I do not want people to take my previous posts the wrong way. We should use each other and as m any resources as we can. What we should not do, in my opinion, is use the information that we obtain, and suggest to people this is the way, or not the way to go. This board is a wonderful source of information and comfort but again, we should all understand that this is what it should be about.
With my story, the PET Scan came up negative, meaning that I do not have cancer. They also had a different radiologist read the original MRI and it was his opinion that it did not look like an acoustic neuroma. Then what is it? No one knows. It could be nothing, it could be a facial neuroma or who knows what else. Since it is small, the doctor wants to wait 6 weeks, re scan me and then she whats up. If it is a facial neuroma, six weeks will make very little difference and my doc, a surgeon, said.....I am doing my job if I am able to tell a patient he does not need surgery.
One other point....I had sent the MRI films and report to Dr. Adler at Stanford. He callled me back immediately and said that radiation was the answer with such a small acoustic neuroma. He was pleasant on the phone and it was also something I wanted to hear. My point being, that it may not be an AN afterall, and that is why we have to all be careful where we are getting and consults and info from. Adler is wonderful, but we all know he has a vested interest in the CK and even though I would love to think that doing the right medical thing is what is most important, he has his slants, as do all doctors. I think that is why when we are exploring our options and looking for docs, it is extremely important that we find docs that will tell us the way it is, not just what we want to hear and not just what they may be trained to do. I was lucky in finding Dr. Sen and Costantino, who are well regarded, and busy, but who, to m e, felt like they were treating me as they would another family member.
Anyway, I just wanted to share with you that information, and again, my point to all of this is to educate myself and to share with others what I am learning so that it could help others. What will happen with me is anyone's guess, but whatever it is, I will continue to provide the information that I am receiving so that it could help others.