Grrrrrrrrrr - A New York minute is not near as fast as I've heard it is.

Vanessa called yesterday to inquire about the neurosurgeons meeting and it's outcome.  Did NOT hear anything yesterday and have not heard anything today.  Guess we'll call again on Monday.  All this waiting has caused me to be just a touch perturbed - picture attached.

Waiting is not my favorite.

Well it's been 12 days out of the 14 of 'every 2 weeks' and we still haven't heard anything.  Don't know if that's a good sign or a bad sign.  Maybe they met today and we'll get a report tomorrow.  It sure is hard to appear as if all is well with your life while waiting on a decision that could completely change it's course. 

Started the paperwork for getting Vanessa's military ID card renewed today - it was amazingly easy!  I was very pleasantly surprised.  Now. . . . to talk her into going down to the local Social Security office and having a chat with them.  Guess I should be satisfied with one miracle at a time. 

Got Halloween candy at the commissary today. . . thereby making it easier for some members of society to survive.

Still waiting

Still waiting on the neurosurgeons to have their meeting and give us a call.  I have no idea which option Vanessa will choose, but I will support her, whatever it is.

Where is the Fairy Godmother when you need her?

Been home 24 hours now and the magic answer has not come yet.  Does someone out there know the magic answer?  Guess we just wait until the doctor contacts us to make a final decision. 

Was soooo wonderful to sleep in my own bed - that's not harder than the floor and to lay my head on a pillow that's thicker than seaweed.  Grinned from ear to ear when we walked into the restaurant last night and people actually smiled at us and appeared to welcome us to their establishment.  Who knew I loved the South so much. . . oh wait. . . that would be me!  The land of sweet tea!

changed settings

Just changed the settings so it's much easier to leave a comment now. 

The decision lies between the rock and the hard spot

Was at the Chiari Institute at the prescribed time.  Filled out all the paperwork, dictated the usual history to the PA, she did some tests we hadn't seen before - thought we'd seen them all.  One was to see if Vanessa could bend her thumb back to touch her wrist - she can.  The other was to check how far backward she could bend her knee - quite far.  Then came the neurosurgeon.  He asked bunches of questions and explored her MRI films.  He said there is a spot on the left side of her cerebellum tonsils that is being compromised.  He said it was clear her brain is still too far outside of her skull, but that will always be like that.  There is NO cure for Chiari and as patients age, the disease usually progresses.  He explained they can go in and remove bone and tissue from the left side of her skull to give more room for her brain to function properly.  He would also cauterize her cerebellum tonsils to shrink them some.  Surgery 'probably' will stop the tremors on her left side, may stop the left pupil from becoming so large during a headache, would stop the numbness and tingling on her left side. It would probably stop a few of the other symptoms also. It 'could quite possibly' stop a 'good bit' of her pain - no guarantee.  But he cannot stop all of her pain and anyone that tells her they can are lying.  He said she will most probably be on some sort of narcotic for the rest of her life.

This would be her 3rd decompression surgery and each time you open the neck and skull up, the chances of needing a shunt increase exponentially.  After the first decompression, almost no one needs a shunt, after the 2nd surgery, very few need a shunt. . . from the 3rd surgery on, almost all patients need a shunt. . . which adds a whole new host of problems.  Also each time you open the neck up, it weakens the muscles and the stability of the brain and neck, causing more hyper mobility and since Vanessa is already exhibiting some signs of hyper mobility, there would be an increase.  (The finger to the wrist thing and the knee thing.)  If the neck becomes too mobile a fusion is required and then you lose 80% of the flexibility and movement in your neck.   

He also told her that studies have shown if you have been out of work due to a disability for over a year, the odds of getting off of heroin are greater than going back to work. At this point Vanessa was in tears. 

He told us to go home and await the results of the doctor's conference occurring every two weeks where the doctors of the practice discuss new cases. They will all review Vanessa's case and see if the benefit of surgery outweighs the risks described above.  Then she has to decide if she is ready to have her head opened up again and risk the consequences. 

