Hello everyone. I find myself part this very small percentage that needed gamma knife within a year of initial surgery and now 17 months post gamma knife my MRI shows my tumor (Trigeminal Schwannoma) has almost doubled in size. This is all so crazy. At my one year MRI post gamma knife, things looked promising. My tumor showed a tiny bit of shrinkage and necrosis in the center- that was this past April. I was fine all summer and then suddenly this September I started having increased numbness to my face, tooth pain, tingling in the face and jaw spasm or cramps(my jaw actually lock so. Lose for about 30 seconds). I asked to have an MRI done and this MRI only five months since my last one shows the tumor has doubled in size. Dr. Kondziolka had me talk to Dr. Sen because he feels I may have to consider having surgery. Has anyone experienced this much swelling 17 months after gamma knife? My surgery was a failure and now even gamma knife has failed. I'm 41 years old and I had surgery to avoid radiation not expecting to need to make the same decision not even a year after the surgery. The second time I chose radiation because I was told I would have the least side effects and that was true until now. I now have all these additional nerve issues that I am so afraid that whether I wait to see if this is possible swelling or have another surgery, these symptoms may be permanent. Dr. Sen, by the way, was wonderful. Very honest. He said the surgery would likely make me worse at first but hopefully any new deficits may not be permanent. He did say I would likely have permanent additional numbness to the face. It is the chewing function that I may also lose whether I have surgery or not. Has anyone had surgery post radiation and if so how was your outcome? Any doctors anyone would recommend I send my scans to? Thank you all for your support.
