Game Plan and Associated syndromes

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Why do some Eagle Syndrome sufferers have worse symptoms then others or the symptoms seem to be so diverse?

Please consider the following during any research/work-up:

Did you have a prior trauma/injury? Trauma–facial, neck, jaw from motor vehicle accidents, contact sports, fall, etc.

What activities have you done in your lifetime?Activities–football, cheerleading, gymnastics, contact sports, etc.

Are you or any of your family members “double-jointed?” Laxity of cervical/neck muscles ligaments and tendons (loose) contribute to movement, overuse, calcification. Learn about Ehlers-Danlos Syndrome.

Treatment/Tips

Speech evaluation is an excellent idea for all eagle and/or hyoid bone syndrome sufferers. Speech therapist/pathologist may consider your swallowing and speech “inconsistent” as s/he is trained to appreciate primarily neurological components and not aware of other syndromes. If and when a barium swallow test is performed, radiologist 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 necessarily decrease pain, but will help with choking, coughing and regurgitation symptoms.

As far as prosthodontics, go directly to oral surgeon who has training and experience. Prosthodontics may be recommended: One set for day and one for night. Seek out 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) is knowledgeable of all three syndromes noted above. Very few ENT surgeons have treated patients with all of these syndromes. They all had board questions on these syndromes, but may not have actually seen a patient with constellation of symptoms during their clinical rotations, residencies or fellowships.

Also, many neurosurgeons or orthopedic surgeons received the board questions, but again, not trained to work up constellation of symptoms. They are trained to be performing surgery; hence, the designation, “surgeon.”

When CT Head or Brain MRIs are performed, the area where sufferers hurt may not actually receive thorough evaluation unless specialist/ provider specifically orders study and asks the radiologist to evaluate for possible Eagles, Hyoid Bone or Ehler Danlos. As one’s own advocate, ask provider to perform a study such as a “dedicated,” thin-slice CT and then put into a software program for 3D view.

Attempt a Rigid-cervical collar challenge for two weeks: Amazon sells Vista Aspen rigid-cervical collars for under fifty dollars. Wear day and especially at night. Do symptoms worsen or improve? Or do some symptoms worsen and others improve? Ahh. Now sufferer is making process.

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.

Please do the following recommendations under care of health care practitioner. An excellent primary care manger (PCM) can order many studies and place referrals to appropriate specialists.

Please do not leave your PCM out of loop. Just think how better off all undiagnosed sufferers would be if every Family Medicine Practitioner was aware of syndromes and identified these syndromes early on when pain and symptoms arise.

Be well. One can do more…

PS Every patient is entitled to more than one diagnosis!

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Thanks for that info!

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Sounds like you’ve done your homework!!

Found this very helpful, thank you!

@HiDeHiDeHiDeHyoid I’d also like to add:
Ask a family member and friends if they remember if you had injury to your neck or head.
Head injuries are not necessarily remembered LOL.

Well said!! There are more than one tool in the tool box and not just one doctor has them all. It takes a team.