Hi, I’m very new to the site. I have had a long haul, although not as long as some of you, with my diagnosis. I’ve always been a teeth grinder and I always catch myself clenching my teeth. Several of the symptoms I have, I have had for quite some time. However, what got my attention was a non ending headache that started the first of December. I thought it was sinus related so I went to an Urgent Care. The Dr. didn’t believe it was sinus related because of the location of the headache. (across forehead and top of head) so, I was sent for a MRI. The results showed some white spots which is characteristic of ageing. (I’m a 53 year old female) I was then sent to my dr. who then sent me to a neurologist. The neurologist sent me for an MRA. (MRI of the blood vessels) The results showed no problems with the blood flow. At this time I’m being treated with medication as if I had a Migraine. Next, I’m sent for a spinal tap because the neurologist thought I might have a viral infection in the spinal fluid. The spinal tap came back normal. Neurologist #1 sent me to another neurologist who specialized in headaches. He gave me a medication to prevent the headache but nothing to address the headache that never went away. He explained that I would be on this medication for a minimum of 6 months and that it might take 2 months before I’d see results. Really? This headache was not affected by light or sound. I had it went I woke up and when I went to sleep. By this time, it was nearing the end of February. A friend suggested a chiropractor. I was willing to try anything…The chiropractor really listened to my symptoms and asked if I had been told that I might have TMD. He told me the symptoms and I said yes to all, clicking when I open mouth, grinding teeth, jaw locking etc…he suggested visiting my dentist. I already had a scheduled cleaning the following week. My dentist set up a special appointment to diagnose TMJ and a special scan, a CBCT. The results of the scan came back stating that I had flattening of the jaw where it went into the TMJ joint (hope I’m explaining it right) on both sides and also it stated that I had bilateral elongation of the hyloid- styloid process, Eagle Syndrome.
One question that I have … does anyone on here have both TMJ and ES?
Like I said before, several of my symptoms I have ignored for some time.
The symptoms I have include… sore jaw, sore neck, fullness of the ears, hard to swallow, a hoarse voice at times, shooting pain when I turn my neck, a non ending headache, numbness on my face so severe at times that I can not even touch my face. The symptoms for TMJ and ES overlap. I’m not sure what syndrome is causing what…
I visit an otolaryngologist at Duke Hospital next Wednesday. I really need some advice as to what questions I should ask when I visit. What should I look for in a doctor so I will know I have someone knowledgeable enough to deal with this rare diagnosis? Any advice is much appreciated!