I was first diagnosed with cluster headaches and then later with occipital neuralgia, which, with all I've read about it, I am convinced is my problem. I also believe it was my problem before my AN surgery since I had neck problems coupled with occipital headaches, which went into super overdrive and got worse and worse as I healed from my surgery. I believed my neck was hyper-extended during surgery and the occipital nerves, which emerge from the spinal cord at C2-C3 were stretched and damaged and healed improperly, hence the headaches escalating during the first year post op.
My plan now is for a nerve ablation of the area of C2-C3 if that is where the damage is, or higher up on the nerve--nerve blocks with local anesthetic will give my pain specialist a better idea of where to insert the device that will fry the nerve. It may end up that we actually kill the entire nerve, which will leave me with a numb head, which might be preferrable to triggering a headache anytime I take a walk, do anything that involves looking down like cooking or mixing paint on my pallette.
I plan on letting my Botox wear off so it doesn't interfere with the diagnostic shots. I want a permanent solution to these headaches so I am not tethered to a doctors office every 3 months--I am tired of planning my entire life around doctors appointments! We'll see!
Capt Deb