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Dear Jo Jo,
Necrosis can also be a tough issue to deal with and as you know can cause the same symptoms as tumors, and also do damage as it continues to grow. I had a craniotomy last fall because my MRI lit up. It turned out to be just necrosis. I went into the hospital on Friday, was able to leave Sunday at noon. I took a week off from school and was able to return a week later on Monday. I had surgery in the prefrontal left cortex and healed quickly. It was more difficult for Steph. She can tell you about it or you can read her posts. I requested to get off the Decedron quickly and was weaned within a week. I could also not stand the anti-seisure drugs and pleaded to get off of them as well. They made me tired and it was hard to teach while I was on them.
Unfortunately, my post-operative changes have not resolved and the necrosis appears to have grown again, although it is stable. I recently had a PET-CT of the brain which was mostly cold, but a small section lit up. The MRI Spectroscpy was also inconclusive. As a result, I have to repeat these tests again in four weeks. I have no symptoms and the tumor board still favors necrosis, but they have to stay on top of it with these tests. I am keeping my fingers crossed that they won't want to do surgery again, because that would be the third time going into the same spot. The fact that we are so vulnerable to brain mets is what bothers me the most about this disease. I hope that now that we are living longer, that more research will be done in this area. You will be in my thoughts tomorrow, and I'm hoping that you will have the same quick recovery that I had. You will be so glad to get off the Decedron.
Best wishes,
Barbara Holz
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