More on Instability, Syrinxs/syringomyelia and surgery in 30 days

So, we took Olivia to get her CT scan done.  She was NOT happy to be going :(

Dr. George ordered the scan in order to check her anatomy for "instability".  He did not specifically say anything about the retroflexed ondontoid that I have wondered from the "hill" on her MRI.  I'll be asking him about that at our next visit, scheduled the day before surgery.

Olivia did GREAT for the CT.  NO SEDATION!! That's a first.  I wish the health insurance companies would just pay for the scans all at once instead of having to go 4 different times!  Here is a picture of her during the scan:

                                                              So brave with Daddy

Abrianna is scheduled for a craniectomy with great hope that she doesn't need anything else, but we are having to give consent for more things.  I guess when you have a surgery like this you have to consent to let the Neurosurgeon do whatever it takes during surgery. 

Olivia is scheduled for a craniectomy, duraplasty, and laminectomy in order to get her Chiari Malformation Type 1 and Syringomyelia under control.   I have requested that they harvest Olivia's own skin for the dural patch rather than use a foreign patch that could cause complications if her body rejected it.

Both surgeries are scheduled for 90 mins each.  I am thinking that Abrianna's should be faster should they only have to do the 1 thing. 

 For those who are new to the blog and havn't seen the pictures posted of what the MRI looks like currently for Olivia:

Her Syrinxs are very large.  So large, they saw them on the CT scan.  Here is what Olivia's CT scans looks like:

3D is so cool Right?  Anyways........According to Dr. George, Olivia's bone anatomy looks great and he is not worried about instability.  I am going to specifically ask him about retroflexed ondontoid at pre-op appointment the day before surgery.  Praise the Lord for good news finally!  But I looked through the images on the CT scan several times and I could sort of see the syrinx when I adjusted the brightness but I definitely had to know what to look for because I really can't see it on the images at all!

That makes me even more concerned for her because of what she has gone through.  I remember when she was 3 she would say all the time "I'm not feeling good" and "My neck is beeping".  :(

Well, both girls are scheduled for surgery on June 20th in Austin TX with Dr. George.  It is extremely stressful. 

I'm looking forward to having this fixed and moving past this.  Every year I say "I just have to make it to Christmas this year".  Currently, I just wan to get through July 4th.  That is two weeks from surgery and Independence Day.  I am going to celebrate July 4th as our independence from Chiari.  Everyone says that surgery is NOT a cure and I know that.  However, knowing that we are working to get rid of the syringomyelia is independence.  Working towards reduction of neck pain and headaches for Abrianna as well is independence.  Freedom from disease.

I am being told this is going to be harder on me than my children.  I sure hope so.  Currently, that is definitely the case.  Can't even look at them without my heart sinking in, with a sharp pain that immediately jumps into my throat.  I swallow away the tears so that I do not worry them.  Sometimes they look at me and say "what's wrong mom?"  and I just tell them "I have a swallow stuck in my throat". 

Amazing that your kids can see right through you right?

Well, that is the update for now. Here's a pic of my Chiari warriors with their sisters.  :) 



Back from Austin TX and making progress with Dr. George

Well, it was definitely a big trip.  We left Tulsa at 2:30pm and we didn't get to check into our hotel until 1:30AM!!!  Yes, really.  Apparently, President Obama, President Clinton, and President Bush were visiting FT. Hood, so Texas decided to shut down the highway 36 miles from where we needed to be in our hotel.  We knew we were going to get in late, about 11pm but not like that.  Thank goodness we were able to "backwoods" off the highway and follow country roads to get around.  A 50 miles detour got us there.  I feel sorry for the rest of the people that probably slept in their cars there!

So, we went to see the doctor.  We were there on time, but his office is crazy busy.  He was in surgery that morning and was two hours late.  But his staff is wonderful and we waited with good company.  I was able to meet a lady I had been chatting with on Facebook who also has two boys dealing with neuro issues.  One has a large arachnoid cyst and the other has chiari. 

Dr. George came into the room.  He had a tag-a-long Resident doctor with him.  He advised that Abrianna will have a wonderful outcome after the decompression.  She has what he called "classic" chiari and tussive headaches.  He explained tussive headaches are not just from coughing and it is from the vessels dialating with activity due to blood pressure increasing.  So, since there is no room in her head for brain vessels to expand, when they do bad headache that subsides quickly as bp goes down.  She has been very stable with accomodations and meds.  However, he said 98% chance getting off meds with surgery.  It is important we do it while she is this young because each time these headaches come on more "damage" is done and the surgery wouldn't be as successful in getting rid of pain symptoms.  As for other symptoms associated with Chiari, he talked about "spectrum" symptoms and the goal for this is to remove the headache pain. 

