I'm still relatively new to this group. In one of my posts, I shared that I have a connective tissue disorder called Ehler's Danlos Syndrome (all of my joints dislocate). I've had several surgeries on my jaws to rebuild them because they dislocated so often and tore. The surgeons have removed muscles behind my ears (fascia flaps), dermal grafts, and artificial joints. I ended up not being able to open my mouth so, my left jaw joint nearly totally ossified closed. Also, both joints (but, more on my right jaw) were covered with copious amounts of scar tissue. The surgeon said that she could not get a lot of the scar tissue out because my nerves and blood vessels were wrapped in it. She replaced both jaws with mostly titanium and plastic. I am having so many problems getting doctors to order the right tests (with proper protocols) and the technicians to know how to do the testing correctly (following the protocols). I have spent so many years trying to get diagnosed. For many years, I've had serious symptoms: apnea (while awake and asleep), heart arrhythmia, passing out or nearly passing out, headaches, difficulty swallowing/choking, unstable hyoid and tracheal area with pain, tinnitus, neck pain, inability to be upright consistently for long periods of time, clonus down both arms and legs, instability at C1 & C2 areas, vomiting, nausea, abdominal distension, neurogenic bladder, etc. If I stretched my jaws or turned and moved my neck in various directions, it would set off a cascade of bizarre symptoms (vasovagal). Apparently, the MRI the doctors ordered did not provide much information. I can only open my mouth about 12 milimeters...which is not very much at all. In August, my neurosurgeon pressed on my neck at my C1 area and something popped and shifted; now I can barely turn my neck at all. Yikes....I may have more than one thing going on.
My question is: because I have a complex case, do you think I could just go to one of the ENT's who specializes in Eagles Syndrome and get him or her to order the correct testing for me? I don't want to arrive for an appointment with an ENT for the first time with testing that was done wrong or the wrong tests. My primary care doctor wanted to just to a few regular x-rays to rule out Eagle's Syndrome...and I'm not sure that a regular x-ray would pick it up...or would it? I've already been to so many ENT's who upon examination did not notice anything wrong, or saw something wrong but, did not know what to do, or said, Eagle's Syndrome is not even a "real medical condition." But, I guess you Eagle Syndrome veterans know this drill all too well.
Thanks for any support and help:)
Peace & Blessings