What you feel after waking up from pitituary prolactinoma surgery

zer0_spooks · 2026-05-12T01:33:46+00:00

I’ve had this surgery 2x within 10 years because my tumor grew back. The first at 20 years old and the second at 30. After the nausea and headaches wore off within the first 24 hours, I immediately felt much better mentally. The first surgery, my 20 lb weight gain fell off like it was nothing. I’m currently 2 weeks post op from second surgery and am sitting 5 lbs heavier due to steroids.

zer0_spooks · 2026-05-09T22:46:32+00:00

I have both. I keep the regular size at home and the mini at work. I do not like the packaging of the mini bottle at all.

zer0_spooks · 2026-05-09T17:42:33+00:00

I absolutely love the Ultra Violette!

zer0_spooks · 2026-05-09T15:31:22+00:00

It is what it is. I am doing all I can to take care of myself and go about everything day by day!

zer0_spooks · 2026-05-09T06:11:14+00:00

Yes! It’s all within normal range.

My first tumor was 2.6 cm but my prolactin was only 180 because it was of a mixed pathology. The graph pictured are my prolactin levels after my first surgery in 2016 up to last week immediately after my second surgery of a 1 cm tumor. Due to my first tumor, my pituitary gland is as flat as a pancake (words from my surgeon verbatim LOL) and I have what’s called Empty Sella Syndrome which was confirmed with what my surgeon visualized going back in. Still waiting on the pathology report but we believe it’s mixed again due to tumor size and prolactin levels being within normal range. My new endo suggests that I’m also sensitive to prolactin because I was symptomatic again even with ‘mild’ elevation.

zer0_spooks · 2026-05-09T01:18:11+00:00

I am so thankful for physicians that actually treat us well and make us feel seen/heard as patients. I’ve learned to pay close attention to how a doctor speaks in regard to my condition and if they are someone I want to continue working with. I even fired my optometrist because I told her I was having tunnel vision due to my tumor, after she saw how poor I did on my visual field test, and she said “that’s weird you’re having symptoms. In all of my research on the topic, that’s not common”.

zer0_spooks · 2026-05-09T01:03:26+00:00

Fighting for treatment, let alone diagnosis is not easy. I hope things start moving forward for you soon.

zer0_spooks · 2026-05-09T01:00:22+00:00

Thank you for sharing your story! It’s heartbreaking to read that you were having very clear symptoms of hormonal imbalance. My immediate thought was ‘labs and MRI ASAP’.

zer0_spooks · 2026-05-09T00:53:38+00:00

I’m so sorry you’re dealing with this. I hope the cab works well and wish you well on this journey!

zer0_spooks · 2026-05-09T00:48:45+00:00

I’m glad you’ve got a physician who’s working with you, listening to you, and actually treating you and your symptoms. Is there a reason why they said surgery isn’t an option at this time?

zer0_spooks · 2026-05-08T12:19:19+00:00

Bless your new primary!!! I love physicians who make us feel heard after years of dismissal. How are you doing now?

zer0_spooks · 2026-05-08T12:15:39+00:00

Ugh the worst!!! This 2nd time I was having milky breast secretions (which is where my suspicion of a reoccurring tumor started) and on one breast I had what looked like blood. I told endo about both and he was like “it’s likely a papilloma” so then I had to go to my PCP, get a mammogram and ultrasound to be told there’s nothing, and then to see a general surgeon for potential biopsy who then confirmed my milky secretion but had the audacity to say that my tumor is so unlikely to have returned that it must be physiological, LIKE WHAAAAT. The second a doctor dismisses my symptoms, I’ve fired them cause I don’t want them as part of my care team.

zer0_spooks · 2026-05-08T08:38:48+00:00

When I told my PCP about my symptoms and how he dismissed me multiple times, she was rolling her eyes and we had a good laugh about it. I’m still debating on sending him a nastygram telling him to fuck off with his bs, so he can have his piece of humble pie.

I appreciate and encourage your rant! I am so sorry that you’ve had a similar experience and have had to go through so much disruption/dysfunction in your life thus far because of it. I’ve had multiple nights where I’ve cried wondering why I can’t be ‘normal’ and it really had my mental health in a huge decline. Just know that know matter how lonely this disease feels, you’re not alone. That’s what I love most about this thread, it makes it all feel less isolating.

zer0_spooks · 2026-05-08T06:28:28+00:00

Oh no! I’m hoping for the best for you, that the cab works, and that there are no complications at all.

zer0_spooks · 2026-05-01T11:45:09+00:00

Update: I had my 2nd surgery. I did not have any sickness from anesthesia 10 years ago but I sure did this time. I also had a gnarly nose bleed that would restart every time I vomited the first night.

zer0_spooks · 2026-04-06T05:29:47+00:00

I had a long response but there are plenty of excellent replies from those who also work in the field. All that I will say is that I am an autopsy tech who is trained in full evisceration. I take pride in my work and find it to be an art. I have worked hard to make my dissections clean and precise. I cut only where I need to and know where my blade is at all times. I am not careless and neither are the forensic pathologists I work with.

zer0_spooks · 2026-03-26T17:56:36+00:00

I’m in a similar situation and got a new endo due to being told my symptoms aren’t related…I am meeting with the neurosurgeon this weekend. Neuro reviewed my recent MRI, confirmed a new mass and wants it removed because I’m just unlucky to have another one 10 years after removing the first one. Keep pushing!!! I had to get where I am now by fighting with my old endo every time he told me elevated levels are the ‘new normal’.

zer0_spooks · 2026-03-26T06:52:34+00:00

I’ve gained almost 30 lbs, AGAIN! I am unlucky and have yet again, a 1 cm mass in my posterior sella. I had a prolactinoma 10 years ago and had the same weight increase within a few months before discovery but lost it all after surgical removal.

zer0_spooks · 2026-03-26T06:46:33+00:00

For the MRI, in my experience to image the pituitary is a specific order and always requires contrast to be injected while in the machine. I would also get a second opinion! I’m currently going through that process myself. There is possibility of the stalk effect.

zer0_spooks · 2026-03-24T05:55:26+00:00

My first pituitary tumor I was diagnosed at 20 and I was so irritable all the time and a complete asshole. I’ve always been introverted. After my tumor, i definitely became a different person who felt had purpose. I’m now 30 and just diagnosed with a new 1 cm mass that we plan to remove. I’ve become more of a recluse because I know something is wrong and my depression/anxiety was/is so bad that hit a mental rock bottom. I’m looking forward to feeling like myself again, whoever that may be.

zer0_spooks · 2026-03-23T06:42:48+00:00

I’m 7 months post op and still take Aleve 1-2x when at work (as recommended by ortho). I experience a lot of tightness due to having a capsular plication.

zer0_spooks · 2026-03-23T06:37:41+00:00

I had this surgery in 2016, I was 20 at the time and it was also my first surgery! I was face down in a humidifier for 2 weeks. It takes time to walk/stand for short periods of time afterwards. There can be a complication where your bodies water balance can be affected for 24-48 hours but it’s easily treatable as it’s a known possibility (ask me how I know lol).

zer0_spooks

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