I’m a new member and have just heard the phrase Eagle Syndrome first the first time last week when my ENT was reviewing my CT scan. Apparently my left styloid is 5.6cm, the right is 4.2cm and both stylohyoid ligaments are severely calcified.
About about my story… I’m 37 years old and have no prior history of head/neck trauma or surgery. I did have a TIA 18 months ago after a chiropractic neck adjustment caused left sided weakness, temporary vision loss in left eye, and word jumbling. I have had occipital headaches since I was about 17, worsening as the years go by. The last 2 years have been debilitating, I also have pain in left jaw/ear when opening my mouth, trouble swallowing, dizziness, pressure in my head, and severe upper cervical neck pain.
In September 2020 I saw my GP who did a neck x-ray (normal), brain CT (normal) and thyroid ultrasound (small moderately-suspicious nodule seen). Referred to ENT who was not concerned with thyroid nodule but ordered a neck CT with contrast to rule out a parapharyngeal tumor. Results showed no tumor - but elongated styloid processes and calcified ligaments. ENT said “I think you might have a thing called Eagle Syndrome”. As I’m a nurse, he told me to research it and let him know if I want a referral to another ENT who may or may not operate on it.
Here’s the thing… I live in Ontario, Canada. I have read almost every post on this site, plus from other resources and can’t find a huge amount of proof that Canadian doctors are skilled at doing a proper styloidectomy. I know there are a few success stories out there but if I’m going to get this surgery done, I want it done by the best possible doctor out there. I also don’t want to wait for 8-12 months to see another ENT, only to be told they won’t do it. My research is pointing me towards Dr Samji in San Jose, CA.
My question is for non-US citizens… has anyone been able to have surgery done by a US doctor? What does Dr Samji (or similar experienced ES doctors) charge for a styloidectomy? Did your home country insurance pay for part (or all) of it? And what was the waiting time like?
Thank you in advance!