This is gonna go down as one of the worst days of my life & also a Ray of Hope

Now you just know a day from hell has to be a long post.  Called the doctor this morning and she said, "Trial failed, come in at 3 to get the device out."  We tried so hard NOT to get our hopes up, but apparently we had because I can't remember the last time I felt this low, possibly never.  I don't have the words to explain how devastated I felt and you know I have lots of words.  We both cried.  One would cry while the other was strong, then we'd switch and the other one would cry. Vanessa tried her hardest to talk herself into believing the pain was better.  She would turn it off for a little bit and then turn it back on and try to convince herself the pain was decreased.  She felt like such a failure for having cost so much money and time to go through this procedure and then it not work.  More tears.  I literally have never prayed as hard as I did last night.  At one point, I got down on my knees and prayed at Vanessa's bedside. I was too stunned to even think. 

We went to the Dr office at 2:45 and waited and waited, then the Dr came in and said, "Well, we didn't think this would work anyway because your pain starts in the front and goes to the back, it usually only helps people that the pain starts in the back."  They couldn't have mentioned this before we flew here?  Then he grabbed a sterile pack, yanked off the tape, snipped the stitches and yanked out the leads. Vanessa never made a sound.  I was so proud of her. I offered twice to pinch him.  He said, "You can wash your hair as normal" shook our hands and said we were through.  (Mouth hanging open moment.)  

I had emailed the Nurse Practitioner of the neurosurgeon on Saturday to ask if it were possible to get into the Chiari Institute while we were here.  She said she would send a referral, but she doubted it because it usually takes months to get in.  Maria - the nurse practitioner called a little after 8 and said to check my email.  I checked the email from the Chiari Institute it said usually a patient gets their whole packet together, including notes from their neurologist and a current MRI - neither of which Vanessa has - then that packet is presented at the doctor's meeting every 2 weeks.  My heart sank.  Hang on to your drawers. . there was a 'but' - she said since we were from so far away, if we could get her records together, fill out their lengthy questionnaire (which is actually 3) there's a chance she could be seen THIS THURSDAY if she could get approval from the medical director.  Vanessa called her and explained she didn't have a neurologist, nor a current MRI and she was claustrophobic due to a MRI break-down with her in it. The woman was very curt with Vanessa and seemed extremely annoyed (a way of life here!) that we were so unprepared and said it was impossible to get it done without having a neurologist referral - then she hung up.  (More tears) I emailed her and told her we'd be willing to do whatever was necessary to get her seen. Within 5 minutes she called back and asked for a fax number.  Of course we have no fax number - duh.  Vanessa told her we didn't have one because we were staying at the Variety House (That's a whole 'nother story right there.)  The woman was familiar with the VH and said there was a fax machine in the basement and the super was in charge of it and she knew the number.  About 15 minutes later, the super came upstairs with prescriptions for MRI's, 3-D cat scans, x-rays.  (Ok, I take my nasty thoughts back about her - she's jumping through hoops to get Vanessa seen.)The MRI was at a STAND UP MRI!  Vanessa and Bob have both wanted a stand up MRI for ages.  So we called the place and asked when she could get in (after explaining everything) and the woman said, "How about 7:45 tomorrow"!!!!!  I about fellout!  Next Vanessa called the hospital and asked about x-rays & CAT scan.  The woman stated, "I can't hear you (then a horn honked)" and she hung up on her!!!!!!!  I'm gonna start taking names and I'm gonna get Betty Jo's church to start praying for half this city.  Inside joke.  Vanessa called back and the woman answered again, telling Vanessa it was very rude to have the horn honking in the background????? I'm gonna have nubbins for teeth by the time I leave here - either that or need surgery to put my jaw back in place cause it's always hangin open.  The less-than-nice woman told Vanessa it was considered walk-in, to come by the hospital anytime between 8 & 4 to have it done. 

Could not get prior authorization from Tricare for the MRI (which I'm not sure we need) because they are closed for the holiday so the MRI was delayed until 9:45.  The people at the MRI place are also bending over backwards to get this done in time for Thursday.  Soooooo as it stands now, Vanessa is set to have 6 MRI's tomorrow, plus x-rays and a 3-D CAT scan.  It's gonna be tough day tomorrow but there's a ray of hope.  Vanessa is pretty sure she'll be able to handle it after getting to wash her hair for the first time since last Thursday.  More to follow. . . .