Tuesday, June 26, 2012

NF Brain

I have heard it before...MANY times actually, "Your child has a very typical NF Brain."  The first time I heard this, I actually felt offended. This was mostly because I had no idea what this statement meant...AND I had doctors in my life, that failed miserable at explaining it.

In short "NF Brain" means the findings in the MRI were "normal" for those living with Neurofibromatosis.  Normal is the word you need to focus on.

People with NF have all kinds of "normal"  things that can appear in the brain...

* “Unidentified bright objects” (UBOs)  Have been noted in 93% of children and adults with NF1
Basically these have been explained to me as being "birth marks" in the brain.  They are                      harmless and do not need special care or monitoring.  
Some of the UBO's noted in previous MRI's for my children with NF1 have actually "disappeared".

*OPTIC PATHWAY "abnormalities"  This is NOT to be confused with Optic Pathway Tumors (which affect about 20% of children with NF1)   Out of my 3 children who have NF1, One has an Optic Glioma....The other 2 have other issues.  

Braden's Optic Glioma was diagnosed when he was 13 yrs old.  This tumor, does not affect his vision and is being monitored.

Rachel's "NF Brain" showed Optic Pathway narrowing and DOES seem to affect her vision.  The Drs call Rachel's issue as "hypoplasia"....Which is basically an underdevelopment of the pathways.  Drs. tell me this is a "normal NF Brain" finding.

And..."abnormalities" does NOT necessarily mean something is WRONG....Abnormal just means that compared to someone WITHOUT NF, the finding was...different.

*Gliomas  The most common are gliomas in different portions of the brain, including the brain stem, and the cerebral cortex (the area of the brain in charge of language and information processing).   The treatment depends on the location of the tumor, how fast it is growing, and what symptoms it is causing. In MOST cases, observation alone is the appropriate first treatment. In other cases, removing the tumor through surgery.

I personally am living with a Glioma, requiring monitoring, but no treatment.

*Enlarged Ventricles  / Underdeveloped ventricles  I have enlarged ventricles, which I was told by 3 Neurosurgeons was VERY TYPICAL for people with NF1.  

Rachel, who is 9yrs old has underdeveloped ventricles.

All of these "normal" findings lead up to A LOT of complications for those living with Neurofibromatosis....The most common are:

Neurological problems. Learning difficulties occur in up to 60 percent of NF1 cases and are the most common neurological problem associated with NF1. Uncommon neurological complications associated with NF1 include epilepsy, stroke and buildup of excess fluid in the brain (hydrocephalus).

Visual difficulties. Occasionally in children, the optic pathway tumors cause vision loss.

 Always ALWAYS ask questions about the MRI findings.  There is no question that is too "stupid" to ask.  If the Dr. is using a bunch of medical terms that you do not understand...ASK HIM to slow down and to explain the findings in a way you CAN understand.

All too often Drs get away with spewing off a bunch of medical gibberish -- leaving the patient not only feeling overwhelmed, but also very confused.  It is very important that you leave your appointment feeling confident that you understand your results.

"Normal"  "Abnormal"...It's all relative, isn't it?



  1. All too often we leave the drs office feeling so overwhelmed and very confused. Your blog has helped me so much in how I deal with drs. I am now not afraid to ask questions and make the drs spend a little more time explaining stuff.
    Thank you very much for your attitude and information!

  2. I noticed you mentioned optic nerve tumors well at the NF beach day last week here in southern California I met a girl with one. It was treated by chemotherapy and I was thinking oh crap she has leukaemia. Some forms of leukaemia are common in NF but just a optic glioma. This girl 7-9 years old had lost a lot of hair and I was going to ask here parents if I could get tested as a bone marrow match.

    1. I was at the beach day as well and the same thing occurred to me. My daughter has an optic glioma, so I'm always wondering.

  3. Thanks so much for your insight. As a Rn and a mom of a 12yr old daughter with NF, " the normalcy" is what I focus on daily. I always analyze and obtain reports, and I totally panicked when I read hers. Thanks Again for sharing!

  4. i have nf1 and my 2 boys have optic nerve tumors one has it on his left and the other has it on both side's he is going through chemo therapy not working well atm and my other might have to go through it soon to its hard not to think about it all the time and talk about it cause its upsetting

  5. Interesting I was told I had Dandy Walker because Enlarged 4th Ventricles ,Now I read that Enlarged and Underdeveloped ventricles are VERY TYPICAL for people with NF1. Great to know but when will the doctors know this.Kansas doctors are truly Dumb,Oh this was in Kansas City at KU med I was told this.Then the doctor said I have probably been retarded my whole life I just never knew.I never went back,He said everyone with NF is retarded.

    1. Your doctor is horrible. Saying that everyone with NF is retarded...That's not a doctor...That's a monster!