Eagles Syndrome But No Surgery

General
1

So, I went to my Specialist in Ann Arbor, Mi. Her name is Robbi Ann Kupfer. She doesn’t think The Styloids are long enough (yet) to warrant surgery. She said she could pass me on to someone, that would remove them. But, she doesn’t want to remove them, yet. She did say, I have weak muscles in my neck and face. Also, the muscles in my the back of my tongue have weakened so bad. ( Who knew, you needed your tongue to swallow. I didn’t) She feels that my weak muscles is my immediate issue. It is causing swallowing problems and causing my voice to go. She has sent me on to a Speech Therapist. Which has helped my voice. My job requires a voice. Hopefully it helps my swallowing issue. Also, I had to get a mouth guard thru my Dentist. I clench my teeth. Maybe that will relax my muscles, so I can strengthen them.

She told me one of the Styloids points forward and on points backwards. She said I have Eagles, but she feels, we need to proceed with caution. She doesn’t always jump to remove them. So here I sit. Hopefully I get relief. Been doing Speech Therapy for 2 weeks now. Fingers crossed.

2

Hope that the speech therapy helps then. Not everyone feels that they’re ready for surgery, and there are risks, but it seems a bit strange to wait for them to grow longer and then maybe do more damage! At least she’ll pass you on to another doctor if you do feel you need surgery.

3

I hope she isn’t too cautious. I will give it a try, but I will not wait til I am in so much pain. I already deal with My Hubby’s Swallowing Issues. (He has Muscular Dystrophy) I have no time and patience to deal with mine. Especially, when it can be fixed. I hope for the best.

4

Does your doctor’s advise feel right to you?

I had a doctor tell me I was"fine" and didn’t need surgery, even though the CT radiology report showed I had compression of both jugular veins and the ICA. I asked to be sent on and that doctor told me my situation was serious.

If it doesn’t sound right to your instincts - be your own advocate.

5

Yes, sometimes the docs are cautious and don’t want to do the surgery themselves… at the end of the day there is no ‘cure’, other than trying to get them removed. And sometimes leaving them in for too long can start to damage nerves…
Sorry to hear about your hubby’s health problems too- sending you a hug.

6

Hi, first-time poster, longtime sufferer. Speech therapy is an excellent idea for all eagle and/or hyoid bone syndrome sufferers. Interestingly, multiple speech therapists said my swallowing and speech was inconsistent. I suspect they were attempting to appreciate a neurological component. If and when a barium swallow test is done, one might discover valleculae residue on the study. A speech therapist will advise you to chin tuck, and swallow twice, followed by a sip of water. Speech therapy will not help with pain, but will help with choking, coughing and regurgitation symptoms.

As far as prosthodontics, go directly to oral surgeon who has training and experience to have your set made. One set for day and one for night: An oral surgeon who specializes in Eagles, Hyoid Bone, and Ehlers Danlos syndromes. I see Dr. Joseph Tregaskes, DMD in Richmond, VA. Be sure your otolaryngologist (ENT) specializes in these three areas noted above.

Remember, many neurosurgeons are not as aware of these conditions as you might think. When CT Head or Brain MRIs are performed, the area where we suffer is not evaluated unless specialist ordering specifically requests radiologist to evaluate for possible Eagles, Hyoid Bone or Ehler Danlos. Many times our syndromes’ specialist will order a “dedicated,” thin-slice CT and then put into a software program for 3D view.

If one is extremely fortunate, a pain specialist, interventional radiologist and/or physical medicine and rehab (PM&R) specialist is in your area: One who performs an anesthetic and steroid challenge under fluoroscopy to determine if pain relief indeed occurs in the area. One may choose to manage through injections, and when all else fails move toward surgery.

The difficulty for most sufferers to grasp, is that there simply is not a one-doc shop to fix. By the time one specialist discovers the real diagnosis, damage may have been done to jaw, spine, nerves, dentition and tissues (connective and muscle) and mental health. Also, a sufferer must be prepared to travel.

Be well. One can do more…

7

@HiDeHiDeHiDeHyoid,

It seems like you speak from experience. Sorry if you’ve “been through the ringer” but thank you for your insight. It will be helpful for all readers.

8

Welcome to the nest.

Like all Eagles’ Nests…each bird’s view is different and we all learn to fly differently.

Thanks for sharing your flight path.

9

neecee,
Did your doctor offer a reason for the weak muscles in your neck and face? That’s not normal. I believe time would be better spent on trying to figure out why they are weak than just trying to make them stronger???

10

No, she didn’t say what could cause it. But, I am in need of my voice for my job. We will work on finding out why, but I need my voice now. I need my job. I carry the insurance and other benefits for my family. But, I will definitely push her to find out why.

11

From my experiences, if you get surgery to remove the extra length of bone a lot of the swallowing, voice, and clenching issues will improve and certainly stop getting worse. You do not realize what all your body does to try and work around the pain. I am surprised that you haven’t already experienced an increase in pain from the exercises they are giving you to “improve” your issues. Get surgery.

12

I saw you live in VA and I do also! Have you been able to find an ENT that specializes or understands Eagles? Have you had surgery?