Update on Rachel: Probably no surgery needed this year!

A lot has happened since our last update:

• Rachel's MRI came back negative for tethered spinal cord (meaning that her spinal cord has NOT retethered; so she does not need another detethering surgery).  She and Lydia will always be at risk of developing a tethered spinal cord, so they will need periodic check-ups in this area, probably every 18 months or so.
• We had mixed feelings about the MRI results.  Although we were happy that she doesn't need to have detethering surgery, her pediatric ortho surgeon had said in June that she will needed skeletal spine surgery very soon, because of a sudden increase in the curvature of her spine (10 degree increase in 6 months, from January to June).  If the increase in curvature ended up being due to a retethered spinal cord, then presumably a detethering operation would stop the curvature from increasing.
• We began trying to get Rachel in to see one of the scoliosis specialists at Texas Scottish Rite Hospital for Children in Dallas.  (This was by no means a sure thing because TSRHC typically only sees patients who are Texas residents).  In any event, because skeletal spine surgery can have profound future implications (especially for a 4-year-old), we wanted to get a second opinion before deciding for sure what to do, and TSRHC has done some pioneering work in the field of scoliosis treatment (and they are relatively close by).
• We received notice a few weeks ago that Rachel was accepted into the spina bifida / scoliosis clinic at TSRHC.  However, the next available clinic date was not until October 20.  Our impression from the ortho surgeon in OKC was that she would need either surgery or bracing within a couple months (and that assessment was made in June).
• We called TSRHC to see if we could be placed on a waiting list in case there ended up being a cancellation.  One of the patient access representatives agreed last week to start checking daily for cancellations to help us get in sooner.
• We found out Wednesday (8/12) late afternoon that there was a cancellation for Thursday afternoon.
• So, Rachel and Steve left for Dallas Thursday morning and met with one of their scoliosis physicians Thursday afternoon.
• Based on his observations of her and his evaluation of her x-rays and MRI and CT imaging, he was not convinced that her curvature has truly increased 10 degrees in the last 6 months.  He said there can be as much as 7 degrees of measurement error between x-ray images.
• He said that even at 54 degrees, he would classify her curvature as moderate, not severe, and that he only recommends surgery for 4-year-olds if the curvature is severe.  He said he would consider 75 to 90 degrees as severe.  This means that even if she does increase 10 degrees every 6 months, it would be a year or more before she would move into the "severe" category.
• They took some baseline x-rays.  The doctor wants to see Rachel again in 6 months to get new comparative x-rays to better asses what curvature changes are occurring.
• His basic premise is that doing surgery now will limit future growth in that portion of her spine; as such, it is better to postpone surgery for as long as possible.