We made it

Could not get an internet connection last night, nor a phone connection - I was adrift in the big city!  HOLY MOLY!  We made it here - plane rides weren't too bad.  Nothing 2 Antiverts and 3 Dramamine wouldn't take care of! :) 

Checked into 'housing'.  It ain't fancy by any stretch of the imagination, but it's clean and we appear to be in a safe neighborhood, so I'm ok with it.  Even though our room has 2 twin beds and only one of us can come and go in and out of the room at the same time.  Living/dining/kitchen common area - NO FOOD out of the kitchen dining area!  NO POPCORN.  NO feeding the raccoons?????  (Guess that's a NY thing?)  We also have to share a bathroom - haven't done that in awhile! 

Met 2 other Chiari patients at the house.  It's so interesting/exciting/comforting/scary to meet others with the same affliction.  Our life can be so bizarre as compared to a 'normal' life most of the time that we were surprised to hear others speaking our 'language.'  One patient was going home today after spending six weeks here and one patient was having a decompression surgery today.  The woman leaving has had the same surgery in the past that Vanessa is having.  It was not successful for her.  She said she felt like she was being truly shocked almost all the time.  But this woman told her as far as surgeries go, this one wasn't so bad.  (After hearing her story - she knows BAD surgery and LOTS of it. An amazing woman.)

Went to Dr. Mogilner's office this morning at 9.  (Suzanne will love this - we were his first patient and he was an hour late - but we didn't say anything - it's not smart to piss off the fellow that's gonna slice your head open.  I may not be smart, but I do recognize stupid!)  Vanessa freaked him out a little bit when she told him how she makes electronic things short-circuit sometimes (that's why she doesn't wear a watch - they all die within a couple of days.)  He walked out of the room and asked to see her psych eval!  Once she got past that, he discussed the surgery and how it would be helpful.  He said that the implants are usually more successful for people that have pain originating in the back of the head and coming forward.  Hers originates behind her eyes and goes back from there.  He said there are implants that go behind the eyes - above and below that have shown some success. Vanessa didn't seem to want to jump on that wagon right away - having electrodes in your head, covered up by hair is one thing - having electrodes above and below your eyes is a whole different story altogether.   Tomorrow they will try the trial of implanting just the electrodes to the back of the head. (They will have to shave her hair from about middle of the back of her head down - hopefully won't be noticable when her hair is down.) The leads will come out of her head, taped to her body and connected to a portable transmitter.  Then she will test them until next Tuesday when the permanent leads will be implanted if the trial is successful.  Surgery is supposed to take place at 11 tomorrow morning.  From what I am told, surgery should take about an hour - then she will be in recovery most of the day and she will be released to come back to the house.

We appreciate your prayers - please keep them coming.  These people just don't seem to be responding to my southern charm???????  What is wrong with them. . . and they all talk too fast.  I don't hear fast!  Adventures, adventures.