Wendy asked how I was doing and am posting this to update the group.
I am feeling much better, but with interventions. I am seeing a pain management doctor for occipital neuralgia type pain. Have had (3) bilateral ‘trigger point’ injections, twice at the base of the skull (a little maybe 1.5" above) and last time in upper cervical. They used lidocaine and prednisone and was immensely helpful. Suspect will be going for ablation if it doesn’t settle down. Would definitely recommend giving the injections a try for those that have skull base pain and wish I had known about this while waiting for surgery (first shots given at Neuro’s office and they would continue them, but was already on to seeking RFA for the occipital nerves at the pain management doctor).
I still have intermittent (daily) head pressure (and I ‘think’ it is pressure … can’t tell for sure if it is internal or external) and on both sides and/or alternates (ugh). I reduced my salt and that helped. Will ask the neurologist if can trial diamox as a data point, but aside from going back down the route for IIH, have done everything else. And that may come in the future, but am needing a break from exploratory Dr. appointments.
I did have high B6 (March) and some suspicions it has played a role in my dysfunction. It is a tough one as the neurologists recognize it can be a problem, but will say nothing to do but wait it out. There is a biopsy (lower leg) for Small Fiber Polyneuropathy which I have not had as those symptoms are improving. Was taking a B complex and multi (Trader Joes), so nothing unusual.
Symptom wise, besides my head, had weird nerve(y) feelings in legs, arms and torso, muscle weakness, clumsy hands, high heart rate (fluctuating), eye fatigue, heat intolerance, no sweating… a host of weird things that didn’t have before and wasn’t related to my styloid as best I could tell. (I was on gabapentin before and after surgery … so it would have masked some symptoms).
And am also being treated for MCAS (no positive testing still)… which can cause head issues among other things. But I am moving forward )). My case is not a great example as I do have other issues causing similar symptoms and they are hard to parse apart. However, I no longer feel like I have a fork in my neck 
and the tightness from styloid to hyoid is gone. Shoulder issues diminished to mostly nothing. I am grateful for the surgery with Dr. Hackman. My neck continues to be overly tight and that may just be my lot …I seem to have inherited a twisted C1/C2 … my son has the same and suspect my grandfather did as well. So working towards getting as functional as I can for me.
Hope all are moving forward or moving on ))).
