Went to see my primary doctor and explained i was still having the same symptoms as i have been for t years now told her none of the ent’s i have went to seem to push for any further testing besides assumjng its tmj, so she has requested another cat scan be done amongst mri and such if needed. Explained that I have been doing my own research and that maybe its possible its eagels so asked if my styloids could be measured as well. She agreed to all of this and has said she will get me to the doctor i need to get to even though it may be a process. We even agreed that if i have to create a pattern i will come back monthly to complain to get testings done if insurance says no this time! Now just waiting on the call to set up this cat scan to get things started.
So sorry for your suffering. It’s wonderful that you have a PCP that is willing to work with you on this. There are several doctors who will do a phone consult with your scans. One is Dr. Samji in California and the other is Dr. Costantino in New York. Not sure if you have vascular issues, Dr. Costantino would be the one for that.
That’s good news @Sara ! Dr Cognetti would be a good doctor to get a referral through to also…I hope the insurance company don’t cause to much interference!
Thank you both! I did mention Dr Cognetti to her as well since eagles is one of his specialties. As soon as i get these scans and see what they say i will set up a phone consult with him as a second opinion since no one around me knows anyone about this. I will keep you all updated!
Super great news that your PCP is on board & willing to see you through to a diagnosis & even treatment, @Sara! You are one of the fortunate ones as many PCPs just drop the ball like the ENTs & other specialists who have no clue about ES.
I am so greatful! Plus my 2 month “flare” up if thats what you want to call it finally broke just dealing with slightly painful swallowing at the moment.
Long may the reprieve last!!