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