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Friday, February 10, 2012

Results of the trip to TN

Well the trip to Tennessee went very well.  I attended the seminar hosted by the doc and there were a whole 3 patients there including me and we were all from out of state.  In his presentation this doctor actually mentioned hemicrania continua!  I was so excited because most doctors I have told my diagnosis to have never even heard of it.  And he has actually treated a woman with HC!!!  At my appointment I asked him how he would treat the facial pain.  He had me show him exactly where my pain was and he showed me where he would put leads and drew me a little diagram.  He is dictating a letter of medical necessity and we will have to wait and see what the insurance company says.  The staff said it usually takes 2-6 weeks to get the response.  It sure would be great if I just got approval right away but I don't actually expect that.  I really like this doc and hope that he can do the occipital nerve stimulator implant surgery.  He says I would have to stay overnight and they program it the next morning, then I can go home and do everything that usually triggers a headache to see if the stimulator is working, then they take it out the next week.  They make you wait 2-3 weeks before doing the permanent implant.  It was pretty ironic that the day of my appointment my head was killing me.  When my blood pressure was checked it was actually within normal limits.  That is high for me.  My BP is usually around 80-90/60-70.  I figured it was because I was in so much pain and nervous.  I was determined to go check Nashville out anyway so we did.  I always try to enjoy life with my family even when my head hurts so badly because I don't know when we might ever go back.