Saturday, July 28, 2012

To Cut or Not to Cut?

We will soon be faced with a decision.  

For the last 2 years we have held off on the decision to cut the acoustic nerve tumor that rests on the right side of Bailey's brain.  (this was NOT just based on OUR choice, but a recommendation from Bailey's neurosurgeon who felt leaving the tumor, would be better than cutting it out)

However, over the last 2 yrs, even though this tumor has remained "stable"...Bailey's symptoms have not.

The dizziness that Bailey faces every single day has impacted her life so much, that surgery may now be the best option.  But this does not come without serious repercussions.

We have been told, based on the location of this tumor, that surgery would leave Bailey completely deaf on her right side.  Facial paralysis is likely....And, surgery would not guarantee that Bailey's dizziness would go away.

So what do we do?  Take a risk and HOPE that Bailey's symptoms would at least get better?

I'm scared.  This is brain surgery!  

There are some days when I just throw up my hands.  And that's when I actually feel the relief.  
*Will I ever learn?* 

I know that God is in control -- But it's ME that has to make this decision!  And it's Bailey that has to live with the outcome of this decision!

August 10th...Bailey will have an MRI and we will meet with our oncology team and the Neurosurgeon and try to come up with the best plan....

And for now, my hands will remain in the air, and we will just continue to live in the NOW! :)

Thrive On!


  1. So I have a HUGE question and I hope I remember to come back to read the answer (e-mail me?).

    How is Bailey's dizziness? Is it positional or is it all the time or no rhyme and reason? I ask because I have positional vertigo. I'm working with the doctor on taking a few small steps to correct this problem.

    I really do not think it's NF related because of the way that it came on. (Long story but if you're interested I'll explain in an e-mail)

    1. Bailey is dizzy ALL THE TIME. Laying down, sitting up, walking, standing etc... It gets worse when she moves around or changes positions fast.

      I have heard from MANY NFers, about feeling dizzy and that they get NO WHERE with doctors...(Myself included)

      I have been to ear nose and throat DRS, neurologists, and spine drs....NONE found the true cause of the dizziness.

      Its a horrible feeling...when there are no answers to your problems. That's just life with NF, I guess.

      Id love to hear your story

    2. I too have a question. My son who is almost three has NF1. He also had infantile spasms but that now is under control. My question is, he is always laying down, as if he is lethargic. But he is non verbal so he cannot really tell us whats wrong. They did find tiny neurofibromas in his last MRI. Do you think he may be feeling dizzy and thats why he is lethargic and wants to sleep? He started walking a few months ago but his balance is way off, still. He keeps falling. how can one tell? Do you have any advice? Drs are utterly clueless!!! I really appreciate it...

  2. It's a very tough decision to face. My prayers and thoughts are with you...I always believe that things always happen for the best no matter how bad it seems at the moment. I really do love your upbeat attitude

  3. I can't imagine having to make this decision. Know that, because of this blog, you have a stranger (a sister Christian and mom) praying with you through this--and for Bailey's future.

    1. Thank you for this...I truly appreciate your comment!

  4. It is a tough decision to make. The answer is what best for Bailey. Live in the moment that best for you and your family. Including the future.

    I've carried out the operation to remove AN on my right already. I loss my hearing (on my right ear) many years ago, I know how you and she feels now.

    Make the best choices! The future is with you.