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.
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.
Yes I had a craniopharyngioma in 2014 at the age of 59. The entire tumor was removed. It’s been over 10 years since, and over time I’ve developed many isssues… ie, swelling in knees, slow slow walking, aches and pains here and there, some hair loss, very large abdomen in spite of super healthy diet.
Arthritis…. Extreme fatigue daily. And doctors don’t have any good advice. So frustrating. How about you?
Yes I had a craniopharyngioma in 2014 at the age of 59. The entire tumor was removed. It’s been over 10 years since, and over time I’ve developed many isssues… ie, swelling in knees, slow slow walking, aches and pains here and there, some hair loss, very large abdomen in spite of super healthy diet.
Arthritis…. Extreme fatigue daily. And doctors don’t have any good advice. So frustrating. How about you?
Hi @catty4, I can understand the frustration. Has it been determined that the swelling, aches and pains are related to the brain tumor and/or surgery? Or do you also have other underlying conditions?
Yes, I had a craniopharyngioma in May of 2014. It’s been just over 10 years, and I become progressively worse as time goes by. Ailments from head to toe, and no doctor can figure out how to help. Here is some of my ailments…. Thinning hair, scalp psoriasis, dry skin and pitting fingernails, swollen knees, I now walk very slow, dowagers hump which aside from how it looks is also painful, also lower back pain…. Not to mention the occasional brain fog. My life was good before this tumor, I miss the life I had before, but I do try to enjoy life as much as I can. I’d love to hear from some of you. Thx
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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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1 ReactionBTFC 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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1 ReactionHi 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.
Yes I had a craniopharyngioma in 2014 at the age of 59. The entire tumor was removed. It’s been over 10 years since, and over time I’ve developed many isssues… ie, swelling in knees, slow slow walking, aches and pains here and there, some hair loss, very large abdomen in spite of super healthy diet.
Arthritis…. Extreme fatigue daily. And doctors don’t have any good advice. So frustrating. How about you?
Hi @catty4, I can understand the frustration. Has it been determined that the swelling, aches and pains are related to the brain tumor and/or surgery? Or do you also have other underlying conditions?
Yes, I had a craniopharyngioma in May of 2014. It’s been just over 10 years, and I become progressively worse as time goes by. Ailments from head to toe, and no doctor can figure out how to help. Here is some of my ailments…. Thinning hair, scalp psoriasis, dry skin and pitting fingernails, swollen knees, I now walk very slow, dowagers hump which aside from how it looks is also painful, also lower back pain…. Not to mention the occasional brain fog. My life was good before this tumor, I miss the life I had before, but I do try to enjoy life as much as I can. I’d love to hear from some of you. Thx