One patient with glioblastoma still alive nine years later
by Krissalee85 on Mon Jan 14, 2013 11:01 PM
I had a tumor growing in my left temporal lobe for about 10 years before being diagnosed when I was 23. Apart from a few partial complex seizures a month and anxiety, I felt fine. After surgery, I never felt myself again. I had my entire left anterior temporal lobe, amygdala, and hippocampus removed. This was my only treatment, no chemo or radiation. It is said to be a mystery glioma- a hodgepodge of mixed glioma and glioneuronal tumor components. It's a grade 2. I was told that recurrence is inevitable, but to go on with my life. But my life has felt like it has been put on pause since the surgery. I always feel as if I am filled with posion, or that I am fighting off germs. My eyes are always bloodshot and puffy, my head twitches and pounds, I am unable to sleep normally- I usually fall asleep, have a quick dream and wake up every hour, often I lay awake for hours every night trying to fall back asleep- I have no energy. My doctors dismiss me as depressed. I am aware of what depression is. I know that this is not what I am feeling. I have every desire to accomplish my goals and to go out and enjoy my life. I love to read and go to the movies, but my eyes always feel so tired I have to shut them. What I am feeling is frustration. I have also had a slew of food allergies/sensitivities come up- gluten, soy, dairy, caffiene. I can't handle any alcohol anymore- 1 glass of wine makes me feel like my head is going to explode. I just do not feel well enough to go out, apart from walking the dog. I am 27. I feel like I'm 87. I would like to know if anyone else has experienced this after brain surgery.
by Krissalee85 on Tue Jan 15, 2013 04:27 PM
I am also wondering about the MIB-1 proliferative index. It seems that grade 2's are usually less than 2%, but mine was 7.7%. How can a grade 2 tumor have such a high index?
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