11/2/09 Neuro appointment

Sorry it's taken so long to update but life gets in the way sometimes.

We met with Dr. Bajwa on Monday to go over the MRI cervical spine results.  The actual situation is worse than we thought.  Her 13mm malformation itself is pressing on the spinal cord and restricting the fluid flow to and from her brain.  In addition to this, the tip of the spine itself is curved and is also pressing on the cord.  So basically the cord is pinched in between the curvature of the tip of the spine and the malformation creating NO flow in the one cavity and restricted flow in the other.  Clear as mud eh?

So here's the situation. Surgery is recommended. Apparently there are 2 types of surgeries that could be done.  The first is where they would remove a piece of her skull from the back of her head to allow the brain to move out of the cavity and relieve some of the pressure.  The curve on the spine would remain and still restrict some flow but the removal of the skull would help ease it.  This surgery is the lesser of the 2 evils.  It would take approximately 2 hours, she would be in the hospital about 4 days and out of school for about a month.  The 2nd type would require them to go in through the front of her neck to get to the spine itself and basically shave the bone to get rid of the curve. This would alleviate all of the pressure because they would also remove a piece of skull but as Dr. Bajwa put it, this surgery is too "fancy" for her and he will not do it. This one would take approximately 6-7 hours in surgery, a 2 week hospital stay, she would have to wear a halo and would be out of school most of the school year.

What does it all mean?  It means we have a lot to digest. A lot to think about. We could opt for no surgery and just keep monitoring the malformation with MRI's every 3 months but her symptoms would remain or worsen and at some point in her life she would need the surgery anyway.  Seems smart to do it now while she is still yound and resilient.  But who wants their child to have to have brain surgery?

We have contacted the Chiari Institute on Long Island http://www.chiariinstitute.com/ to set up an appointment for a second opinion.  Dr. Bajwa HIGHLY recommended we go through all the motions to make a sound decision for Kendall.  We won't know for a few weeks if and when her appointment is with them.  Hopefully after our visit we will be more educated and be able to make the best decision for Kendall.

She knows she may be having surgery on her brain.  She is scared but the funny thing is she hasn't even asked why? or What is wrong with me? She is more focused on if the hospital will have good food and if mommy will be there with her.  I'm telling you this kid is phenomenal.

***sigh***  I don't remember the mommy handbook saying I would have to make life altering decisions for my child.