On to Olivia.  She is very complicated.  He is going to plan to do decompression with duraplasty because of the syrinxs.  Then he is going to remove part of her c1 called lanectomy.  However, before he would schedule surgery he is getting a 3d CT scan of her head and neck.  If the bones do not look right, he is worried about instability caused from the bone removal, so she would need to have fusion as well.  He is not worried about tethered cord because she has sacral dysgenesis type 2 which is a mostly truncated sacrum, where the filum terminale doesn't really form so there is nothing to tether.

So, I am praying so hard that she does not need fusion.  Dr. George did say that if she looks boarderline he is not going to fuse and if she needed it later, he would do a 2nd surgery.  He believes in least invasive methods. 

I couldn't believe how strong I was!  Seriously had many pictures in my mind of trying to hold it together.  Maybe the tiredness from lack of sleep had something to do with it?  But I felt like I was in the best place possible for this. 

Our CT will be done this week and it is a stat order with results due by 24hrs.  It is a 10 min test and it stinks that they have to sedate for it.  I think it is to keep her from moving during it. 

I'll post the results when I get them.

Changed our Minds on the Neurosurgeon

So, we loved the Dallas Neurosurgeon a lot.  However, the MRI testing and follow-up conversations with his office have caused us to re-evaluate our decisions.  So, we are actually going to use a Neurosurgeon in Austin TX Dr. George.  To us, he seems to have the best reputation and skill for handling such a hard thing as Chiari Malformation and Syringomyelia.  Dr. George is participating in studies for Chiari and he is also considered a Neurotube specialist. 

In reading about Chairi Malformation and Syringomyelia, we know it is often associated with other disorders such as:

Hydrocephalus
Spina Bifida
Syringomyelia
Hydromyelia
Tethered Cord Syndrome
Spinal Curvature such as Scoliosis
Various bone growth and hereditary genetic disorders

For me, right after Olivia our 4yr old was born, the pediatrician that was on call (not her normal one) pointed out that she had a hemangionma that is located in the small of her back at the very base of her spinal cord.  At the time it looked like a bright red birthmark about the size of a quarter.  It was extremely noticeable.  He said she appeared perfect except he was worried about her spinal cord being "tethered" because that is the place they do NOT want to see a birthmark. 

Olivia had an ultra-sound when she was about 6-8weeks old and they cleared her of any issues.  Now I know that an ultra-sound is not the test of choice for confirmation of a tethered spinal cord.  It should have been an MRI.  Some people still think the ultrasound would have been ok.  Hopefully there is more data about it now out there.

Olivia's CSF study revealed that her cerebellar tonsils are also touching the brainstem.  I have been reading about deformative stress.  I am pray this isn't the case with her, but her scans do look like retroflexed odontoid.  We will see what the NS says. 

Abrianna our 6yr old, her study stated it was abnormal and the impression was that it was normal.  The Neurologist said you cannot be abnormal and normal.  We still can't get clarification from Dallas Children's on this report.  I have found that when I question a radiology report, I do not get very far with it.

I think the important thing is to focus on April 11.  That is the day we will get all the information and schedule surgery for June.  Pray for us.  I'll post in a week or less about what the Neurosurgeon says.

Valentine's Day News....not so lovely turns into blessings

So, its Valentine's day.  The new office is open and everything is looking like it will be nice.  The weather is good and I'm "working" with my hubby.  All is going well until I get a frantic message from my realtor to call her right away on my house for sale.  I'm excited thinking "yay finally maybe we sold it!".  So, I called the realtor and she says "your house is flooded, I'm going there now, that is all I know".  Uh....what?  Yep.  Apparently, the upstairs instant hot water tank decided not to work anymore and a valve malfunctioned, causing a massive flood in the entire house.  Remember I just said UPSTAIRS tank? 

Here are some pics of what it looked like:

                                                     This was my laundry room

                                                 This was my laundry room ceiling

                                                     This is where the water collecting in the hallway ceiling

                                                            This was my hallway wall

                                                                different hall wall view

                                                               Over the bathtub it was a ceiling

                                                         different bathroom ceiling view

                                                              ceiling full of water

                                                         This is NOT texture.  IT's peeling paint.

