Stein: No the tumors associated with NFII do not always grow at the same time, in fact it can be a number of years inbetween the appearance of tumors. That is not to say that they can't.
Pembo: I did not have symptoms of the regrowth, or so I am told. All the associated nerves were removed the first time around and the tumor was confined to the auditory canal, the nerves were not there. If the tumor had been left to grow big enough to come out into the "brain cavity" I would have possibly developed symptoms....but I got it out before that could happen.
Larry: To state the AN's cannot be seen on CAT scans is wrong, in fact my orginal tumor was seen plain as day on a CAT scan and I was very quickly ushered into the waiting room of MRI (that wasn't supposed to be done for another week) and the MRI done to ensure my safety to go home (that sucker was BIG!, the tumor was displacing the opposite posterior lobe, within MM of the brain stem and basically taking up all the "space" availble in there.). Now the average AN cannot be seen on CAT scans and certainly those confined to the auditory canal would not be seen (at least I don't think) and certainly MRI's are the gold standard for follow up on treated AN's.
My unfortunate circumstances of follow up are unusual for the AN patient, I believe most doctor's are aware for the need for MRI's as follow up.... I am no longer under the care of these doctor's and haven't been for some years. I have now been seen by 4 different neurologists in my life time and the only one who is worth anything was the one who found my tumor orginally but that was just his luck, he thought I had MS and put me in an MS study to get the testing done faster.....boy was he shocked when he got the call! I didn't continue to see me for a few reasons but one of them was that he lacked knowledge of how to handle my follow up.
Kathleen
