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.