ANA Discussion Forum
General Category => AN Issues => Topic started by: JoyDiane on August 30, 2009, 02:20:34 pm
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Hi Everyone,
I want to thank you all for being here! I've checked the site almost daily for the past month and have learned tremendous amounts from each of your experiences and from everyone's questions and replies. I have been researching my options since mid-July when I was diagnosed with a 1.3cm AN. Mostly I was questioning whether or not radio surgery, specifically Cyberknife, was a good option for me. I think I have found that it is. I am planning to pursue one more consultation at Stanford, this time with Dr. Steven Chang, before I make a final decision. I previously saw Dr. Blevins at Stanford who recommended retro-sigmoid surgery. I liked him very much but surgery scared me. I then saw Dr. Ross who enthusiastically recommended Cyberknife. She was so positive that my inner skeptic told me to do my research. I have been reading what you all say and also found a link to some studies on www.pubmed.gov. There seem to be favorable statistics re: cyberknife which, as I understand it, is fractionated radio surgery (a lower dose over several days as opposed to a one time higher dose). I still don't pretend to understand it all. I am still hoping to hear from people who have had radio surgery and read your opinions and comments. I hope that some of my research will help benefit others who are trying to decide treatment options as well.
Good luck and keep in touch,
JoyDiane
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Hi JoyDiane,
Welcome to the forum. This is a great place to talk to people and get advice. It looks like you have done your homework well. A decision is not easy to make but I think that deep down everyone knows what is right for them. I am still on W & W so I can't give you much advice about CK but I am sure a lot of others will reply and offer theirs. The one thing I did learn about the differrence in different radiation treatments CK versus GK is that CK offers more hearing preservation as opposed to GK and also from what I understand, with CK there is no headframe. Good luck on your journey and treatment.
Vivian
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JoyDiane .....
Others will be adding posts here before long who have had radiation treatment for their ANs, but I just wanted to say welcome to this forum of caring, supportive people! We all have very different stories to tell and we try our best not to scare anyone, while being as truthful as possible ..... so ask away!
Thoughts and prayers as you walk the decision-making process of this journey.
Clarice
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There are two fairly recent topics in the Radiation section that have postings from many of the recent radiation patients, as well as pros/cons comments from others.
One is Looking for Long Term Radiation Patients: http://anausa.org/forum/index.php?topic=10201.0
The other is Radio Not For Young People?: http://anausa.org/forum/index.php?topic=10258.0
Browsing through those should give you a fair idea of the range of experiences people on the forum have had.
I am happy with my own CK treatment, now two years ago, with no further growth and hearing stabilized.
Steve