Who Takes Care of Mommy?

I just got off the phone with MY Neurologist.  Yes...I do have a Neurologist...And I have been avoiding him for almost 2 yrs.  (At least that's what the scheduler said when I made my appnt)

It doesn't feel that long...In fact, I have totally forgotten the fact that he said he needed me back in a year, for a follow up MRI.

MY BAD.

Like an overgrown garden, filled with weeds...Life sometimes gets overwhelming.  Just the thought of going outside to start the "weeding process"....makes me feel like I am on an endless spin of a merry-go-round.

JUST LET ME HAVE ONE DAY....ONE WEEK....ONE MONTH

Where I don't have to think about NF, DR Appnts, headaches, tumor pain, tumor growth etc etc etc

(And this is just my kids....And Oh Yeah....I have NF too.)

My husband said to me yesterday...."My mom didn't realize you had a brain tumor."

(She's here from Washington, for a visit)

REALLY?  I've been married to Rich for 14 yrs....I've talked endlessly about NF and ALLLL the issues it has caused....Did I really never mention this?  

I rarely post updates about myself....Mostly because, I feel "fine" and my NF has stayed fairly quiet

***Knocks on Wood***

But I do in fact have a brain tumor.

I also have non-treatable Normal Pressure Hydrocephalus.

I have blogged about this, but the posts are WAY back, and have probably been forgotten about.

When my husband told me that his mom had "no idea" I had a brain tumor...It sent mixed feelings.  

1. I am GLAD that I am not one who mentions her every ailment in every conversation I have.

2.  I guess I hadn't fully explained our "situation" in a way that was understood

3.  I guess I don't "act" like a person with a brain tumor and hydrocephalus

So there it is.   Time to take care of Mommy.  

Time to be more open, more honest and get out there and pull some weeds!

After all...Even the most beautiful of gardens don't get that way on their own.

THRIVE ON!

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?

THRIVE ON!