So does one choose a surgery that could 'possibly' help or could 'possibly' make things worse, when they are already unbearable.  Tough choice.

SHE'S IN!!!!!!!!!!!

Vanessa has an appointment with the Chiari Institute at 9:00 tomorrow morning.  This is the number one Chiari treatment center in the world!  I can't believe she's in.  Maybe God had something better planned for her.  Thank you God.

Another Day

Took everything over to the Chiari Institute first thing this morning.  She said we should know something in 2 hours.  Waiting. . . . . and praying.

A long day

We sat out this morning hoping to get some of the MRIs done and possibly the xrays.  The MRI place was about 20-30 minutes from house where we are staying - got a cab- another $30!  Got there and they took Vanessa in to get the MRI, then asked if I wanted to go! It went so smoothly with it being a stand-up MRI.  Was so much easier for Vanessa.  The machine didn't move at all so there wasn't that scary thing to deal with.  The did 2 MRIs and since Vanessa was so determined to get them all done today, they told us to go to lunch and then come back.  She got ALL FOUR MRIs done today!  I was so proud of her.  I can't imagine sitting through that - it was 5 hours of MRIs.  She never complained, was still smiling when we left there for the cab ride back to the house (another $30).  On the way she decided we had enough time to go to the hospital to get the xrays and CAT scan and she wanted them all done today so that's where we went.  She signed in and about an hour and a half later she was completely done.  She got everything accomplished today that she had to do.  All of the tests are done. . . now the waiting begins. 

I'm a big doofus. . . I just re-read this and realized how lucky we are to have insurance and only have to pay for the cab ride.  Someone told us the MRIs she had today were $12,000.  What am I complaining about!  Geez.  Sorry. 

We're going to bed now. . . it's been a long day.

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. . . .

Monday morning

I'm sitting her listening to Vanessa whimper in her sleep.  Occasionally her body will jerk as well.  Neither of us slept very well last night.  I kept having nightmares and waking up.  Would pray until I fell back asleep. 

Vanessa says she's having 'shocks and tingles' down her arm.  That's not supposed to happen.  Will call the doctor when Vanessa wakes the next time.

This is one of those days that I wonder if God over-estimated my strength.

Maybe a miracle will come today.

We had high hopes today would be the day that it started working and she would have a new life, or even a life.  So far today no difference.  Pretty discouraged.  Hoping and praying for a miracle.  Maybe she's just one of those that it takes longer to work on. . . .

Not the best evening

Vanessa is having a tough evening.  She seems very 'woozy' and says her head is hurting more than usual.  She says she has incision pain, but her regular pain is hurting more.  She says it feels like the 'cord' is shocking her, but she's trying very hard to keep the device activated all night so the test will be valid.  She could use a few extra prayers tonight if you have them.

Thanks, patty

Another day

Vanessa has still not noticed any difference in her pain yet.  She's been having problems all day with the device turning on and off without any prompting from her.  She finally broke down and called the rep from the maker of the device.  She drove out and changed the external unit out to see if that helps.  The trial may have to go on a bit longer because due to the malfunction of the unit - Vanessa has not had enough time for the unit to make a difference. 

We tried to get out for a bit today.  Called a cab to take us out to a grocery store and restaurant.  He dropped us at a restaurant/bakery with a drug store across the street.  Vanessa tried to eat lunch but was sick and couldn't eat a bite of it.  We got it to go, went across the street to the drugstore, got stuff and came home.  She's resting now.  Hopefully later today a fantastic change will occur. 

oh- by the way - the firemen were back at 5 this morning.  The house alarm system is off until 5 o'clock this afternoon while the alarm people check the system out. 

Holy Moly!

Hey folks out in blogland. . . you'll never believe who we had a visit from tonight!  I took pictures so you'd believe me, but I left my connecting cord for my camera at home, thus you're just going to have to believe me until I get them posted. 