                                                          Pretty huh?

                                                          No more wall behind the bathtub either

                                                            Only the heat air return vent lasted!

                                               Wall damage

                                                     Water heater leak. You can't even tell!

                                                Water heater hose fitting leaking.

                                                 The cold water side was fine.  The hot water broke.  Sheesh!

So, I hired a water restoration company and carpet company to clean up the house.  The carpet cleaning company was able to save the carpet but not the padding.  Apparently the water was STANDING 6 inches throughout the house.  The walls in the house sucked up the water like a "wick".  So, everything looked and sounded horrible. 

Enter the water restoration company!  OK I do not know how they do it, but they make your house look totally normal.  No mold, no messed up walls (except they remove the walls that are not saveable).  They drill holls every 5 inches or so along the bottom of the walls and then they use thermal imaging cameras, water detection equipment, dehumidifiers and fans.  They did this for about 9 days in the home. 

In the meantime, I contacted my insurance company.  This loss IS NOT COVERED.  Yep, I feel robbed but I'm still working on this, but man.  The house was vacant and I purchased vacant house insurance policy.  However, this isn't one of the perils that are covered.

I called the city utility department to see when the leak started.  They said they sent me a letter the night before because our usage seemed a little high.  They sent the letter after they sent TWO city workers to read the meter manually (which you have to go through the yard and at least drive over the soaking wet street).  So, apparently the water coming out of the house and running through the yard and down the street wasn't enough to tip them off to the problem.  This is because the work order said check the meter reading.  Not sure when it is important enough to shut off the water.  The city claims that they do not call homeowners when they suspect a leak.  However, other citizens there have told me that is not true and that the city called them after filling a pool.  The city advised only the homeowner can shut off their water. 

The realtor who was supposed to be checking on my home said she hadn't been in there in over 10 days.  The people that found it were a serious couple apparently taking a second look so that they could make an offer on the home.  That deal did not work out (obviously).

I have paid about $4,000 so far just to get it dry.  I am estimating the repairs to total about $15-20K total (including the drying). 

I am selling my new van to pay for the repairs.  :(  Very sad.

 However, I have through God's direction decided to allow a family that we have known for several years move into our home and buy it from us.  First off they have endured many trials in life.  They always lend a helping hand to people and even money.  Their own home has not survived well after several floods in their basement, a gas leak, a fire, a poor repair to the fire where the home was re-repaired, and an earthquake that has caused the home to sink in on itself.  So many problems with their home has left it in dis-repair.  They can't sleep in their bedrooms during cold nights because the living area is the only room to stay warm enough (60 degrees brrr).  Also, the home has some safety concerns and after living there and doing numerous repairs for 10 years, they just couldn't get ahead.  They have to walk away from their home and have been looking for a while for another home.  Since they are a family of 8, there are not many options for them.  They do not have good credit and could never qualify for a decent loan.  So, we are working out them moving in to our home, actually scratch that, their new home.  It is a fresh start for all of us. 

Ideally, in our heads we wanted to walk away from that area with a clean slate, however, this challenge is something hard to overcome.  This family has been to this house so many times, with our kids growing up together, that it is definitely going to be an easy transition for them.  They will have no repairs (new roof, new heat and air, new water tank, new walls, new flooring, etc.).  Literally, nothing to worry about for repairs (beyond an occasional toilet backup after kids clog it).  :)  I told my friend that I felt like she has blessed many people in her own way over the years, giving what she could, and I watch her trust God so much and sometimes, it seemed like he didn't come through for her.  Deep down, I feel like God wanted me to do this for them before now, however, I think we all had to be ready for this transition. 

So, we are working on getting our agreement in writing and making this work for our families.  God does turn evil into good.  Just wish he didn't have to use so many floods! :)

CSF Flow Study part 1

We spent President's Day getting our CSF Flow studies done at Dallas Children's Hospital.  The flow studies are actually "videos" and so I can only post pics of them.

Olivia's Brain report:

FINDINGS: (for the Brain)

The sagittal images shows the corpus callosum is normally formed.

The cerebellar tonsils extend 5 mm below the level of the foramen magnum. The CSF flow images show paucity of CSF flow along the dorsal aspect of the foramen magnum along with abnormal neural movement in 4 out of 30 phases of the cardiac cycle. The
dynamic images show downward and anterior movement of the cerebellar tonsils and brainstem. The ventral aspect of the brainstem abuts the dorsal aspect of the dens on the dynamic images.

