I’m so happy to have found you all!! So many doctors acted like I was crazy. Nice to know I’m not!
I live in Denver. I have a long history of TMJ, even longer history of Chronic Fatigue Syndrome. In early 2018, I suddenly developed throat pain on swallowing, right ear pain, right tinnitus, left eye pain, weird nerve pain up my scalp and in my left sinus. Started having panic attacks, thinking I had trigeminal neuralgia. Saw a neurologist, he found white spots on my brain, initially diagnosed me with severe cerebrovascular disease, and I spent a month thinking I was on the verge of a stroke. Subsequent tests ruled that out, but didn’t give me any answers. Went to a LOT of doctors. About a year ago, the fourth ENT I saw told me I had Ernest Syndrome on the right side, but that he didn’t treat it. Got a steroid injection, that didn’t help. Last November I lost consciousness in a restaurant bathroom. In January, I started experiencing really alarming dizziness. My osteopath recommended Dr. Hepworth, and he did a CT and Ultrasound. It was the ultrasound that revealed the Eagle Syndrome. Apparently my left jugular is completely occluded. Dr. Hepworth put me on blood thinners, which have definitely helped with the dizziness. So now I am getting more tests, moving toward the surgery decision. Being here and reading through the posts, I’m seeing the surgery is a lot more complicated than I realized! I’m so paranoid about nerve damage. I hate having these facial nerve problems, but the only worse thing I can imagine is developing more facial nerve problems from the surgery. I have a lot of questions, but I won’t ask them all here. Just wanted to start by introducing myself and telling you how glad I am to have found you, and to not be alone in all of this craziness any more!!!