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.