The optic chiasm, optic tracts, and optic nerves are normal. There is a normal hyperintense neurohypophysis within the sella turcica.

Axial images show normal ventricular size and configuration. There are no pathologic extracerebral fluid collections. There is normal signal intensity in cerebrum, basal ganglia, thalamus, brain stem and cerebellum. There is no restricted diffusion.
There is age-appropriate myelination pattern. There is no cortical dysplasia.

Normal signal voids are seen within the intracranial vascular structures. The paranasal sinuses are clear. The mastoid air cells are clear. The orbital contents are normal.   

IMPRESSION:

Chiari I malformation with abnormal CSF flow dynamics.
Please refer to separate dictated report for details of the syrinx in the upper cervical spine.


Olivia's Spine Report:

FINDINGS: (spine)

Alignment: There is normal alignment of the spine. The vertebral body heights and intervertebral disc spaces are normal.

Marrow: Marrow signal is normal.

Cord: The conus terminates at L1 vertebral body level. There is normal appearance of the filum terminale. There is an expansile multiloculated syrinx within the cervicothoracic region extending from C4-C5 intervertebral disc space level inferiorly to
T2-T3 intervertebral disc space level. This measures 8mm in its maximum diameter. There is an expansile syrinx at T7 level as well as within the conus. There is also a filar cyst, just inferior to the conus.

The cerebellar tonsils are low lying. There is normal signal in the spinal cord.
Soft tissues: The prevertebral and paraspinous soft tissues are normal. The vertebral artery flow voids are patent. There is no hydronephrosis. 

IMPRESSION:
Multilevel expansile syrinx within the spinal cord. This appears stable, in comparison to outside MRI dated 9/13/2013.

So, basically, Olivia's CSF doesn't appear to being flowing right and her ondontoid is touching part of the brainstem.  A friend had me start studying "Deformative Stress".  It appears to be related to EDS somehow.  The other thing is that it appears the syrinx's in Olivia's spinal cord are "stable".  I would have preferred them to say "resolving".  Here is where I take a huge SIGH.

Here are some pics of Olivia's newest MRI.  The first picture shows how the ondontoid appears to be pushing in on the brainstem.  The second pic shows the area of concern circled in purple.

 

 

                                               This picture shows the "Filar Cyst"

                                                   This picture shows the syrinx in the thoracic area that is large (black spot in the lower part of the picture)

                                          This picture shows the other syrinxs that don't look any different. The Chiari is also very apparent. 

 

Now here is the report for Abrianna's Flow study:

 

FINDINGS:

The sagittal images shows the corpus callosum is normally formed.

The cerebellar tonsils extend 5 mm below the level of the foramen magnum. There is paucity of CSF flow along the dorsal aspect of the foramen magnum along with abnormal neural movement in 5 out of the 30 phases of the cardiac cycle. The dynamic images
show downward and anterior movement of the cerebellar tonsils along with minimal movement of the brainstem and no impingement on the subarachnoid spaces by the neural tissue is.

The optic chiasm, optic tracts, and optic nerves are normal. There is a normal hyperintense neurohypophysis within the sella turcica.

Axial images show normal ventricular size and configuration. There are no pathologic extracerebral fluid collections. There is normal signal intensity in cerebrum, basal ganglia, thalamus, brain stem and cerebellum. There is no restricted diffusion.
There is no cortical dysplasia. There is age-appropriate migration pattern.

Normal signal voids are seen within the intracranial vascular structures. The paranasal sinuses are clear. The mastoid air cells are clear. The orbital contents are normal.  

 

IMPRESSION:

Low lying cerebellar tonsils with normal CSF flow dynamics.

 

 

So, reading this report she has "abnormal" flow in at least 5 out of the 30 cycles, but they said she had normal flow.  They also diagnosed this as "low lying cerebellar tonsils" WITH "normal CSF flow dynamics."  So, I called the neurosurgeon's office and spoke with his assistant.  I advised that I do not know how you can have abnormal flow and tonsils beyond the measurement for chiari 1 and be "normal".  I sure hope she is, however, I don't know how Olivia's report gives her the same measurements, 1 less abnormal flow and gets her the Chiari diagnosis with abnormal flow.

