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I was almost as terrified at the prospect of having the required head frame attached to my head as I was terrified at learning of my brain met diagnosis. I could not have a general anesthetic. I had to be awake and sitting up during the head frame ordeal. I was so frightened that I was physically ill and literally shaking during my drive to and much-too-long waiting time (the neurosurgeon was late) at the Gamma Knife Center on the early morning of my treatment, after barely sleeping a wink all night.
All that in spite of my oncologistâ€™s and neurosurgeonâ€™s prior assurances that the head frame wasn't a big deal when I had expressed my fears. (Right! And when was the last time they had a head frame attached to their heads?!) In hindsight, why didn't they or my radiation oncologist prescribe (or why didn't I request) something to take the night before or that morning to help calm my anxiety?! As is often said, though, the reality wasn't quite as bad as the fears of the unknown.
In spite of my great psychic pain, I experienced little physical pain or subsequent memory of when the neurosurgeon and a nurse attached the head frame with 4 pins into my head, thanks to the drugs flowing into my vein at the time. After my Gamma Knife radiation treatment was completed, however, surprisingly I did experience pain when a nurse alone tried to remove the head frame, without the benefit of any drugs flowing into my vein.
In hindsight, why didn't she or the neurosurgeon or someone restart the same drugs that were flowing into my vein when the head frame was attached?! And one of the head frame pins was in my head so tight that she could not remove it. After she found the neurosurgeon, it took all his strength to at last loosen the pin and free the head frame from my head. I was given the take-home instructions for cleaning the four holes in my head (two in my forehead and two in the back of my head, but at least I still had all my hairâ€”it did not have to be shaved).
The actual Gamma Knife radiation treatment was uneventful (not painful nor frightening for me) and anti-climatic (lasting only 10 or 15 minutes, after waiting for hours after my head frame was attached to have a brain MRI performed and to have a careful detailed radiation-treatment plan completed for me by the Gamma Knife team of three doctors). By noon I was transferred to an inpatient hospital room for observation and recovery overnight, grateful and delighted to be head-frame-free and able to enjoy visiting with my husband, lunch, TV, and a nap. Having lived through the head frame ordeal once and now knowing what to expect and what to avoid and what to change, I would not be nearly as frightened if I had to have Gamma Knife treatment (head frame and all) again in the future. I know I could live through it easier the next timeâ€“and I know the head frame is a small price to pay compared to trying to live with an active brain met. But my attitude is if there is an equally effective alternative treatment that does not require a head frame (i.e., CyberKnife), then choose CyberKnife instead of Gamma Knife! I do understand, though, that there are cases of brain mets that are better treated or must be treated with Gamma Knife instead of CyberKnife. Also, side effects and risks are less severe with either Gamma Knife or CyberKnife, which both target radiation to the tumor, than with whole-brain radiation and traditional surgery.
I had some headaches and some pain and uncomfortable scalp numbness from the four head frame pin holes in my head after Gamma Knife treatment for a number of weeks. I was told that the scalp numbness might be permanent if a pin had accidently hit a nerve, and my neurosurgeonâ€™s attitude was, "You can live with numbness!"; but fortunately my numbness eventually went away. Also, I had fatigue for a number of weeks after Gamma Knife and CyberKnife treatments. I continue to have occasional brief feelings of imbalance; I continue to use a cane as a safeguard when outside my home. When my loss of balance was worse, I had two bad falls and broke my tailbone because of one of them. Also, since my two episodes of dizziness just before my first brain met was diagnosed, and because of occasional brief dizzy sensations, I have chosen to not drive a car unless absolutely necessary. I think I could safely drive now, but usually feel more comfortable not driving.
An indirect side effect caused from steroid use for brain mets was avascular necrosis in both hips. It has not worsened, but will not improve. The only treatment is hip replacement surgery if the condition significantly worsens. I must avoid unnecessary walking and other weight-bearing exercises/activities to try to prevent avascular necrosis in hips from worsening and to prevent pain. When traveling, I use a wheelchair in large airports to minimize walking.
I had one new small (about 7 x 7 mm) lesion (tumor) develop in the left cerebellum of my brain, for which I was treated with CyberKnife radiation "surgery." CyberKnife was newly available in my geographic area then. My (new) neurosurgeon said that because of the location and size of my new tumor, I could have it removed by traditional surgery, and biopsied, but because of the increased side effects and risks of such surgery without any certain increased benefits, he fully supported me in choosing the CyberKnife option. My radiation oncologist was also totally in favor of CyberKnife instead of Gamma Knife. CyberKnife was not frightening and not painful and was much easier for me overall compared to Gamma Knife, primarily because a head frame, required for Gamma Knife, was not required for CyberKnife. It was very tolerable to have the plastic-mesh face mask, required for CyberKnife, custom made for me in advance and then later "worn" by me during my one-time radiation treatment that lasted about 20 minutes. All of the detailed radiation treatment planning for me was completed in advance, based on brain CT and MRI scans performed on an earlier day, which eliminated the long wait that I experienced on the day of my previous Gamma Knife treatment. Also, it was an outpatient procedure unlike Gamma Knife, which required an overnight inpatient hospital stay. And, in my case, it required taking a follow-up steroid for much less time than my Gamma Knife treatment did. My only noticeable side effect after CyberKnife was fatigue. My CyberKnife treatment has been effective so far (more time will tell for sure), based on follow-up brain MRIs.
My oncologist said that if I have more brain mets in the future, he will consider treating me with the drug Tykerb (instead of or in addition to Herceptin, which I have taken for several years).
It has been 23 months since I was first diagnosed with brain metastases. My first brain met is now "scar tissue" (i.e., stable) and my second brain met is now in the early stage of successfully responding to CyberKnife treatment, based on brain MRIs, according to my radiation oncologist. Otherwise, I have no evidence of disease (active cancer) in the rest of my body, based on recent CT and bone scans.