So I am having some trouble here with finding a way to move forward in trying to get looked at for a possible diagnosis. I found out Dr Samji does phone consultations(I live in TN) but unfortunately I would have to have a non-contrast CT with measurements. All I have is a contrast CT with no measurements. For me to get the CT I would have to find a new DR. who would even consider running the test and hope my insurance would ok it. I live in an area that has very bad Doctors. I don’t think I could get a General practitioner or an ENT to listen to me they would just tell me I was a hypochondriac. I even tried a dentist office to see if I could get a panoramic x-ray but then I would still need a Dr. to interpret and they refused and told me to go to an ENT. How are you suppose to get diagnosed when no one will even look into it??? There was a Dr. Williams in TN, but I can’t find anything online about him having experience with Eagles. Honestly I am leary of Dr. in TN bc I went to Vanderbilt when this all started and in TN everyone worships them and so most Dr when they find out treat me poorly and tell me that I should just do what Vanderbilt said. I was also looking in Indianapolis bc my family lives there but having trouble finding anyone. I am just frustrated at all this, I want to know one way or the other.
You could try Dr. Cognetti in Philadelphia. He’s also very experienced. I know Dr. Samji is very picky about the scans he will look at but Dr. Cognetti might be less particular. His ofc phone # is two one five - nine five five - six seven six zero. He’s closer to you & could be a valuable resource. It seems silly for you to have to get another scan right away.
Thanks I will try that!
E.R. Was how I was finally diagnosed. My docs over the years always did neck MRIs since they were treating me for neck issues. E.R.s standard imaging for cervicogenic pain is a CT. Be vague…just tell them neck pain, ect. Doctors don’t like patients who know too much. Just get a copy of it to send to chosen specialist
Dr Cognetti would be a good bet, try him first, if that’s no good, then is it possible to get the CT you have re-read by a radiologist to evaluate for ES? It should be possible. All we can suggest is that you look through the info on Eagles symptoms on here, there’s links to research papers which mention symptoms etc., and if that fits with what you’re experiencing, print those off to take with you to see your GP and show them, it has helped some members… If you’ve had a scan recently then it would mean more radiation to get another CT done which isn’t ideal.
Good luck!
I contacted Dr Cognetti’s office. They said I could send it in scan. Yay!
When I first contact Dr Samji’s office I had a non-contrast ct scan report without measurements listed. I took the email from his office saying they required measurements to the hospital rad dept and asked them to re-read the scan and make an amended version with the measurements. I know they weren’t happy 
but they did it and I then had the required info to send to Dr Samji. Just a recommendation for anyone else in this situation.
Best of luck with Dr Cognetti and I hope all is resolved shortly for you.
HOORAY for Dr. Cognetti!! Glad he’s more flexible!!