Hello fellow Eagle sufferers. (I am not naming the doctors here but the doctor in Philadelphia is on the list. I am quoting from my appointments so I don’t want to be libel - if that’s possible. )
I have been offline for a while in a holding pattern waiting for my scheduled appointment with Dr. C. in Philadelphia. The appointment with Dr. C. was yesterday via video conference. I also had a face to face appointment today with a surgeon in Manhattan, whom I will call Dr. NYC. Though Dr. NYC has done 40 ES surgeries or so he’s not happy about being listed as a doctor “on some blog somewhere who does Eagle surgery.”
It was my the first time in meeting Dr. NYC. He’s a skeptic but after feeling down my throat with his fingers to feel the styloids poking my throat, not once, not twice, but three times he said that “he’s beginning to believe that I have ES.” (Needless to say that my throats now is very raw). He does intraoral surgeries where he breaks off the tip, though he would do external " if I wanted." I told him that I had a consult with Dr. C and that Dr. C. said that he has done hundreds of ES surgeries. (That made him laugh - in an incredulous way - as if there are that many people out there who need the surgery).
Dr. C. said right off the bat that he believes that ES exists and is treatable through surgery. He said that he use to do both intra-oral and external but now will only do external. His belief is that if the styloid is only partially removed and there are still symptoms, there is no way of knowing if it was successfully. If it’s fully removed and there are still symptoms, then he can say definitively that it’s something else. Before the consult I sent him all of my records and included a cover letter that outlined all of my symptoms and the tests I had and doctors I’ve seen. (Since the end of July 2018 the number of doctors and test is at 29!). He said that the outline was very helpful. Since he has done volumes of ES surgeries he must have a better sense of what’s really happening with the styloid on the imaging. He said that mine are both very thick and the left one is very close to the bones in my spine.
If I had to make a decision last week I would have said that I would have done introral - both at the same time. I am so tired of my throat feeling like onset flu symptoms. After talking with Dr. C I will have him do the surgery. To be fair, good head neck sugeons can do the surgery and both said I am a candidate, but we all want to feel believed and that able and willing to do the surgery- not just if I want.