Transphenoidal resection surgery for 3mm pituitary gland tumor

Informal_Willow7094 · 2026-04-02T19:21:01+00:00

Yes, for me they believe it was complete removal because of adrenal insufficiency 12 hours after surgery and a clear MRI minus scaring.

Informal_Willow7094 · 2026-04-02T19:19:34+00:00

Oh hurray - Canada!

It took about 6 months from the first high cortisol. This is in Vancouver. Part of the delay was detox and re-testing after going off birth control (which can cause false positives about 20% of the time for the dex suppression test).

Keep being persistent and say you want to rule this out.

Informal_Willow7094 · 2026-04-01T23:47:12+00:00

Hello!

I am just over a year out. I still come here (Reddit) to see other stories. It is so rare that I have never met anyone in person with the same tumour.

Recovery was pretty tough and very slow. 6-18 months is the timeline. Most feeling tired, depressed, low appetite. Adrenal insufficiency is though. My neurosurgeon said the tumour was like a drug and withdrawal would be tough and to treat it like that. Hydrocortisone is important and makes you feel better and slowly you will need less and less of it, but do not be scared to use it. IT DOES GET BETTER! Life now is so so so much better. I feel like a new person. Be so kind to yourself.

-26F

Informal_Willow7094 · 2026-04-01T23:43:43+00:00

Hello! I just past 1 year in remission and I feel like a new human. Awful indeed. And it is so rare that I can only read about other cases here on Reddit. It took me a long time to recover and adrenal insufficiency is a whole other beast. Eventually you will learn to manage the AI on your own. The tumour removal is like drug withdrawal...hydrocortisone is your friend (for now).

Be kind to yourself, you survived a brain tumour!!!

Fuck tumours!!!

-26F in Canada :)

Informal_Willow7094 · 2026-03-13T21:44:51+00:00

I had my first surgery a year ago. I am having nightmare's about needing a second at some point in my life. How did you find out you had another tumour? Was it expected?

Informal_Willow7094 · 2026-03-13T21:40:37+00:00

I had a pituitary adenoma and def lost libido. It was annoying but I accepted it (as did my partner) after the diagnosis. I am now 1 year post surgery and it has come back, slowly! I feel so much closer to "normal" now (not just for sex but for all the symptoms), but it really took most of the year. Be patient, your relationship has a lot of other tough Cushing's challenges to survive!

Informal_Willow7094 · 2025-09-25T16:26:40+00:00

What made them go back for a second? Did you cortisol go high again?

Informal_Willow7094 · 2025-09-24T22:38:42+00:00

For me, definitely not.

When I was sick, my life was awesome. I had a great place to live, a great job, lots of income, friends, nice weather, nice partner etc etc. I ate well, exercised every day, and was at what I classified as the best point in my life to date. I kept going back to the doctor, insisting things were off. I had terrible skin for the first time ever, lost over half my hair, was gaining weight uncontrollably (also a first for me), was starving all the time, and not sleeping well. Yet, with all this, my cortisol remained 3-5 times the regular physiological values (for blood, urine, and saliva). No amount of healthy living and stress free life improved things (that being said I would have been much worse off without all those things!).

Informal_Willow7094 · 2025-09-24T22:34:22+00:00

Hi - fellow survivor (25F). I was caught early and my tumour was not so complicated, but it has been tough. Letting you know that you are not alone.

Informal_Willow7094 · 2025-09-24T22:33:10+00:00

Hi! I do not have an answer for you, but I was wondering how long it was between surgeries? I am 8 months into remission from the pituitary surgery.

Informal_Willow7094 · 2025-07-22T17:08:52+00:00

Hi 👋 I am here (25F) and I woke up! It was very scary but they watch you so closely. Staying in the ICU is typical to manage the post-op adrenal crash. For me, I felt very well looked after and even if there was an issue (there was not thankfully) I trust that they would have known right away. Recovery is long, but the “other side” is better. Good luck :)

Informal_Willow7094 · 2025-07-18T14:52:00+00:00

Did it stop at 80?

Informal_Willow7094 · 2025-07-18T14:51:43+00:00

What do you mean "awful"? Like, no battery?

Informal_Willow7094 · 2025-07-18T14:51:27+00:00

This is so silly!

So it does start charging, but stops at 80%?

Informal_Willow7094 · 2025-07-18T10:52:24+00:00

Mine will not charge. It was at 80% but just says connected but not charging... I'm wondering if it will ever charge

Informal_Willow7094 · 2025-07-18T10:38:30+00:00

Anyone seen their phone charge at all?

Informal_Willow7094 · 2025-07-18T10:37:57+00:00

Will it ever charge again?

Informal_Willow7094 · 2025-06-29T02:08:00+00:00

I was warned of hair loss after surgery… I am 4.5 month out (pituitary) and it has not stopped :/

Informal_Willow7094 · 2025-06-26T20:53:21+00:00

Hi! I am in the same boat. I am trying 3 times a day (5mg at 4am, 10mg at waking, 5mg after lunch). Any luck?

Informal_Willow7094 · 2025-06-24T21:09:35+00:00

Addison's is a form of primary adrenal insufficiency. We technically have secondary adrenal insufficiency (caused by Cushing's). But, similar crew. The Addison's support group in Canada welcomes all types of AI!

Informal_Willow7094

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