I was sitting in the living room and heard a loud 'POP' from in the kitchen area.  Then the house alarm went off and I heard the women downstairs saying there was a fire on the first floor.  I went to the back and woke Vanessa up, then went downstairs to see what was going on.  We did not smell any smoke and couldn't find anything out of the ordinary, but the alarm panel was saying 'fire on first floor'.  I had settled down and come back up stairs when I heard sirens and saw flashing lights out the front window.  A big 'ol firetruck full of New York's finest caming trundling along!  In comes firemen in full gear!  The little fellow had to carry an oxygen tank and an axe and pick - they looked bigger than he was.  They said the call came in that there was a fire on the second floor so they went all through the house and climbed up into the attic, went down the fire escape, checked the basement!  It was pretty cool, even if none of them will EVER make the cute fireman's calendar. 

Vanessa was not amused I grabbed my camera to take pictures. She REALLY was not amused when I told her to get in the picture so ya'll would believe me.  The head fireman pointed out they had a bodacious truck outside that I might want to get pictures of so ya'll would believe me!  He's a smart fellow.  Vanessa just doesn't see the genius in most of my plans! 

Friday - mid day

Vanessa did pretty well through the night.  She kept waking up for short bits and trying to get comfortable.  I tried to get her to take a pain pill about 3 am but she didn't want to.  They put the 'sender' unit on the side she normally sleeps on, so that is giving her some discomfort.  This morning she unhooked the transmitter for awhile because the constant 'tingling' was making her sick.  Just a few minutes after she turned it off she began to notice how badly the surgical site hurt.  Guess that means it's working on that area.  She says she hasn't noticed any relief to her 'old' pain yet.  But her brain is still swollen so she wouldn't be able to tell yet.  She finally gave in and took a pain pill about an hour ago.  Now she's sleeping.  Hopefully she will rest comfortably for awhile. 

I plan to call a cab in a little while and find a grocery store.  When the surgery nurse called a little while ago, Vanessa told her she planned on going to the grocery store a little later and the nurse responded, "Oh no you're not."  Vanessa assured her she was.  The nurse informed her she was not allowed to do that.  She was to REST all day.  She wants to get out and see the sights before we leave the city.  Hopefully she'll feel up to that one day before we leave.  I'm just so afraid of germs getting into her surgical site.  I hear brain infections are a real pain.

Thanks for your prayers and good thoughts.

To post

I've had a few emails saying folks couldn't figure out how to post.   Go to the bottom of the post where it says "0 comments" or "2 comments" and click on that.  It will bring up a screen with a 'post' box in it.  That's my daily service bulletin.


OH, OH, OH - Just saw this commercial on tv. . . . "I lost 40 pounds and didn't have to use special food or count calories.  How did I do it?  I BREASTFED MY BABY!"  Then she shows her skinny self with her baby.  I laughed until I had tears coming out of my eyes!

