Wednesday, March 2, 2011

Ring*Ring* Ring

It's really frustrating talking to people doctors, who do not understand Neurofibromatosis.   It's even worse, when the doctor admits, that they know "nothing" about the disorder and couldn't really explain the complicated results from the MRI tech.

Don't bother calling me, just  to tell me you are under-educated!  Don't bother trying to explain something you don't understand...and please....PLEASE go take a class, or open up a book and learn about this common genetic disorder, that 1 in every 3,000 people live with!

When the phone rings...It's sad, that I automatically assume it's someone calling with bad news.  Bill collectors, someone sick at school, or doctors calling with results from a test.  When  when the caller ID displays "private number",  My gut wrenches.  I hate hate hate talking to doctors over the phone.  Times like this...I wish I had a personal secretary that could take the message.

Bailey's pediatrician is a good doctor.  She is thorough and seems to genuinely care about the issues our family is facing....But she does NOT get an 'A' for tact.  Blurting out, "the tumor has changed and she has 'something else' going on with the corpus calorpum part of her brain."  Unable to explain further, she stumbled through notes left and apologized for not understanding what it meant.

Now I am left waiting for the actual Neuro-Oncology visit a week from now.  I googled the information I did get, only to find myself in an overwhelming web of confusion and worry.  I know better than this!!!!  I just want answers.  CLEAR answers.  Then I want a course of action.  That's not too much to ask, is it?

Unfortunately, for people living with IS too much to ask.  Far too little is know about NF, much less understood...and the course of often, to "watch and wait."  Wait for what?  For things to get worse?

So, next week....we will hopefully get a more clearer understanding of the tumor changes and the new findings in Bailey's brain.  She will have a hearing test, to confirm the loss of hearing in her right ear, and then we will see what is next.

Chemo?  Surgery?  We don't know yet.  All we can do is to remember that whatever will be, will be...and take comfort in knowing that the Lord is with us every step of the way.

Thrive On


  1. I am so sorry about your frustrations! I can honestly say that you are not alone. I think it must be this way for all special needs. Perhaps the only way to solve it is to find a ped. that has more experience with your child's need. Nearly Impossible, eh? Unfortunately, we left a pediatrician who had experience with FASD when we moved. Sadly, I have found that even doctors in the FASD clinic don't know what they're talking about. Seriously, I think patients are the only experts! LOL.