I hope that you do get a diagnosis at your next appt, then at least you know what you’re dealing with…I think you’ve seen the Doctors List, but here’s another link in case:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Quite a few people have seen Dr Mark deLacure, NYU, New York City (has done surgery on 2 or 3 members) https://nyulangone.org/doctors/1326049453/mark-d-delacure
Otherwise in PA Dr Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 has done many successful surgeries on members. He does do phone consults so you can send your scans to him, but he doesn’t do ES surgery all the time so has a longer wait time. (David M. Cognetti, MD - Jefferson University Hospitals)
Also in PA is Dr Jason Newman, Dr Jason Lee, U of Pennsylvania, 800 Walnut Street
18th Floor, Philadelphia, PA 19107, (215) 829-5180 who is also very experienced.
(head and neck, skull base surgeon) Jason G. Newman, MD, FACS profile | PennMedicine.org
And Dr Hackman in NC has done lots of surgeries recently. UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484 (Does intraoral robotic surgery - removes styloid to skull base & stylohyoid ligament AND external surgery). Trained Dr. Patel, who is now doing ES surgeries.
Dr Samji in CA does also review scans, and we’ve had members send theirs off for review to online radiologists when they didn’t get a satisfactory report/ correct diagnosis. Plus it can be worth asking the radiologist who did the report to review it & check styloid measurements, supposing they miss something.
Let us know how you get on…
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