Eye Issues with Neurofibromatosis

One of the most common signs of Neurofibromatosis is Lisch Nodules.  These are harmless/benign "elevations" of the color parts of the eyes (the Iris) and a key diagnosis factor in people with NF.  Basically, we have been told that Lisch Nodules are "birthmarks", that have no affects on vision and require no treatment.

Our NF doctors are awesome, don't get me wrong...And were telling us, that it is "highly unlikely" for a child to develop Optic Nerve tumors after the age of 8....And that MRI scans would no longer be necessary...UNLESS, something showed up in the eye exams....

Braden has had yearly eye checks, even before his NF1 diagnosis in 2007.  We were doing exactly what we needed to do, and Braden, to this day, still sees 20/20.

However, during our routine - yearly eye visit 2 yrs ago, the doctor notice "inflammation" in Braden's left optic nerve....

This alerted our Neuro-Oncologist, sending Braden in for an MRI.

It had been about a year since his last MRI (which came back with results as your typical "NF Brain") Click HERE for more on "NF Brain"

I wasn't really sure what I was expecting...We were dealing with Bailey's chemo and I just assumed that the findings were going to be no-big-deal.....But, when I got a call from the doctor before we got home from our drive from the hospital...I knew SOMETHING was wrong.

"But...You told me we didn't have to worry....You told me......"

I was side-swiped

At 14 yrs old....After 2 "normal" MRI's...Braden was diagnosed with an Optic Glioma.  Treatment would depend on his visual exams....Which, thankfully continue to be normal.

BUT...

It's THESE exams, that come every 3 months, that went on to diagnose a NEW problem.

After dilating....Our AWESOME doctor noticed issues with Braden's right eye.  I knew something was going on, after the doctor took an extra long time looking into Braden's eye....leaving the room, and coming back with TWO other doctors.  Specialists.

LOTS OF PICTURES.  ULTRASOUNDS.  VISUAL FIELD TESTS. 

MORE DILATION.    MORE DOCTORS

One doctor quickly rattled off some really long diagnosis, and left me sitting there.  WAIT.  WHAT?

SLOW DOWN!

Braden's right eye has something called a "Combined Harmatoma of the Retina and the Retinal Pigment Epithelium".....

I know right...?  What is this in ENGLISH!?

Basically a tumor that is too far back to be an optic glioma....and too small and in an area that MRI's can't pick it up...But can greatly affect vision, especially peripheral vision.

Eye issues are very common with NF...And with routine exams, most issues just have to be monitored.  The "wait and see" is just the way it goes with NF...Frustrating?  Absolutely.  But as I look into my sons eyes...I see a boy full of future...Full of Love....Full of Spirit...And full of Vision.

Thrive On!