My daughter is 14 years old. Her jaw has been locked closed for 5 months. Her teeth are clenched tight and she is unable to pry her teeth apart. All of her pain is on her right side. Her temporalis muscle constantly spasms. She also has pain in the TMJ region and the masseter muscle. A couple of months ago she had a stellate ganglion block that provided relief within 3 hours and lasted 3 weeks. She had some pain but was able to function normally. After 3 weeks she said she felt her jaw tightening up. Then, 3 days later it locked again with the same symptoms. She went back for another stellate ganglion block (twice), but this time it did not work. She have been hospitalized for a total of 4 weeks. We have met several doctors and no one is able to give us any answers. All of her blood work is normal. We've had rheumatology markers done as well-- all normal. CT and MRI are all normal as well. She has lost over 20 pounds because she is unable to eat, due to her teeth being closed. This is not traditional TMJ disorder. One doctor questioned trigeminal neuroalgia and then CRPS. I questioned hemimasticatory spasms, so they recently tried a botox injection in her temporalis muscle. That was about 3 days ago. We are still waiting to see if that helps. Also (although probably unrelated) she is also profoundly deaf. Cochlear implant placed on right side 8 years ago. She also has aortic ectasia and a bicuspid aortic valve. Doctors have ruled out the cochlear implant causing the pain. Do you have any other ideas? At this point the doctors aren't sure what to do.