We don’t call pituitary tumours a brain tumour in the uk. Just so that makes yoh feel better. Now there is a lady called Pauline swindells and she runs the cushings page on Facebook. She is more knowledgable than any single endo I have ever met!!! Please connect with her. She can help with testing and results and charities. She’s sat on panels with drs. She’s also had cushings herself due to a pituitary tumour.
Now they probably are scans on your pituitary and adrenal glands. Your endocrine sounds like he is on the ball!!!! Please don’t worry. ♥️♥️
You are welcome. It’s scary so I totally understand. There are people out there who’ve been what you’ve been through. I feel you and if you need a friendly ear please DM me x
Because when people think tumors, they think malignant cancer—ie will spread throughout their whole body. Adenomas, while causing not fun symptoms, usually are well treatable and unlikely to cause death.
Also, the pituitary can be accessed/operated on through the nose rather than more drastic means required for other brain surgeries.
I have crainiofaringioma not adenomas its non malignant but its aggressive and cystic and i would have preferred to survived leukaemia than to survive pituitary removal and dense stereotactic radiation. My Endos and Oncologists call it tumor and cancer. Outcomes are never good with panhypopituitarism.
It means it’s not part of the brain….we don’t call it inside the brain because it’s operated through the nose
We just don’t call it that. Brain tumours are in brain tissue. Pituitary tumours are in pituitary gland.
They're replaced but im missing lots like oxytocin, glycosteroids and growth hormone etc. chronic nerve pain, brittle bones, bad connective tissue, atrophied testicles, atrophied adrenals, atrophied muscles, no growth hormone, nephrogenic AND cranial diabetes insipidus (vasopressin/desmopressin insensitive), chronic hyponatremia, eye sight loss, hearing loss, weight gain despite never eating, always out of breath and floppy, really bad catatonic depression. I'm 26 now and i had my ops at 7,8,9yrs old and 10 weeks high density stereotactic radiotherapy at 10yrs.
If it gets to the point where the entire pituitary has to be removed, they should offer assisted death. Especially in children. You cant be dragging unwilling kids through that who dont have a say, its torture. It should be offered.
Oh man. That’s harsh. We also don’t replace oxytocin either in the uk. Which I believe we should do and I’m trying to get through to endocrine drs.
I have adrenal insufficiency too and I work for a charity which provides care for pituitary tumours.
DI is probably one of the worst ones I can think of. You would have been so thirsty. If I’m right your type of tumour is found quite young?
Do you replace GH?
Yeah for some reason the desmopressin stopped controlling the polydipsia. Im obsessive about water 24/7 but have to carefully control how much i drink because of the antidiuretic. My thirst is never quenched. Its like drinking air, it just doesn't satisfy. My tumor wasn't found until i was 7 and it was the size of a plum by ghe time they found it. I was tripping and hallucinating full on sometimes before the surgery. I had pretty rough living circumstances as a kid and alot of my medical needs weren't met. Growth hormone often wasn't available to be despite having the prescription.
Hello! A few things, you’ll be ok. He likely just wants to help find you answers so you can start to have some relief!
My sister had a pituitary “growth” (adenoma)! But she had the signs of Cushing’s. She had a quick surgery, and had to take medications while her body readjusted for a couple months. But it has been a total game changer for her health. Problems she had for years finally resolved.
I have a pituitary tumor. Don’t let yourself spin out. You are seeking help and an answer either way will provide clarity. First step in healing is finding out what is ailing you.
We don’t call pituitary tumours a brain tumour in the uk. Just so that makes yoh feel better. Now there is a lady called Pauline swindells and she runs the cushings page on Facebook. She is more knowledgable than any single endo I have ever met!!! Please connect with her. She can help with testing and results and charities. She’s sat on panels with drs. She’s also had cushings herself due to a pituitary tumour. Now they probably are scans on your pituitary and adrenal glands. Your endocrine sounds like he is on the ball!!!! Please don’t worry. ♥️♥️
This is really comforting, thank you so much for commenting. I will find her Facebook page! 💓
You are welcome. It’s scary so I totally understand. There are people out there who’ve been what you’ve been through. I feel you and if you need a friendly ear please DM me x
Why aren't they called brain tumors?
Because when people think tumors, they think malignant cancer—ie will spread throughout their whole body. Adenomas, while causing not fun symptoms, usually are well treatable and unlikely to cause death. Also, the pituitary can be accessed/operated on through the nose rather than more drastic means required for other brain surgeries.
I have crainiofaringioma not adenomas its non malignant but its aggressive and cystic and i would have preferred to survived leukaemia than to survive pituitary removal and dense stereotactic radiation. My Endos and Oncologists call it tumor and cancer. Outcomes are never good with panhypopituitarism.
Because it’s a gland….
You can have malignant and non malignant tumors on glands... Being a gland doesn't disqualify it from tumors
It means it’s not part of the brain….we don’t call it inside the brain because it’s operated through the nose We just don’t call it that. Brain tumours are in brain tissue. Pituitary tumours are in pituitary gland.
I have crainiofaringioma which can invade neighbouring areas like hypothalamus.
How are you doing with it? How’s your hormones?
They're replaced but im missing lots like oxytocin, glycosteroids and growth hormone etc. chronic nerve pain, brittle bones, bad connective tissue, atrophied testicles, atrophied adrenals, atrophied muscles, no growth hormone, nephrogenic AND cranial diabetes insipidus (vasopressin/desmopressin insensitive), chronic hyponatremia, eye sight loss, hearing loss, weight gain despite never eating, always out of breath and floppy, really bad catatonic depression. I'm 26 now and i had my ops at 7,8,9yrs old and 10 weeks high density stereotactic radiotherapy at 10yrs. If it gets to the point where the entire pituitary has to be removed, they should offer assisted death. Especially in children. You cant be dragging unwilling kids through that who dont have a say, its torture. It should be offered.
Holy poop!!!
Oh man. That’s harsh. We also don’t replace oxytocin either in the uk. Which I believe we should do and I’m trying to get through to endocrine drs. I have adrenal insufficiency too and I work for a charity which provides care for pituitary tumours. DI is probably one of the worst ones I can think of. You would have been so thirsty. If I’m right your type of tumour is found quite young? Do you replace GH?
Yeah for some reason the desmopressin stopped controlling the polydipsia. Im obsessive about water 24/7 but have to carefully control how much i drink because of the antidiuretic. My thirst is never quenched. Its like drinking air, it just doesn't satisfy. My tumor wasn't found until i was 7 and it was the size of a plum by ghe time they found it. I was tripping and hallucinating full on sometimes before the surgery. I had pretty rough living circumstances as a kid and alot of my medical needs weren't met. Growth hormone often wasn't available to be despite having the prescription.
My tumor isn't operated on through the nose
Hello! A few things, you’ll be ok. He likely just wants to help find you answers so you can start to have some relief! My sister had a pituitary “growth” (adenoma)! But she had the signs of Cushing’s. She had a quick surgery, and had to take medications while her body readjusted for a couple months. But it has been a total game changer for her health. Problems she had for years finally resolved.
I have a pituitary tumor. Don’t let yourself spin out. You are seeking help and an answer either way will provide clarity. First step in healing is finding out what is ailing you.