 

I just simply feel that it is ridiculous that we pay for an MRI and can't even get a correct report.  So far with MRI's I have learned three things:

 

1.  CLEARLY understand how the anastesiologist will be knocking out your child and discuss prior successful anesthetic events.  For instance, in Oklahoma City and Dallas they use gas to start sedation so they can insert the child's IV without it being so tramatic. 

 

2.  Make sure they put your kid in STRAIGHT in the MRI so that you don't end up with a crazy rabbit trail worried that your child has scoliosis on top of your other worries.

 

3.  Ensure that you get your MRI disks IMMEDIATELY and take your laptop to ensure the images are readable right then and ask for at least 2 copies of the disks.  Also, call and get a copy of your MRI report a few days after your test.   More than likely, you will get the report LONG before your ordering doctor will realize they have one to read.

 

I'll repost a follow-up when we learn if Abri's report will be re-done.

 

 





 

Dallas, TX - finally found our NeuroSurgeon

Well, we have made the decision to go with Dr. Swift at Children's in Dallas, TX. 

Here is his bio:

Dale Swift, M.D.
Dr. Dale Swift was born in Lorain, Ohio. He attended the College of Wooster in Wooster, Ohio, where he graduated Phi Beta Kappa in 1980. He earned his M.D. at Case Western Reserve University School of Medicine in Cleveland and was invited to join Alpha Omega Alpha, the national honor medical society.

Dr. Swift completed his surgical internship and residency in neurological surgery at Columbia Presbyterian Hospital in New York City. He completed a fellowship in pediatric neurosurgery at Children's Hospital of Pittsburgh in 1992.

Since 1992, he has been an attending neurosurgeon at Children's Medical Center Dallas, Medical City Dallas Hospital and Texas Scottish Rite Hospital for Children. He is currently associate clinical professor of neurosurgery at The University of Texas Southwestern Medical School. Dr. Swift is certified by the American Board of Neurological Surgery and the American Board of Pediatric Neurological Surgery.

Dr. Swift's research interests include the pathophysiology of Chiari malformations, neuroendoscopy in children and arachnoid cysts. He participates frequently in international pediatric neurosurgical training, most recently in Bangalore, India, under the auspices of the International Society of Pediatric Neurosurgery.

Here is a publication that he was involved with:

 Suboccipital decompression during posterior cranial vault remodeling for selected cases of Chiari malformations associated with craniosynostosis.
Scott, W. W.,Fearon, J. A.,Swift, D. M.,Sacco, D. J. 

Here is the facebook site.  He is the doctor that is the 2nd one from the left with a big smile :)

 https://www.facebook.com/Neurosurgeonsforchildren

This is a tv episode where Dr. Swift is featured.  

 http://www.youtube.com/watch?v=R3myAl7xsJQ&feature=share 

 http://www.youtube.com/watch?v=NNrB_pwym34&feature=share

This features Dr. Swift and his family 

 http://www.youtube.com/watch?v=2wEfVPjWSUI&feature=share

So, anyways you get the idea.  There is a lot of info that we covered but the plan is:

New MRI's that measure the CSF flow called CINE that take place in Feb for both girls.  

Olivia will have surgery in March 2014.  She will have decompression, a dura patch and something done to her C1 spine, which I'll post more about as I understand that more.  She is also probably going to get cauterization of the cerebellar tonsils to shrink them back up.  

For now, I'm trying to cope and get through the nights.  Days are good.  Begin alone or trying to sleep without worry is almost impossible.  I just pray a lot.  

Hugs for all my fans that are going through this and who pray for us :)

 






  

Cerebellar Tonsillar Ectopia

So just found out another kid has Chiari.  Well, actually they labeled it Cerebellar Tonsillar Ectopia.  I have read it is because it doesn't meet the measurment guidlines for true Chiari.  But, I think that looking at the images

That it looks like anything BUT Chiari!  I mean it has a classic shape.  So, I am just going to be praying that this is going to remain stable.

Why did we get her MRI done? Well, honestly because for years we have known something wasn't "right".  The fine motor issues are getting better, but at 12 you should be able to open packages and door knobs!  Things like handwriting in school, super slow.  Gross motor issues have now got a new name of hypotonia.  So, yea, I think the Chiari has affected her over time for sure.  This is more proof to me that the size of the herniation doesn't matter.  My 4yr old's herniation isn't that bad at all, yet she has significant (actually the docs call it "compelling") syringomyelia. 

The plan for now?  Physical therapy to increase muscle strength, and working out at the gym.  Weight gain is a concern with the limited activity that goes on due to being tired easily. 

