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Seeking others experience with a craniopharyngioma removal?
Anyone that has had a craniopharyngioma removed from your pituitary stalk?
Are you experiencing any vision issues if so what are you experiencing?
What about cognitive function?
Have you experienced proton radiation therapy? Any side effects from that?
I had a craniopharyngioma removed 6 months ago. My repeat mri is showing a small lesion which could be recurrence. Proton radiation treatment could be in my future. I’m already feeling like my vision has been affected and no longer drive at night. My processing just seems like it takes longer and sometimes the thought just won’t come to me. Just wondering about others experience with a craniopharyngioma specifically on the pituitary stalk? Thank you!
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@mcunningham78, I added your discussion and questions to the the Brain Tumor support group (https://connect.mayoclinic.org/group/brain-tumor-support-group/). I'm bringing fellow members like @tinks @cads @susieq8 @riggonian and others who have experience with craniopharyngioma surgery to share their thoughts.
Are you a candidate for proton beam therapy? How are you doing?
@colleenyoung thank you for helping me get connected. For now my surgeon and team will watch and wait for growth. We will repeat the mri in 3-6 months. My surgeon mentioned proton radiation as a next step which I expect if the tumor shows it is growing. It’s been 6 months since my surgery, I have been extremely fatigued and have gained quite a bit of weight which has caused some emotional ups n downs for me. I just got off the steroids, my body seems to be making cortisol now. I have hypothyroidism, Diebetes insipidus, anemia, my vision has been affected I am no longer driving at night. I am working and do very thankful it could be much worse! My nose, eyes, and face are still sore and hurt. I had a transphenoidal tumor removal.
Had my craniophariginoma removed 6 years ago.
It needed radiation after the operation and that fried my pituitary.
Glad to still be alive.
Most people I have known with brain tumors have passed away.
Hello! I’m sorry you are having issues after your Craniopharyngioma surgery. The symptoms you describe are pretty common post-Cranio removal. Are you receiving care at Mayo? If so, the Proton Beam Therapy (PBT) department is excellent. Our daughter receives all her cranio care at Mayo-Rochester. Are you currently seeing a pituitary endocrinologist and neuro-opthalmologist, in addition to a pituitary radiology-oncologist? Having a multidisciplinary Craniopharyngioma team is key because this is a tricky post-op brain tumor to manage. Weight gain is a classic Cranio challenge. Our daughter has been participating in a drug trial specifically designed for cranio-hypothalamic obesity (HO). The FDA just approved “Setmelanotide” by Rhythm Pharmacy. We are thrilled!!!
It’s been highly effective for our daughter with minimal side effects. Also, if you haven't already, check out the Raymond A. Wood Foundation for patients with craniopharyngioma, their caregivers, and medical providers—a tremendous resource. I wish we’d known about them when our daughter was diagnosed years ago. So many systems are involved in Cranio care and it’s emotionally and physically challenging -every day. Feel free to reach out anytime. All the best to you!
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3 ReactionsThanks for the info!
Stay well.
@colleenyoung Tnank you. I should go for radiotherapy preparation on April 10. Proton therapy is not something I think we have here or I did not hear of. With radiotherapy I will have temozolomide
@cads thank you. I am nit living in USA. I had obesity before surgery and lost 9 jg since. Waiting dor radiotherapy and hemotherapy nex wewk