May 17!

That’s the day.  Of course, I would like for it to be tomorrow so that we can be done, but this is the earliest we could schedule.  The doctor called me yesterday (to save me a trip to clinic…how nice?).  He explained in great detail (indulging the science-mommy) how he would release the filum.  He assured me that the girl would be able to wear a bikini one day because he had studied with a plastic surgeon.  I didn’t tell him that I thought that the girl’s daddy would have more of a say in that decision than a little scar!  Bikinis aside, the horizontal type of incision that the surgeon will use heals better than the vertical incision.  That’s always good!  After our discussion, I feel even more confident in this surgeon and that God led us to him.

The surgery will be at Children’s (too bad the new hospital isn’t open yet), and the girl will be in the hospital for 3-4 days.  When we get home, we will spend 2 weeks as a couch potato.  She can get up 5 times a day for 30 minutes.  The girl has such a high pain tolerance, that I imagine keeping her still will be the hardest part.  I guess we will read every book in the library, and watch a lot of PBS! After all of the rest, we can work on getting strong again at PT!

Now we wait.  We are going to try to do as many fun things as we can over the next two weeks.  We will visit our Nana and our friends in Indiana and run around, ride a tractor, and pet the sheep.  The girl’s Nonnie is coming, and we will find all kinds of trouble with her.  We will have as many play dates with our friends as possible, and for sure we will plant flowers with Aunt J.  We will also practice the cello and keep working on our goal of learning “Monkey Song”.

I will post more later about the procedure – for those who would like to know the details.

When the spinal cord is not free to move in the spinal canal, tension on the cord can damage nerves that may result in loss of bladder control, problems with walking, sensory changes, and orthopedic problems including foot deformities and scoliosis (Hertzler et al.  2010, Liu et al. 2011).  There are multiple causes of tethered cord syndrome (TCS), and the symptoms are varied and involve multiple systems (Hertzler et al. 2010, Liu et al. 2011).  Sometimes TCS is recognized by the presence of external signs including lesions, hairy patches, deep dimples or fatty tumors; however, it’s not always identified until a child is older and starts to exhibit problems with bladder control, walking or other neurosensory issues during growth spurts (Hertzler et al. 2010, NINDS).

TCS is diagnosed via MRI and evaluation of symptoms.  The position of the conus medullaris below the L1 vertebrae, presence of a fatty tumor (fibrolipoma), and thickness of the filum terminale are associated with a tethered cord.  It is not always possible to see the actual tethering via the MRI (my understanding).  In addition to an MRI, urodynamic studies can be helpful in making a diagnosis.  A Cystometry (CMG) study evaluates the capacity of the bladder and how well the sensory input is working.  The nerves at the base of the spinal cord innervate the bladder, so when there is a lot of tension in the cord, problems with continence can develop.  TCS can be treated via surgery (de-tethering), and the prognosis is good!

http://www.emedicinehealth.com/cauda_equina_syndrome/page15_em.htm

Sources:

Hertzler et al. 2010.  Tethered cord syndrome: a review of the literature from embryology to adult presentation.  Neurosurg Focus 29(1):E1.

Life Tech International.  2011.  Clinical application notes: Introduction to Urodynamics III: Urodynamic procedures, CMG.  http://www.life-tech.com/uro/urolib/cystometry.shtml  accessed 24 April 2012.

Liu et al. 2011.  SEM tudy on filum terminale with tethered cord syndrome.  Childs Nerv Syst 27:2141-2144.

NINDS. 2011.  NINDS tethered spinal cord syndromw information page.  http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm  accessed 24 April 2012.