the rest of the process that is calcified. Unfortunately he can't use the robot this time. He has to cut in front and behind my ear. But honestly I've had a better experience with extreme symptoms than most. I don't know if that is just me. But i really only took one pain pill after the first surgery and that was because I thought I was going to be in pain. Do you homework and read up on intra oral with the Davinci Robot and external. I would get two opinions from experienced surgeons in ES. You are going to know what is best for you. Everyone is different. Best of Luck and Happy New Year!

@sethm007 Welcome to Mayo Clinic Connect, a place to give and get support.

After two years you were finally diagnosed with Eagle Syndrome. You are wondering if the surgery your specialist wants is the route for you to take and if they are the best person to do it.

I'm wondering if you have considered getting a second opinion?

Thank you Erika. I would LOVE a second opinion. I've spent countless hours looking or someone online. I noticed Dr Hepworth in CO and Dr Samji in CA do a lot. Is there a couple doctors this group recommends? I would GREATLY appreciate it!

Hello! I was diagnosed with ES after a 9 year hunt that lead me to more specialists than I can count. I’m reading through these posts and it seems that most people have not pursued surgery. I just wanted to offer that I had a styloidectomy in Aug 2020 and would be happy to answer questions for anyone who is looking for information. Please note that I had the vascular form of ES, meaning my jugular was impinged. My main symptom was intercranial hypertension which is different than the more typical form of ES and it’s symptoms (however it’s the same surgery regardless of impingement). I also struggled with neurological issues, face numbness, vision changes, dizziness, neck pain, daily headaches, migraines, etc. I’m here if anyone has questions!

Dr. Hepworth did my styloidectomy in August! Happy to answer any questions.