I had headaches behind my ear from day 3 after GK, especially early am, from 4 am on. I was told to take ibuprofen at bedtime for three weeks and it did stop the headaches, only to return when pain reliever was stopped. I went back on the pain reliever for 2 - 3 weeks with continuing headaches for 3 months. Eventually, after 3 months, facial paralysis set in and I went on steroids. Once on steroids the headaches stopped completely. MRI showed central necrosis of the tumor, a 1% chance with GK, which is a fluid generator. The edema (fluid build up) swelled both the tumor and brain adjacent to the tumor which impinged my facial nerve. The steroids quieted the fluid build up. Just had my 2nd year MRI following GK yesterday and my tumor is several millimeters smaller and brain stem is normal (no fluid.) Neurosurgeon stated 90% chance the GK has stopped the growth. I still have mild facial weakness and synkinesis though others notice nothing. I have regained full lid coverage of my eye and can hold liquids in my mouth. Massage and stretching help the tightness in my face from synkinesis if done regularly.
Our headache patterns differ, and my central necrosis is a rare adverse event, but be aware of the possibility of a potential problem with continued headaches, especially if in the area of the tumor.
