Basic Info
A craniopharyngioma is a benign, slow growing tumor that resides near the pituitary, which is kind of underneath the brain. The location is the kicker. Hard to get to, and the tumor itself is often too close to the pituitary.
Treatment is typically a surgical attempt at total removal, or a combination of surgery and radiation therapy. Complications occur when this disrupts the nerves to the eyes, the pituitary, or the hypothalamus. Some sort of hormone replacement therapy is indicated in most patients. This is something I am working on getting my head around...and it's hard. Another thing that's hard:
The tumor can come back.
Google "craniopharyngioma" and you'll come up with lots and lots of information. I might or might not compile some here. Some if the information is downright disheartening. After doing a few days worth of research I spiraled into a black funk that was hard to shake.
Anyway, here's the search:
Craniopharyngioma
Despair.
Yet, in the darkness, there's hope. There is an online support group. Once again, google "Craniopharyngioma Support Group". Once again, the link to the google search is below:
Light in the Darkness
I joined the email list. I received a lot of information from concerned and caring folks who'd been there before me. They provided me with a lot of initial information and with important questions to ask the pediatric neurosurgeon when I consult with her.
Tenatively, Conner's first consultation will be on June 13th, at 2 PM. Dr. Karin Muraszko, the Chair of the Neurosurgery Deptartment at the University of Michigan, or her partner in practice, Dr. Hugh Barton will be the one's Conner sees.
That's 7 days away. 7 days of hope, 7 days of despair. 7 days of Conner suffering through the headaches that brought us to the diagnosis.
Treatment is typically a surgical attempt at total removal, or a combination of surgery and radiation therapy. Complications occur when this disrupts the nerves to the eyes, the pituitary, or the hypothalamus. Some sort of hormone replacement therapy is indicated in most patients. This is something I am working on getting my head around...and it's hard. Another thing that's hard:
The tumor can come back.
Google "craniopharyngioma" and you'll come up with lots and lots of information. I might or might not compile some here. Some if the information is downright disheartening. After doing a few days worth of research I spiraled into a black funk that was hard to shake.
Anyway, here's the search:
Craniopharyngioma
Despair.
Yet, in the darkness, there's hope. There is an online support group. Once again, google "Craniopharyngioma Support Group". Once again, the link to the google search is below:
Light in the Darkness
I joined the email list. I received a lot of information from concerned and caring folks who'd been there before me. They provided me with a lot of initial information and with important questions to ask the pediatric neurosurgeon when I consult with her.
Tenatively, Conner's first consultation will be on June 13th, at 2 PM. Dr. Karin Muraszko, the Chair of the Neurosurgery Deptartment at the University of Michigan, or her partner in practice, Dr. Hugh Barton will be the one's Conner sees.
That's 7 days away. 7 days of hope, 7 days of despair. 7 days of Conner suffering through the headaches that brought us to the diagnosis.
posted by Shaf @ 8:21 PM
1 Comments:
At 5:18 PM,
Anonymous said…
my daughter Magan was diagnosed in 1999 at age 10. She is now 16-six surgeries later, we are still battling this nastey tumour. She is basically well. Total hormone replacement and sonme social difficulties, but a joy to behold . Be strong- you must be one step ahead of this tumour. Follow your instincts- they are usually right. Only you know your child.
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