We are at the hospital with our non verbal son being gaslighted again. Blaming autism for his behaviors instead of pain. They are totally ignoring his elongated styloids to be the cause of his symptoms. I have very little confidence in the medical professionals at this point. All lab tests are normal so they want him to see a psychiatrist to put him on drugs. 
I wish I would wake up from this nightmare. They did a CT of his head and neck and the radiologist didn’t even mention hits elongated styloids so they don’t believe that’s his issue. EVEN THOUGH OTHER TESTS SHOWED THEY ARE 4.6 and 4.8 How can so many doctors and radiologists be that ignorant? 
He has had a CT with and without contrast of his neck along with a cone beam. Is there any other test to confirm Eagles?
I’m so sorry for you & your son, so frustrating 
We do unfortunately see many members gas lighted & pushed from doctor to doctor with no help, so you’re not alone, and at a guess probably your son having autism is another reason why they don’t want to help!
Some doctors do a steroid & lidocaine injection into the tonsil region & if it helps (along with having the symptoms of ES & elongated styloids) then use this to diagnose ES, but it doesn’t always help so shouldn’t be used to rule it out. I don’t know if this would be at all possible with your son, presumably he’d need sedating to have an injection like that? in which case you wouldn’t be able to tell if it helped (some members have found the injection helps but it can be very short-lived).
Have you contacted any of the doctors on our list in TN? If not try one of those, if you have & you’re still not getting anywhere I think unfortunately your best bet would be to send his scans to one of the more experienced doctors on our list and to get their opinion; some of the doctors will review scans and do phone/ video consults. I guess maybe the nearest to you might be Dr Hackman in NC (he has taken on ‘tricky’ patients who other doctors have refused), Dr Newman in SC, maybe Dr Cognetti in PA? Here’s a link to the Doctors List:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Sending you a hug 
Karen, CT Scan is the gold standard for diagnosing Eagles. I suggest you request the ordering doctor of the CT to request the radiologist evaluate the scan for Eagles and to measure the styloids. Often if it is not requested, the radiologist will not evaluate for it.
Dont expect ER to provide any solutions as they are not familiar with Eagles and some dont believe in the diagnosis. My neurologist whom I get botox for my jaw and temples is the one whom suggested the Eagles to me. My PCP wanted to argue with me about ordering a CT scan even with a peer reviewed scientific paper in my hands. He eventually capitulated and ordered the scan but put in a diagnosis of TMJ which is not covered by insurance. I later had to get a correction of the codes. The CT scan did indeed confirm the diagnosis. I flew out of state to see an Eagles specialist whom did NOT gaslight me. You are on the right track but need to get a doctor who has experience with Eagles. My only regret is that I didnt get a specialized scan to evaluate for vascular compression from the styloids in the neck. There is only a few surgeons in the US who work along side vascular surgeons and evaluate for this. Hang in there and keep searching for the right doc.
Thank you Jules! We did go to Dr. Mannion in Nashville but he doesn’t sound like he has much experience because he said himself he is a throat cancer surgeon and hasn’t had much experience with eagles. He and Dr. Old from Ohio both said he doesn’t have eagles because he can’t tell them his symptoms even though I am his voice and telling them what I see and observe.
Hi Snapple2020, I did request the radiologist check for the elongated styloids and she said again, he did not mention the styloids so your son doesn’t have Eagles. We are trying to rule out anything else before we make the decision to get the surgery since it is risky and a difficult recovery for anyone let alone someone with autism.
Yesterday the hospital checks with an ENT and they looked at the CT scans. They said yes indeed he has calcified elongated styloids and hyoid process. Fast forward today …however he does not have eagles syndrome. I replied, I am not convinced so prove it to me because I would love for that to be the case. (Crickets)
What specialized scan evaluates for vascular compression from the styloids in the neck? I believe he may have that issue due to his symptoms. Which surgeons know about vascular compression? We did a tele health appt with Dr. Osborne in LA. He said the tests aren’t 100% accurate and Ben has elongated styloids but we won’t know if they are pressing on any nerves, etc until we operate. Dr. Osborne would be probably the best choice but we aren’t talking about someone who can jump on a plane to LA. Having autism puts a huge complication in the mix not only to drive him fit 24 hours out of state but the surgery and recovery is a bit scary.
I appreciate your info and response
@KarenG - I’m sorry I missed your initial post on here. You’ve stated that traveling will be difficult due to your son’s autism which I can understand, however, it may be the course you need to take to get him the care he needs.
Dr. Newman whom @Jules suggested did ES surgery for a 12 year old boy when no one else would acknowledge he had ES because his styloids weren’t over long by adult standards, but they were by the standards for a growing child. His mom wrote a book called Connecting the Dots by Sherri Jonas (available on Amazon) about their experience. Thus Dr. Newman might be worth checking in with.
Because your son also has elongated hyoid greater horns, Dr. Cognetti in Philadelphia might be good to consult with as he does styloidectomies, hyoid bone resection & vascular decompression surgeries (should vascular compression show up in your son’s future testing).
The best initial & possibly only test he’ll need to determine if he has IJV (internal jugular vein) or ICA (internal carotid artery) compression is a CT w/ contrast especially if it can be done dynamically (doctor needs to order it that way). Dynamically means it’s done w/ his head in different positions i.e. turned right/left, looking up/down & possibly on the diagonals. That may be difficult depending on how profound his autism is & often compression shows with the head in the normal neutral position used for CTs.
Other options are getting a CTA & CTV which are CTs that look at the arteries using contrast during the arterial phase of the heart beat & veins during the venous phase of the heart beat using contrast. Most invasive is an angio/venogram where a catheter is inserted in the vessels down in the groin then threaded up to the neck & head to get an “inside” picture.
Please let us know if/when you find someone who is willing to help your son. I can’t imagine how frustrating your situation is. I’m so sad for what your son is going through & find it unbelievable that though his scans show elongated styloids & hyoid horns, knowledgeable ES doctors have declined to provide an ES diagnosis or offer for help.