Saturday, September 17, 2011

MRI News

Braden has Neurofibromatosis type 1.  His first MRI scan was in 2009 and the findings of that, were very typical of someone with NF: bright spots (UBO's), abnormal ventricles and "areas to watch")

We really didn't concern ourselves too much and did as we were told..."Watch and Wait and scan in a year."

So in December 2010, we went in for our "yearly MRI" and when the phone rang, before we even got home from the MRI, I knew something was wrong.

The MRI tech was confused when he compared the last scan to the one just taken...and asked me to come back in to re-scan him.

We had JUST gotten home, from a LONG....Sedated MRI, I was not about to turn around and bring my son in, to be re-sedated, and re-scanned.

Turned out, that Braden had a brand new Optic Glioma, on his left optic nerve, and several pelixform neurofibromas growing throughout his spinal cord.

It is VERY unusual for someone with Neurofibromatosis, to have new findings of an Optic Nerve Tumor, after they turn 8 years old....In fact, MOST doctors won't even scan an NF1 child, if they have had a previous "normal" scan, and have no obvious signs of issues.

But there it was.

A race to the Neuro-Ophthalmologist, for a complete vision screening was scheduled, as well as a meeting with the NeuroOncology team at the Children's Hospital.

After the vision screening came out "normal"...The meeting with the doctors, went as I expected..."Let's keep an eye on things...and scan Braden in 6 months."

So, we did as we were told...And Tuesday Braden had his 6 month follow-up MRI

Braden spent 3 1/2 hours in the tube as his brain and spinal cord were scanned.  The results showed growth of both the Optic Glioma and plexiforms...But as most of you with Neurofibromatosis knows....This does not necessarily mean anything.

As the doctors examined Braden and xrays were taken, it was also noted that Braden's scoliosis has gotten worse.

Physical therapy will be started in October, to help with strength and flexibly.

It's easy to become overwhelmed with all that is happening with our family, and this is why I stay very 'in the moment'.  I enjoy the small things in life, and try (sometimes fail) at letting go of the things that the things I cannot control.

1 comment:

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