So, our WAW is turning in to a bit more proactive.  Our pediatrician called last Monday and let us know the results of the MRI.  I should say our pediatrician called at 6:30 Monday night.  As soon as she received the MRI results.  We had looked at the scans beforehand and I had sent an email to Dr. B to let her know we were very interested in receiving the results as soon as possible.  She willingly obliged.  She not only went over the report but also calmed some fears and discuss some things to watch for.  We are blessed.  Beyond blessed to have a pediatrician who knows her stuff and knows NF!

Dr. W called later in the week  after we pestered him and he pretty much confirmed what Dr. B said.  He also confirmed that we are moving from an “if” she has surgery to a “when” she has surgery.  He was waiting to get information from Dr. C, her neurosurgeon before contacting us.  And, in true amazing Emmie fashion, she “won” a spot in joint conference, where all the neuro people discuss the more diffficult cases.  Go Emmie.

Here’s the results:

While the plexiform neurofibroma (benign tumor) that is on her neck is growing and pushing on things it is not causing any problems as of right now.  That is good news but is going to require closer monitoring.  We have been armed with what to look for if it starts causing issues and ya’ll know my mama hawk eyes are on it.

The main area of concern right now is the cervical kyphosis.  Kyphosis is an abnormal bend in the spinal cord (ya’ll know this is the non-medical me talking here right?).  In Emmie’s case, the spine is curving in the neck area.  It was noted on her MRI in September and we were told then that it was a WAW situation.  It could have been because of the way they positioned her in the MRI.  This time, however, it was a lot worse and very clear that it is not a positioning issue.  Her spine is now curving into a “C” shape with the opening being at the front of the neck.  Googling a normal spine MRI and you will see that is no where near what it actually is supposed to look like.  They don’t believe that this is directly related to the plexiform neurofibroma but it could be an indirect issue or just another one of those lovely NF symptoms.

Here’s a great article on orthopedic issues in NF1 patients.  Kyphosis is mentioned and treatment therapies are mentioned.  My social work nerdy self found it all very informative.

Surgery to correct the kyphosis will be in Emmie’s future, unless the Lord decides to heal her of it completely first.  However, the doctors want her to be as strong and as old as possible to ensure the greatest amount of success.  While, we all know that bracing will not cure the issue or completely correct it, they want to try it first to try and delay surgery.  So, at some point, Emmie will be sporting the latest in headgear fashion of some sort.  We don’t know how long in a day she’ll have to wear it or how long in months she’ll wear it.  Not sure what it will affect in her development or in her current muscle strength.  A lot of questions that will be answered at upcoming appointments.

We had hoped that we could go at least six month between MRIs but the plexiform growing and the kyphosis earned  her a three month vacation before the next one.  This will be MRI #4 in under a year.  I hate this part.

But this goofy girl just has my heart!