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.

One week until the trip

Everything is set up for my visit with the doc in TN.  I have exactly one week.  Our room is booked and everything!  I am trying to stay really positive and hopeful that this time will be different.  I am going to a seminar on occipital nerve stimulator implant surgery hosted by the doc on Tuesday then my appointment is Wednesday morning.  I think we might even venture out and check out the city of Nashville a little while we are so close.

Yesterday was what I call a "couch day" because I basically spent the entire day on the couch with my ice packs.  It was the worst the evil headache has been in several months.  I could not even figure out any type of trigger that made it that way.  I am just so thankful for my wonderful family.  My husband and kids tried to keep me as comfortable as possible and I don't know what I would do without them on days like yesterday.  My sister also bought me this neat headache wrap for my birthday.  It is wonderful.  I wore it all morning while I worked today.  It stays in place really well.  Here is a link if you want to check it out:
http://www.amazon.com/AbsolutelyNew-AN905-Headache-Reliever/dp/B001R5CFB4/ref=sr_1_1?ie=UTF8&qid=1328046080&sr=8-1

Going to Tennessee!!!

After I decided to get the ball rolling with the new physician group, it really got rolling.  This doctor requires his patients to attend a seminar about the occipital nerve stimulator implant surgery before the consultation.  So I had a choice of which one to attend.  Of course I chose the soonest one, so I am going to Tennessee in a couple of weeks.  I had to send all my medical records and while going through them I realized in my medical records I have records from 3 doctors stating I need the surgery and the psychiatric evaluation stating I would be a good candidate for it.  Surely that has to be some pretty compelling evidence there.  I am so excited and nervous.  I am trying to be cautiously hopeful as the last time I did this I got my hopes up so high only to have them smashed.  Hopefully this will be much better this time around.  My official 3-year anniversary of the evil headache has come and gone, and I am so ready to get rid of it.