Sleepless in Oklahoma

So, find myself waking up a lot worrying.  I worry by nature anyway, but I can't seem to get comfortable.  I know the "plan" is that Olivia needs surgery.  But I watch her run around doing so well a lot.  Yet, the images tell a different story.

She woke up at 2am screaming about her neck hurting (classic chiari pain in the back of the head/neck area). She always complains at bedtime.  Going to sleep is also an issue.  Every night constant "my headache is burning"  "I have a burning headache".  Seems like its harder and harder to get her to sleep as time goes on.  Used to be wear her out without a nap all day she would fall asleep faster.  Doesn't work so well anymore.

Also, I have made a decision to go ahead and see the doctor in Dallas.  The appointment had been pushed off to Dec 3rd.  I feel like I need a confident plan.  The neurosurgeon in Austin was wonderful.  However, he only offered 50% hope for the syringomyelia.  He also really wants Abri to be decompressed because he feels that her life will be riddled with headaches and medications that will quit working and the lifestyle adjustments of not moving her neck certain ways won't always work.

To add to the confusion, the neurosurgeon in Oklahoma called last week (yes thank you for getting in touch with us 2 months after the MRI).  So, he feels Abri is just fine and that Olivia is not.  He is willing to wait and watch Olivia because he stated that he "found nothing on her neurological evaluation".  However, I remember he really didn't do anything with her.  Not like the doc in Austin.  He said she really needs to be decompressed and that basically her entire spinal canal is full of fluid.  He didn't offer an outcome that I remember but I don't remember asking.  He does use an over the counter patch for the dura (which we are not willing to do at all) so that doesn't work for us.  I didn't burn any bridges and just told him we would be in touch.  I doubt he will call us back anytime soon looking at the track record :).

So, at this point my mind tells me to wait until summertime.  1.  It won't be cold and flu season in the summer and with skull and brain and spinal canal surgery, seems important to not be coughing while in recovery.  2.  Our insurance will be better (not because of Obamacare but because we will be on a more preferred network and because AFLAC will kick in for the hospitalization).

I'm learning more everyday.  It is so difficult because there are SO MANY stories of people who have waiting and their child has suffered severe consequences or even died from it.  The countless stories of people having surgery and still suffering is just as cumbersome to read about.  Certain days I put this story away and try to ignore symptoms and issues.  Other days, it overtakes my mind.  It is a battle of the mind really.  A battle that I give to God and remind myself it is his to work out.

We meet with a new neurologist (due to our moving and needing a closer doctor) on December 2.  I really hope that we like her.   She is a younger grad so I'm hoping for more up-to-date knowledge on Chiari.

As we walk through this time in our lives, I have a goal to draw more near to God.  He is the only comfort that an aching heart and tired mind can get.  He is the only one who gives answers and peace.  He is the only reason I get up each day and work harder to do better.  Who knew it was so hard to just keep your children alive?  Hugs and kisses to all my fans! :) xxxx oooo

Keep us in your prayers.  I am believing for something miraculous.

NY doc visit

So, now to go over all the information that I know from our doctor visit.

First I want to point out that the TCI facility was much nicer than the hospital.  (Although our only experince at the hospital was in the MRI facility).

Next I want to point out that our visit was so awful because on the way Olivia started complaining about her stomach.  Well, we went back to the exam room and the PA started doing our medical histories for the doctor.  Five minutes after being in the room Olivia (who warned me that her belly was hurting several times) threw up everywhere!  All over me all over the floor the chair ....everywhere.  This event repeated itself three more times before the doctor came in.  So, by the time he met with us, the room smelled of deadness and Olivia was dressed only in a towel!  Fortunately, I wore a brown sweater vest over my white shirt so at least God was with me there.  We did have a blanket in the car that we were able to wrap olivia in on the way out the door.

Now, the actual visit with the doctor.  He came in and informed us right away that the flex extension MRI's look normal for both children.  Yay.  He then went over symptoms and said neither of them need surgery.  We asked about Olivia's Syrinx issues.  We also asked about the sacral dysgenesis that the other Neurosurgeon had mentioned.  The doctor looked at us and said "do I have those scans?"  Personally, I was totally annoyed.  He ended up leaving the room to look at the scans in his office.  He reappeared to inform us that Olivia had tethered cord but he wasn't concerned.  Umm.  Hello is this the same doctor that emailed me how concerned he was over her case and how it is complicated and how it can require more than one surgery?  Why, yes it is the same one!  So, imagine my surprise when after a little more discussion about symptoms he completely changed his opinion to surgery and then proceeded to tell us how he did it.  He actually does the decompression and uses a metal plate over the area he removes.  He also goes through the dura and uses the patients own "skin" inside the skull to patch the dura back so that their body doesn't reject an outside material.  We asked him to go over our scans with us, but he refused.  He said he had seen all he needed to (uh ok, we would like you to show us! Right??).

I was so glad to be leaving.  Obviously, being covered in puke not ideal.  But mostly, because I could tell that this doctor was confused.  I ended up speaking with other people that have been seen by him only to hear similar stories about him recommending immediate surgery and then the next year on a follow up telling the families that their child doesn't have chiari anymore and just "pretend it didn't happen".  Personally, my opinion is that this doctor probably has too big a case load.  He may be a genius surgeon, but I need to know that he will not do the wrong surgery on my kid, because he is mixing up other cases in his head.  I know that sounds like a harsh wording but I have no other way to explain it.  The sad thing is, I don't dare express this to most folks that have used him because I do not want to hurt anyone and also I don't think that my experience is the only one people will have.  Obviously, there are tons of patients who love him and he did good work on.  It just won't be our family.

So, the visit was good because I got to see the great TCI place I have wanted to see and I also go to meet with a great neurosurgeon who is well published with Chiari.  I am glad God opended my eyes to the truth for our personal situation.  TCI is NOT our path.  Next please!

Goodbye NY!

We decided to go home differently.  Well, after paying over $50 in turnpike fees through NY and NJ, we finally made it through to VA.  

We knew we were getting closer to home seeing all the churches and crosses on the road .

The open road full of truck races .  And just weird cars in general.  We saw everything from weird colors, to cars covered in bumper stickers and even a van that was covered in grafiti!.

We made it to Tennessee  and drove through the major cities.  Of course when we got to Nashville we found this hot dog stand

     Yes, the sign really says "I Dream of Weenie".  So of course we had to buy some hot dogs.  Even though Halloween was closing in on us, while this seem scary they ended up being great!

We then ate at the ice cream shop right across the street from the hot dog stand.  It was called "The Pied Piper".  They make their own ice cream.  I can't remember what everyone got but I ate Apple Pie and it was so darn good!

So, as we approached Arkansas (only because my navigation was just 1.5 hrs off and what looked like we were staying just outside of Nashville ended up being well into Arkansas oops again this is the importance of the zoom feature on google maps).  We stayed in a comfort suites and slept in the next morning.  5 hours home was nothing really.  I told the kids it is like 3 movies and a break.

There is no place like home honey!

  Next post......back to decisions.