Hi! I was last a frequent visitor to this site in 2008/2009 when I found out that I had a ~1.5 cm AN on my left side at the age of 26. I opted for retrosigmoid surgery at Johns Hopkins in February 2009, and things were fine for awhile. In 2015, I developed hemifacial spasms on the AN side, which led me to get a second opinion about my situation. My doctors at Hopkins believed that the enhancement on my MRIs was scar tissue, but the folks at the University of Colorado, where I live now, felt that it was regrowth. After watching it for another year, the recurrent tumor made evident growth and is now poking out of the IAC. I consulted with Dr. Chang at Stanford and decided to move forward with CK treatment, which I will have next week.
I haven't done a lot of research about side effects and what to expect after CK because I already went through surgery and know that this should be much easier. I've already lost the vestibular nerve and hearing on the AN side, so I shouldn't have issues with that. Dr. Chang said it's possible that I will develop facial spams again from the CK but that they should subside as the tumor dies. So that leaves the potential issues of tiredness and headaches. Are those pretty universal issues after CK? How long do they last, and do they start immediately? Also, do you automatically receive steroids when you get CK treatment at Stanford? Is it Decadron or something lighter? The Decadron after my surgery was pretty nasty.
Thanks!
