Hi everyone, I'm 32 year old female-my medical problems are complex and doctors don't know where to start. It's difficult for me to even find a starting point to get to where the pain begins...
At 14, I was diagnosed with glaucoma, caused by Axenfeld-Rieger's Syndrome ( http://en.wikipedia.org/wiki/Axenfeld_syndrome
) -this syndrome also causes abnormalities in the development of the teeth and jaw. I had surgery to reconstruct my jaw at age 17... involving the insertion of several pieces of artificial bone and screws to hold them in place.
The doctors suspect I'm having pain because of the surgery I had. My pain is mostly on the left side of my c-spine and radiates down my left arm. Occasionally I get shocks that start at the base of my skull and radiate upward around my head. Occipital Neuralgia is suspected because of the 'shocks', but the neurologist cannot diagnose it because I also have pain starting at the tip of my left jaw hinge at the ear-- it goes down the front of my neck and it is excruciating. X-rays of my c-spine have not found anything abnormal.
Also, I don't have insurance--so, finding care and help hasnt been easy, but I've found a few resources in Chicago that help me-- but things aren't progressing anymore--nobody knows what to do with me. I've been told to see.. possibly- ear nose & throat, neurosurgeons and oral surgeons... they 'might' be able to help me. Going through the channels of the public health system this will take a year!
I have been prescribed Neurontin 400x3/day and tramadol 50mg/3x day. The tramadol sometimes gives me awful headaches. Also, vicodin for breakthrough pain-- but this doesnt help much either. Heat and cold, stretching and breathing... they haven't helped much either.
I cry myself to sleep at night and I'm so frustrated that nobody can seem to diagnose me. I want to know what is wrong so I can be treated.
Having surgery for glaucoma next week also... I know this will make getting around very difficult in the coming months. Treatment for my neck will have to be pushed aside during my recovery.
I think the pain can't possibly get any worse.. but then it does. It is ruining my life... just kissing my boyfriend has to be done with caution. I want nothing more than to beat this pain. Life is wonderful-I want to enjoy it...