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.

Rachel's MRI was today ... waiting for results ...

We got a call yesterday informing us that there was a cancellation for today; so Rachel was able to get her MRI done this morning.

Now we are waiting for the neurosurgeon to read the MRI to see if her spinal cord has re-tethered.

Good news from Lydia's MRI ...

Lydia's neurosurgeon reviewed her MRI from last Friday and determined that, in addition to enlarged ventricles (which we already knew about from the CT scan), she has a mild Chiari malformation (which is common for children with spina bifida) and her spinal cord is NOT tethered.  He said that there is still significant risk that her spinal cord could become tethered in the future, so she will need periodic checkups (semiannual or annual).

This all means that she will not need any surgeries anytime soon!

Medical update ...

Lydia's MRI was scheduled for the end of August, but she was placed on a wait-list in the event of a cancellation.  We got a call last Thursday evening telling us there was a cancellation for Friday morning and asking if we could have her there by 8:15 a.m.  We were able to make that work, so Lydia's MRI is completed.  Now we are waiting for her neurosurgeon to read the MRI to determine whether or not she has a tethered spinal cord or any other issues related to her spina bifida.

Regarding Rachel's scoliosis, because skeletal back surgery (or lack thereof) at such a young age can have profound future implications, and because every scoliosis case is unique, we would like to have another pediatric orthopedic specialist review her case before we decide for sure what to do.  We are strongly leaning toward the surgery that her primary ortho doctor recommended (removing a hemivertebra and fusing two vertebrae), but it's a bit scarey to think about her having rods and screws or what-not attached to her spine at such a young age.  So we want to gather as much info as we can before proceeding.  We are currently trying to get her in to see a specialist at Texas Scottish Rite Hospital for Children.  They are exclusively a pediatric orthopedic hospital in Dallas.

Also, Rachel's neurosurgeon is concerned that her increased spinal curvature could be an indication that her spinal cord has retethered.  As such, he has ordered an MRI so we can be certain.  We are awaiting the scheduled date for that, but are hoping that she will be able to get in early via a cancellation.

Disappointing report from Rachel's orthopedic surgeon ...

Rachel saw the pediatric orthopedic surgeon today.  The curvature in her back has increased from 43-degrees to 53-degrees in the past six months.  As a result, he is recommending surgery.  He would prefer to hold off on surgery until she has grown more; however, given the fact that her scoliosis is congenital, he is concerned that the curvature will just continue to worsen as she grows.  If we do wait, she will need external bracing in the meantime to try to physically restrain the curvature from worsening.

Please pray for wisdom as we determine what to do next.

Good initial report for Lydia from the neurosurgeon ...

First, we need to rewind a couple weeks.  On June 7, Lydia fell off some playground equipment, hitting the back of her head on a metal bar on the way down.  She immediately developed a large bump on the back of her head.  As a precaution, Sarah took her to the emergency room.

The ER doctor ordered a CT scan to make sure there was no damage from the impact/fall.  The CT scan confirmed that there was no damage.  The radiologist that read the CT did say that she has "mild hydrocephalus".

On June 16, Lydia had her first visit with the neurosurgeon (Dr. Mapstone).  He read the CT scan and said that Lydia has "enlarged ventricles" (Dr. Mapstone reserves the diagnosis of "hydrocephalus" for conditions that actually require treatment via a shunt).  At this point, there is no evidence to suggest that she needs a shunt.  He was very pleased with all that he observed, even to the point of questioning whether she ever had a myelomeningocele (the diagnosis included in her medical report from China).  He said we really cannot tell anything for certain without an MRI (he ordered a complete MRI--we are on waiting list to hopefully get that done within the next month or two).

Lydia seems to be adjusting well ...

Lydia has adjusted well to her new surroundings and her new family.  She seems happy most of the time and has been sleeping well.

Sarah has only had one decent night's sleep since we've been home, though.