I'm so frustrated and demoralized from managing disabling cervical spine and head pain. Its been over 4 years ago that I had 4 craniotomies which lead to chronic head pain and now nearly 2 years that my neck flared up to an all time new level that I could no longer just ignore that area of my body.
I've tried all kinds of therapies. I've seen numerous specialists. My primary care physician placed me on long acting pain meds that lead to dependence and severe weight loss. Now I'm tapering off the meds and don't know how I'm going to handle the daily pain going forward. The trouble is, if I don't control the head pain its like smoldering embers that can easily initiate a much larger "fire" or headache that leads to hospitalization.
The last surgeon I saw just a couple weeks ago viewed my images and because the spinal canal is large and its difficult to calculate where it hurts and because of past histroy of complications from craniotomy---no one wants to touch me. They look for reasons not to help me. In otherwords, they do not see me as worth the risk. This experience is diminishing and demoralizing. Being zombied out from meds is too. going through a huge cascade of problems after the cranial surgeries to now have to continue to live in this very small world is the continuation of a long nightmare. This doctor and another doctor say they are doing me a big favor in not helping me,
I feel like I am worth helping. I fought hard to come back from all the complications from the cranial surgeries. I've contributed much and have much more to contribute. These doctors don't even know me and reject me without taking any time to seek answers. Sure, superficially their advise seems prudent. But I'm watching everything I've worked for disappear. Not just materials but my spirit, relationships, everything. Who wants to be treated like a "curse" or broken when in fact you simply need a diagnosis and specific management.
Anyone, gotten to this point and if so, what was your next move?