Wednesday, April 28, 2010

What's Up Wednesday?

We were prepared for this doctors visit! We knew what to ask, and how to ask it. We were NOT leaving without knowing exactly where we stood in regards to this darn tumor!

A full hearing test was done, and the results were somewhat confusing. A definite change from last time, but still within "normal".

We talked about the ringing in the ears, change in balance and the headaches that Bailey has been experiencing. Dr. Giddings told us that THESE symptoms could be caused by the tumor, and examined her.

The tube he put in 6 months ago still looked good...and he was very impressed with the hearing test...saying that, with THIS kind of tumor, typically patients have pronounced hearing loss.

He did call the tumor a Meningioma, but said it could also be a Acoustic Neuroma....I wasn't impressed when he was fighting me about Bailey's NF1 diagnoses. He actually said Bailey had NF2, not NF1. I asked him how likely it would be, seeing that I had NF1. He had no answers.

He's a great doctor, and is being very thorough with the care and upcoming surgery plans....It's just this damn NF has to be so complicated, that even the "best" doctors have a hard time keeping up with all of the twists and turns of it.

He did agree that surgical removal was the best and basically ONLY option for Bailey. What complicates matters is this move to Denver. When I told the DR about this...he hesitated making an actual "date" for surgery.

First we need another MRI. This time they will focus on the tumor itself...then they will scan Bailey's spine. The Dr is worried about this tumor because in some cases, it can actually wrap itself around the auditory nerves.....If this is the case, surgery will still happen, except Bailey would possibly come out deaf in her right ear.

So, we will get this scan, and see the Dr back in May. From there we will make a plan. I worry though....Denver surgery would complicate insurance coverage.

One step at a time. Whew!


  1. Wow. That's a lot to process. I really feel for you guys.

    Have you done any research into the NF 1 and 2 connection. I don't know much about that.

  2. NF can be so complicated!
    What one specialist says can be nixed by another specialist all because of those twists and turns.