Craniopharyngioma

Posted by rubyjane @rubyjane, Dec 28, 2017

I had surgery in the summer of 2015 for a craniopharyngioma. Anyone else been thru this? RubyJane

@susieq8

Hello! Sorry for the delayed response. My surgery went well and they were able to remove more of the tumor than expected. Pathology results came back with a Null Cell Pituitary Adenoma diagnosis vs craniopharyngioma. I’m working on managing post surgery symptoms of headaches, dizziness and fatigue. We do not yet have a treatment plan, but the doctors indicated that it is not necessary to rush into this phase. Hope all is well with the rest of the group.

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Such great news, Susie! All the best with managing the post-surgical symptoms. Please keep us posted.

@craniodaughter here's the link to the in-person support group in Rochester https://www.brainstogetherforacure.org/find-support/
Thanks for the info, @cads. Do they sometimes have guest speakers or is it usually a time for peers to get together and share.

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@colleenyoung

Such great news, Susie! All the best with managing the post-surgical symptoms. Please keep us posted.

@craniodaughter here's the link to the in-person support group in Rochester https://www.brainstogetherforacure.org/find-support/
Thanks for the info, @cads. Do they sometimes have guest speakers or is it usually a time for peers to get together and share.

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BTFC is comprised of patients, caregivers and medical advisor. Everyone gathers for welcome, introductions, announcements, then breaks into 2 groups (patients and caregivers). Physician spends time with each group. It’s a nice blend of seasoned patients and those newly diagnosed. From time-to-time a special speaker may be present.

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Hi all,
I thought you might like to know about the upcoming Brains Together For a Cure event. Here's more info: https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/brain-tumor-patient-and-family-education-symposium/

Hopefully as the weather gets nicer, you'll be able to make it. For anyone who attends, it would be great to get a synopsis.

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