I am feeling a little better since my last post. My head still hurts every day. My back is really bugging me where I had the spinal taps. I am not sure if that is normal. It feels really stiff in those discs when I attempt to bend over. Believe it or not-I called my surgeon 2 days after my ER visit...they have still not returned my call!!! I haven't made that easy for them either. I have called there at least a handful of times since then and left nice messages and mean messages and "you have got to be kidding me right now!?" messages and still nothing. This is frustration on a whole other level. I really like him as a doctor but if he can't return a call do I really want to count on him to cut my skull open and follow through with all of the care that comes after that?
It is so frustrating to find a doctor, I don't really want to start over. I had a hard enough finding him and I am still struggling to find a Neurologist who will treat me with pain management. I have actually been told that they don't treat CM/SM because they are "surgical only." Anyhow, the stubborn side of me wants to tell the surgeon to take a hike but the other part of me was really counting on him to help me. I just wish I knew what the future held.
One other new thing that has started is this bizarre crawly/tingling sensation that runs from the top of my head on the left hand side and down my cheek to my jaw. It comes and goes but it sticks around for a while. After ten minutes or so if just feels numb. You would think that would trigger a phone call back from the doctor but it has not.
For now, I am going to promote this month of awareness and hope I can make it through October before deciding on a Surgeon/Surgery/etc. My family and I are taking a trip to Disney for Halloween. I need this vacation more than even I know. After that I will give into this Chiari/Syringo beast. Until then I will kick and scream through it and think about the consequences later.
