× Craniopharyngiomas are intracranial tumors that are typically both cystic and solid in structure. They occur most commonly in childhood and adolescence and in later adult life after age 50 years.

Daughter diagnosed in 2013

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Replied by PNA-Tammy on topic Daughter diagnosed in 2013

I apologize for not sending this information sooner. We have been working on an Endocrinology Conference as well as other projects. Here is a link to the page with Physician information contained here on our website. pituitary.org/medical-resources/physicians
The physicians listed here are pituitary specialists.
4 years 5 months ago #10081

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Replied by leighrowe on topic Daughter diagnosed in 2013

Thank you for your reply. We have seen an endocrinologist but that was last year and so many things have changed since then. We would love to be able to contact a pituitary specialist who can help us. We feel like we are at a dead end at the moment. Is there a list of specialists available?
Thank you again
4 years 6 months ago #10079

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Replied by PNA-Tammy on topic Daughter diagnosed in 2013

I am sorry for all you and your family have had to go through. Has your daughter been to a pituitary specialist? We are not medical professionals here but we do highly recommend treatment by physicians that are experienced in treating patients with pituitary disorders.
4 years 6 months ago #10077

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Daughter diagnosed in 2013 was created by leighrowe

My 15yo daughter was diagnosed with a Craniopharyngioma in March 2013. She underwent transphenoidal endoscopic surgery in 2013 to debulk the tumour as much as possible, she was also suffering from Hydrocephalus due to the size of the tumour. In March 2014, she underwent her second surgery as the tumours regrowth has been extremely aggressive. Surgeons have said that it grew back in 12months what they would have expected after 5 years. Surgeons have said that they have debulked as much of the tumour as they can and that all that can be done now is radiation therapy. She is starting that this week. We have been told that any regrowth that occurs after the radiation treatment will have to be treated with surgery as no more radiation can be given to her brain in her lifetime.
She has been on full hormone replacement since her first surgery, we are still waiting to start the growth hormone replacement due to the delay in approval from the medical board.
She is still suffering headaches everyday, weight gain, aching body parts, depression, fatigue, concentration and memory problems, some hair loss (prior to treatment), eyes get tired. She has lost part of her eye sight due to the pressure from the tumour on her optic chiasm, and her eyes still get tired every day. She also gets sore feet (soles) after walking for short periods. Prior to the second surgery she was a confident, capable, out-going, fit young person, now she is struggling with day to day activities. We are not feeling supported by the medical professionals and feel something happened during the second surgery that we have not be told i.e. hypothalamus affected during surgery. As you can read her quality of life has been greatly altered by this tumour.
We live in New Zealand, other than what we read on the internet we are finding it very difficult to find sufficient information
and support about how we can help our daughter, what the long term effects of the medication she is using, other treatment options, is her life span reduced because of these on going complications etc. We have so many questions but no one to support us and help us find answers.
Any advice?
Greatly appreciated.
4 years 6 months ago #10076

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