Craniofaringioma

Posted by fastedd1e @fastedd1e, Oct 1 2:06pm

Hello Mayoclinic,
At the age of thirteen, I went through a lot more than a kid my age can handle!! Being diagnosed with a rare Craniofaringioma that was the size of a chestnut was unbelievable, but TRUE!
I had surgery at the Hospital for Sick Children in Toronto.
Question... Are there any new advances in Pituitary repair? Also, what medications and replacements should a man be on, because of this condition?
Thank You, Ed
"edstekar@Aol.com"

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Janell, Volunteer Mentor | @jlharsh | Oct 4 5:38pm

Hi, @fastedd1e. I am super curious how you found Mayo Clinic Connect. I see that you have joined conversations in other brain tumor discussions as you wait for others to comment here. It is great to have you on Mayo Clinic Connect!

If you haven’t done so already, I am including a link to Mayo Clinic’s overview of Craniopharyngioma. No doubt contains information you are aware of. I want to draw your attention to the “doctors and departments” tab where you will find links to the areas that are currently researching the condition: neurologic surgery, neurology research, Otolaryngology-head and neck research. When you click to view each you will not only find summaries of what they are currently doing but also contact information to get hold of them directly. I encourage you to do just that!
-Mayo Clinic Craniopharyngioma Overview: https://www.mayoclinic.org/diseases-conditions/craniopharyngioma/symptoms-causes/syc-20581521

If you are interested in an appointment or 2nd opinion at Mayo Clinic you can use this link: http://mayocl.in/1mtmR63

How has life been since your surgery? Have you had long-term complications, such as hormonal imbalances or recurrent tumors?