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Lisa

I am a survivor of almost 20 years (was 22 y/o when diagnosed & had surgery). I had a Subependymal Giant Cell Astrocytoma on my 3rd ventricle. It was only the size of a pea (maybe a marble) but it was causing me problems…lethargic, flu-like symptoms, was hot when I should have been cold and cold when I should have been hot, headaches, mood swings, intermittent vision loss. The doctors think the tumor had been there all my life based on what it was composed of. The hardest part was looking in the mirror after the bandages had been removed and seeing my bald head. I had long hair up until my surgeries. For the longest time it was difficult for me to look in the mirror. It was a visual reminder of what I had been through. It took a while but my hair grew back. That, however, didn’t shore-up what was going on inside of me. There really wasn’t anyone who could relate and I felt so alone. My mother was afraid for me to try and walk and my father was pushing me to do more than I had energy to do. When I went out people stared at me (I was pale, thin and bald…they all thought I had cancer. Then I got the, “Thank the lord it wasn’t cancer.” I remember thinking…so does that make what I just went through chopped liver?

I am so glad I found this web site. I hope to be able to help those who are now going through what I went through 20 years ago. You are not alone.