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Craniopharyngioma surgery

Brain Tumor | Last Active: Sep 27 10:28am | Replies (36)

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@rubyjane

Hi, I am not aware of a support group regarding craniopharyngioma. My surgery was in June of 2015. At that time I was 62 years old. I would gladly share some insights with you and your mom. What questions do you have a this point? rubyjane

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Replies to "Hi, I am not aware of a support group regarding craniopharyngioma. My surgery was in June..."

Thank you so much for replying. Maybe we need to start an online support group! My mom is about 2/3 of the way through radiation and each day her memory, confusion, and vision loss seems to get worse. I am wondering if this is a side effect of radiation that is temporary. Her doctors are aware of everything, but because I live so far away from where she is receiving treatment, I haven't been able to speak with the radiation specialist directly. They scheduled further testing to see if there is fluid build up somewhere that could be drained, but beyond that they don't know why her vision is decreasing. While I am very thankful the tumor is benign, it still seems they can wreak havoc. I know everyone's journey is so different, but it would be great to hear how people have coped with these symptoms. Again, thanks for responding rubyjane!