I changed my mind several times during my decision. I had scheduled surgery and then dropped it, did it again. I ruled out any form of radiation. When it got down to the real thing I made a chart with all of the outcomes I wanted. Then crossed out the ones I knew would not be probable. I didn't have hearing to save. However, the thought did cross my mind, "what if they should find something in the near future that could help or what if it would come back". I went to cyberknife patient support site and contacted some of the doctors. Ultamately I went to a neuro surgeon that does both. She did not push me to any decision. All options were open to me. I am not good with decisions. I can't even decide what to have for dinner.
During the course of the conversation with the NR I ask if she had an AN what would she do. She said she would look seriously at CK and keep an open mind. I said I was concerned about control and later mutating cells from the tumor that caused cancer. She said they quote the figure at 1:000 for that the transformation because they need a number. However, there have only been about 5 to 6 cases of the happening world wide from any radiation treatment for AN. As for the control rate she said is bout equal to surgery for small AN's and is looking better all of the time. I have had the tumor for several years and did not know it. There are lots of people out there leading very normal lives and don't know they have them. After a certain period of time this will not consume my thought as it does now. I went on the internet and found people that had radiation as far back as 20 years and are still doing well and leading normal lives. Same with surgery. I am a confirmed coward and could just not do the surgery even though I had complete faith in Dr. Brackmann and HEI.
The NS also said she used to the a firm belierver in only surgery and both she and the NS that are sharing an office are going more and more to radiaion. This is not your parents radiation. A surgeon is is surgeon, they don't research or care about radiation. A radiation person does not care about surgery. If you have someone who does both then they don't like to reccomend you have one or the other. I had CK done starting 1/5/06. I am doing well, noise in my ear has changed it is louder at times and not there sometimes. Was always there before. The fullness in the AN ear is gone. Balance has changed. Was not good before. Now just different. Even my neurotologist that treats my AIED and was so opposed did admit to me that my balance will improve. This is not the thing he quoted to me when I was making the decision.
I am working, driving, laughting and still worried about what the future holds for me. I get better day by day about the worry. My friends that had surgery still worry about a little piece being left there. This changes us in ways others can not imagine and even saying it is not cancer does not make the difference. It is serious, life changing and. When you research keep the research to recent papers and forget what was written 10 years ago. Remember any reasearch can be twisted to suit the need. Prey, ask questions, and don't be afraid to change your mind a couple of times. If you didn't thin to much about it during the holidays maybe that is a clue as to how you would feel with CK or GK or what ever. I am not a patient person.
Sandy
