Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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Endocrine System
/ Prolactinoma Support Group

Post-surgery update

chesterandspotty
chesterandspotty

Hello all,


I just had surgery on tuesday to remove my 10.5mm prolactinoma and it went remarkably well! I came home Thursday afternoon. 36 hours in ICU and the last bit in a regular hospital room. I'm in NC and was lucky to find two incredible neurosurgeons doing the procedure, which i think took about 2.5 hours. FYI, if you're considering the surgery, you want an "expert" surgeon, meaning he/she has done 500+ of these types of pituitary surgeries. if anyone is nearby/willing to travel, I can give you the names of these surgeons; the tools used for the surgery were invented by and named after one of the docs who did mine. I think technique and experience are of the UTMOST importance; another doc at a highly esteemed hospital didn't have any confidence in himself or the surgery, and he thought i'd be in "agony" for at least a month, whereas right now, it's 3 days post-op and i went out to do some light errands with my mom for a couple hours and felt pretty damn good.


There are a few complications that can arise with pituitary surgery because the gland is so delicate; i have to take cortisol now because my levels were getting dangerously low (leading to low blood pressure, dizziness, etc). I also had something rare (but not rare for pit surgery) called Diabetes Insipidus-not related to the usual type 1/2 diabetes- where you pee a ton (i had a catheter for 2 days) and it looks clear like water, yet somehow you're still dehydrated and incredibly thirsty all the time. They regulated that in the hospital with a medicine called vasopressin in my IV. I also got high blood sugar, which I've never had before. I took steroids, and I want to say it was for the low cortisol but not sure if that sounds right or not? I thought it was for the swelling in the brain but that wasn't it, after all. Then because of the steroids, I needed insulin. So long story short, i was happy to be in the ICU for 36 hours. None of these were massive complications, but lots of little things that needed attention. Will need to see an endocrinologist soon and keep that up for awhile. 


Still pretty fatigued, but not in the depressed, wanna sleep all day-kind of way i usually am, just in a way that my body is saying it needs some R&R. if anyone has any questions about the surgical procedure that i might be able to answer, i'm happy to, just let me know! I'm already so happy that i did it!

sarah98
sarah98
I want to do the surgery but everyone says that its dangerous im so sick of taking pills and the side effects that come from it. What you you think about the surgery?
sarah98
sarah98
Im 19 btw how old are you?
chesterandspotty
chesterandspotty
im 30. once i found the right doctors, they all agreed that having the surgery was the best idea for me. I've had such bad issues with depression and anxiety (and i think a ton of it was related to the tumor) that the docs didn't want to risk putting me on the meds because of the negative possible side effects. and while i'm not trying to get pregnant now, in a couple of years I'm sure that i will want to, and the tumors can cause major problems with infertility, so that also made me want the surgery. Granted i'm still only 3 days post-op, but right now i'm 100% happy that I've had the procedure. but like i said, you MUST MUST MUST make sure you have the best surgeons you can find. it's not an everyday procedure that all neurosurgeons practice regularly, so if they don't have an expert technique, they could damage the pit gland and just generally make recovery much more miserable than it needs to be.
chesterandspotty
chesterandspotty
Sarah, what kind of symptoms is your tumor causing?
sarah98
sarah98
Major headache, pressure on the nerves of the eye. I took dostinex and the side effects was horrible, depression nausea, I feel like im gonna faint every time I get up. But the medicine did not reduce prolactin levels it was 1400 and now its 1700. I dont want to take medicines any more I really dont know what to do
sarah98
sarah98
Can you please provide me with the doctors name and the hospital? Thank you in advance
Ashes
Ashes
Glad to hear you're feeling better, stay positive. Rest well.
Ashes
Ashes
I'm not sure if the symptoms before the medication were worse or the once I get from Caborgoline.

How is your post surgery recovery coming along?

Cheers
chesterandspotty
chesterandspotty
Ashes, hi! sorry for a late reply, haven't been on in several days. recovery is amazing!!! words really can't do it justice, i feel like i have come back to life, i haven't felt this alive in...im not sure, maybe even like, 5+ years!?!? I'm just like, feeling all the feels, so passionate about so many things, bursting with love and gratitude. And i cannot stress enough how much of an impact that f'ing little tumor had on my entire f'ing life. it wreaked havoc on every aspect of my being, ruined my and my family's quality of life and took all of us on a roller coaster that nobody signed up for. I feel so deeply passionate about spreading awareness about these prolactinomas and pituitary adenomas in general, because doctors JUST DON'T GET IT, and a very rare few make any connection between the tumor and the mental health effects. I was incredibly, incredibly lucky to find Dr. Nakatori Fukashima to do the surgery (google him, i will provide his information for anyone interested) who is a world-renowned neurosurgeon. Recovery has basically been a breeze. headaches for a week or so. 23 days out today: having issues with Diabetes Insipidus (basically its my body's difficulty with water regulation, so i drink a ton of water yet remain constantly thirsty and pee a lot; start a nasal spray medicine tomorrow. hopefully it will work itself out on it's own.) its a rare condition but not uncommon among pituitary surgeries. not at all related to type 1 or 2 diabetes. had to take hydrocortisone after surgery for about 10 days, mainly as a precaution. was on a low dose of 10mg in the am, no side effects, and tapered off easily. **Also, as of today, i've lost 12 pounds since the day of surgery!!! woooohoooo! started light exercise about a week ago, i'd say its about 25% what I do when i'm really truly healthy and fit. things are looking up! ask me any questions yall might have! i 10000% recommend surgery if you can do it!
ilovemy2boys
ilovemy2boys
Sorry to write this on here but I'm struggling with the site so please bare with me xx

Hi everyone I'm new here and just wanted to share my story to see of anyone can help me to understand. I'm 27 yrs old.


I had my first ever smear test 2 weeks ago and the nurse mentioned that I bled during it. As I got home I started with period like pains and lower back ache (which I still have now and then?) A few days later my breast started to hurt (bruised like feeling) So i went to my Dr last week as I had sore breasts. Iv also have a pain under my armpit for a while, I also leeked a clear discharge from my breast a few months ago and I have a strange purple nipple (this is all on my left breast) so I went to get checked out. I thought the pain may have been linked to the smear but the Dr confirmed it wasn't.  He had a look and feel of my breast and said I was quite lumpy and he could see the discolouration and referred me to the breast clinic. He also sent me for bloods. Well the bloods came back and I have high prolactin?? I have been suffering with bad head aches for a while and I'm always so tired. Has anyone got any ideas as to what is happening? I keep Googleing stuff but I don't understand. Thanks in advance xx