They call it Stage 1

She made it!!!!!!!!!!!!!! Surgery was very quick.  She was in the operating room only about 45 minutes.  The surgeon said she did really well and the surgery was picture-perfect.  Saw her in recovery and she was awake and talking!  The representative from the makers of the implant unit was there and I got to see her hook the leads up to the sending unit.  Then she hooked the receiver unit to the programming unit - which looked like one of the portable scanners they use at Sam's or Walmart when the item is too heavy to get out of the basket.  She turned each side on and programmed them to a level that was bearable for Vanessa.  (OK, sooooo you know there has to be a side story, because Vanessa and I can NEVER go anywhere without a side story. . . here goes.  In the bed beside of her there was a fellow who was shot last night by an 'unknown perputrator'!  He kept saying he is a chocolate-covered bullet because they did surgery to get it out and decided to leave it in him.  He was shot in the stomach and the detectives were questioning him and trying to figure out who did the shooting.  It appears he 'manages' 2 women.  We did not hear what about them he manages.  From what we could overhear - cause you know we were listening. . . he was in his 'girlfriend's' car going to see another girl that was in the hospital. (Every woman reading this right now is saying, "Yeah right.")  He was freaking out because he figured his 'girlfriend' was going to kill him for getting blood in her car and she has a gun and she would use it, but it wasn't her that shot him. He was not aware of anyone that 'had a beef' with him.  He also appears to have loads of friends but knows them by first name only. . . with the exception of his cousin's cousin  - Sha-nae-nae Wilson.  By this time my back was beginning to hurt from craning back so hard because he was starting to mumble due to the morphine. Seriously, couldn't they have held off on the drugs for a few minutes?)  Back to Vanessa. . . . they were amazed how well she handles pain and how much medicine it took to knock her out. The nurses were awestruck that her lipstick stayed on during the entire surgery.  She is 'not at all pleased' that they shaved wwaaaayyyy more hair than promised, but if it works she will forgive them.  At this point everything is too swollen and aggravated to know if the pain has lessened any.  They say the swelling in her brain should go down in about 48 hours.  She was discharged a couple of hours after the surgery and I took her back to 'the house.'  She took a good long nap and then got up and ate some supper.  There is a new Chiari patient in the house today so they compared a few notes and surgery stories before she was worn out.  She's tucked safely in bed now and we're hoping for a peaceful night and sleeping in tomorrow morning.  Thank you each and every one for your prayers and good thoughts.  They are felt and appreciated.

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.

It's down to the wire now.

Getting everything ready.  Been trying for 10 minutes to find the address of the hotel where we're staying.  Ever notice how when you are annoyed already - EVERYTHING in the world annoys you more? 

Almost finished packing.  Just have to figure out how to pack a LARGE suitcase full of stuff into a small suitcase.  Piece of cake.  Made a list of all the things I need to do.
1. Print tickets - done.
2. pack suitcase - almost done.
3. Check extra close for chin hairs and pluck the really long ones - done.
4. Do Laundry - done.
5. Get airplane snacks cause those cheap suckers won't give them any longer - oh crap, forgot to do that.
6. Waste time making silly lists - done.
7. Try very hard not to panic - working on that one.
8. Try to keep Vanessa from flying completely apart - working on that one too.  Actually she's doing a really good job.  I'm very proud of her. (Course she hasn't seen this stack of new patient paperwork she has to fill out.

Alright I really have to go finish packing.  Tomorrow is the start of our GREAT adventure.  Look out New York!

Rick is such a help.

Just a short post to let everyone know Rick should heal nicely in the next week or so.  He had an unfortunate accident this morning when he pointed out that the 'ancient tree' I spoke of yesterday was not ancient, in fact it was probably almost the same age as me. 

Ready. . . set. . . . almost go. . .

I have most everything done in preparation for our trip.  Hotel reservations are confirmed - was a little worried for a bit there, could not find out availability until today.  Was sooo relieved to hear we're in.  Have secured a car service to pick us up at the airport.  Housing knows what time we are coming so someone will be there to let us in. 

Instead of getting the thousand little things done (like getting money, doing laundry, packing) decided to sit on my back porch, close my eyes and just listen to nature.  A very calming sound.  When I opened my eyes I was staring at an ancient pine tree that I'm sure has withstood many, many difficult times.  Wow, wonder who put that thought into my head?  What a comfort, thanks Lord. 

Since this journey started 13 years ago, I've had a lot of less-than-respectful talks with God but when I've needed it the absolute most, I've never NOT felt his presence. From somewhere (where else than a higher power) I have always been given the strength and the resolve when I most need it.  My belief is a little unorthodox (don't snort - it's not polite) but I do believe.  Of course if you happen to mention, "This too shall pass" or "Just pray harder", you can rest assured I will be using that strength and resolve to not slap the crap out of you.  If nothing else, going through all of this has taught me what NOT to say. . . well when I take the time to think.  That's all for of the deep thoughts today . . . battery is low.