Question: Hello, I just joined this forum in the hopes of learning from others and sharing what I've learned. My story: two and a half years ago I was in a head-on collision. Since then, I have had
severe pain every day. At first it was from chest up, and has been localized to the base of my skull and below ears (jaw) and inside right ear for about a year now. I have seen many doctors, specialists, body workers. I have been told to work on my posture, my spirituality, to reduce stress, etc. It took ages to get testing done.
Whiplash was the continual diagnosis, when it wasn't my spiritual condition. : ) I've gotten a cervical MRI, a brain
CT scan, a sinus CT scan and a bone scan. The last two happened within the past four months. I have dislocated jaws, possible
osteonecrosis in the jaws, lots of infection and obstruction in my
sinuses (I need surgery for severe sinusitus), a deviated septum, a lot of inflammation. I am frustrated and frightened by the slow pace all this has taken and continues to take. Particularly if there is osteonecrosis, my understanding is that the earlier the treatment the better the outcome. Also, I'm scared about all the infection in my face. And no one has explained to me what the pain at the base of my skull is about. I've had all kinds of body work done, several rounds of PT. In addition to the sharp and burning pains in my head, my jaws hurt and pinch, I can't lay down in a comfortable position at night, and breathing at night is difficult. I have had several month long periods of daily nausea and
vomiting but thankfully haven't vomited in a few weeks. I have a terrible headache at the front of my head, feel all around weak exhausted sick lousy and getting worse every day. I've been on antibiotics for just over two weeks and they are not helping. I'm getting worse. It's
Azithromycin.I tried to find a patient advocate but haven't been able to find one who has a specialty in my area of symptoms. I appreciate my current doctor because he is the only one who understood the seriousness of my condition and the need for more testing. But I need more help. And I need help managing all this because I'm getting too sick to research and manage all this on my own. Does anyone have any ideas for me? Similar situation? Overlaps? Recommendations? Patient Advocate suggestion? Thank you warmly.XXXX