The goal is to live a great life, a healthy life, and a full of God life.  :)

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.

New York - Party in Slow Motion part 2

Well, it has been a long week.  Lots of good stuff and a few rough family moments.

We had finally made it to New Jersey and ate at Applebee's there (I have to eat gluten free so I usually pick restaurants I'm familiar with).  (That's my beautiful Mama!)



We were going to try to go by the Cake Boss bakery, but somehow took a wrong turn and ended up in the middle of Manhattan in China Town!  So, imagine a big white hi-top conversion van driving down the road there!  Honestly, there was so many people everywhere and cars, I do not know how people live and work in busy parts of New York without being stressed out.  How can you get anywhere and on time?  As an Okie, this was so stressful.  Somehow though we did get through the crowd and understand that we did something wrong.

We did make it to our hotel, exhausted and grumpy (Note:  never tell your Honey that he's going too fast for you to figure out where your at and then realize you have turned the map upside down.)  If I had been driving it would have looked like this http://movieclips.com/6omE-clueless-movie-freeway-freakout/  (PG warning).

We checked into our room which was a two bedroom two bathroom suite.  It's been pretty perfect for our week long stay here.  Also, we have a great laundry and really perfect indoor heated pool that has been to ourselves with no one swimming here.

Jones Beach was a really fun experience.  The only thing that could have made it better was taking a picnic basket (yes Mama I should have listened to you).  There was basically no one at the beach on this beautiful 68 degree day with no wind really.  Lots of sea shells and sand.  Kids had a blast.  There was even a little beach shop open which worked out because they all had to literally test the waters and Sarah ended up getting her shoes soaked and covered with sand.  So...flip flops is what we bought there and a bag to put the shoes in :)


We also found a McDonald's that was really cool.  A big white Victorian house


We went to get the MRI's done at the hospital and they went well.  We had some confusion on how to do the flex MRI's under anaesthesia since they don't want to have the head fall forward to block the airway.  So both girls had to go into the MRI at first without meds.  They did perfect!  So proud.  Fortunately, they could still see daddy (he goes in testing I stay out with the other one in recovery) and didn't have to anestasized until the head went backwards and they couldn't see him anymore.  Here they are in recovery



The rest of that day was spent chillaxing in the hotel.

There was a day between the MRI and the doctor visit so we told the girls we would find something to do around town.  The daunting task of pleasing the multiple ages of the kids and my Mama (she just wanted to go by Times Square and the Statue of Liberty) and ourselves, proved to almost overtake us as I got frustrated ended up in the backseat of the van to let my Mama navigate.  So, hubby decides to drive around some more and we ended up in a not so fun area.  So, we turned around and went back to a better area.  Just when I thought the day was hopelessly lost, suddenly, there it was  .  Yes for all my organizational fans out there, The Container Store!  So, hubby says "wow who knew that was a turn-on for you"?

The sheer excitement of the family behind me (oh no not there mom!  Really a box store?  How many boxes do you need?  (thanks Mama for being the adult in the situation) was drowned out by heavenly angels from above singing as I raced into the store and saw the "Bright Shiny & New" display .  Ok so for all those wondering who have never been in there and wondered if it is worth it...it so is.  However, plan to have everything delivered!  I loved being able to actually put my hands on stuff I was interested in that I've seen online. And the Elfa stuff...it is pretty amazing.  All of their products they carried felt high quality.

In the end the family had settled on that "it was a pretty neat place mom" (Thanks guys).  They actually had a good time..but who wouldn't?  Areas of your life that you can control in a box?  How isn't that a turn on?  :)

So that evening we ended up going out to eat (we had been eating breakfast and dinner at the hotel as it is provided in the room package) but we wanted to experience some NY food.  We went to Angelleto's and I got Chicken Marsala.  Others ordered the Manacotti and seafood pasta.  We also ordered a large pizza (I couldn't eat it but man it looked so good!).



Now I have to give props to Mama.  While it seems like she is just along for the ride and free food in the pics, she has been invaluable to me.  I just couldn't have done this emotional trip without her and I am so grateful that she came along to help me.  She has been able to pitch in to give me a much needed break.  She has sat in the back of the van helping to assist every whim (it's like the kids think there is a stewardess button in the van they just push "ding I need this"  "ding so and so did that".)  So thanks to my Mama, for whom without, this party just wouldn't have been as much fun! :)