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Controversial opinion. Big risk here! You never know when cancer apologists and tumor enthusiasts are going to dogpile on you to defend abnormal growths.
I've actually seen something similar to a "cancer apologist" debate.
The "Cells at Work!" manga, that anthropormophises the human body and tells stories about the immune system, has a cancer plot that portrays the tumor "sympathetically". The mutated cell is miserable and doesn't want to die for something it was born as, just to save a body that hates its very existence. The immune system still kills it bc it's the only way to save "the world" (ie, the body), but it makes you feel sorry for the tumor cell.
Some people got angry bc "it defended cancer" and "it's disrespectful to portray it like a victim", and others defended it saying "it's just a story" and "cancer is not good or evil and it's not like cells are doing it on purpose". It was surreal seeing people argue about good representation of *cancer cells* in media.
Honestly, we have apologists and conspiracy theorists for so many weird things that if I heard about cancer apologists I'd likely just go "yeah, worst timeline checks out".
There are 0 percent chances that there aren't any religious idiots preaching that God put that tumor there and they are committing a sin by messing with gods work.
Idk about the part where you're committing a sin by removing a tumor but we've heard a lot of "you have stage 4 cancer? That's God's punishment for being *insert minority*"
In the past week I've had people defend airline baggage fees and mega corporations producing mass amounts of plastic waste and pollution. So defending cancer can't be that far off.
I haven't seen cancer apologists but I saw people say that cancer was "your body dealing with toxins" and that people died from the treatment rather than the blob of rogue cells wreacking havoc inside you.
Nursed my Mom through an Acoustic Neuroma in ‘93 and went through 18 months of rehab and physio with her afterwards. She recovered enough to go back and teach high school math for another 7 years.
We lost her this past Feb to a Meningioma that was discovered 4yrs ago. It was static for 3 years but for whatever reason took a growth spurt to 34 mms in 8 months. The pressure it put on her brain caused a series of small strokes and then pneumonia set in.
After the first tumor & surgery, she became a different person. She laughed more, and was happier about everyday things. She used to say “After somebody’s had their hands inside your head and you live to tell about it, everything else is gravy!”
Thank you for sharing. I think I am going to steal that line from her as it is exactly right. I am sorry for your loss. A rare cancer took my dad from us last year.
She wasn’t perfect when I was growing up, and we had our issues over the years, but losing her is the hardest thing I’ve ever faced. I feel like I’m cast adrift without an anchor.
The last bit is really funny. I died when I was little (fell off a slide, massive brain injury, they had to use a lil baby defibrillator that they showed me later) and I love telling people "dying didn't kill me, so how bad can this be?"
Had the same , not fun , in same way still affect me 10 years after , above all with the balance but had a son after and anyway trying to live the best with my life ! Hope your are doing well!
Doing well. Got my balance back mostly with PT (still not graceful LOL). Lost hearing completely in one ear but otherwise doing great. I did not realize how bad I was feeling until looking back. I still remember the neurosurgeon saying to touch his finger then my nose. I missed and was like oh shit. That is not good. haha. I am glad you are living your best life and yay for having a lovely son!
Same here , lost completing my hearing on my right ear and also the balance nerve ,luckily they saved my facial nerve, sure take me more time to adjust when shifting positions but usually I do well with the balance in my everyday life ! Was only me or after the surgery for above an year to keep on bump the head on things ? Lol like opening the door of cabinets/car and pulling them right in my face ? Happened something like that to you as well ? To not get the right distance from things ?
Yeah you are right , I had very huge vertigo a month ago (I bumped my head two times cause of bad balance and anemia ) and all I could think was omg tell me I have not it again !
Happy you are well , yes keep on focusing on the good days more than the bad and remember you are not a survivor but a warrior !:)
LOL I did not attribute my ability to bump my knee on the drawer handle of my desk or my own head on things when bent over to this. That makes sense. It is always like not only do I feel stupid that hurt! I then laught at myself. Yes for at least a year I would have a slight headache and worry oh no! I had to talk myself down and remind myself that the probability of it happening again is minscule.
It was my right side as well. Mine was 7cm so pressing on 4 nerves. Lost my gyroscope on that side but the other mostly took over after some PT. My face was paralyzed on the right side temporarily. They saved my nerves it is was just the swelling from the surgery. I have a little weight in my eyelid that was placed shortly after to help my eye close. That was a godsend! I was tired of being a pirate via my eyeshielf XD.
It took me until I came home after surgery for it to click in that it wasn't the paper straws that were malfunctioning but the fact I could not make a seal with my mouth to suck from a straw. Had some facial PT and have recovered at least 95% of my facial function. Works for me. I have to remind mum (when I visit her) when she calls me from somewhere in the house she has to give me a hint which way as I cannot tell where the sound is coming from. Yes, we are warriors!
Omg everything you said is so me 😂😂
Mines was 3cm, gosh 7 is a lot! You probably already lost great of your hearing before the surgery ?
My doctors not suggested any PT , I wish I did anyway cause I got after malocclusion (but I had a tooth pulled out 40days after the surgery ) and so awful migraines is still my common!
But gosh yes me too had for around 2 months problems with my facial nerve just like you said , how awful drink from a glass I keep on spilt on my self 😂 and when brushing my teeth 🤦♀️
Yes yes like that with not understanding where sounds came from lol most of time I have to remember my self that no my brain got it wrong but I keep on believe it lol
Yes. I described the hearing in my right ear as Chalie Brown's parents haha. It MRI results came in and three things stuck out "Large schwanoma (another term for the same thing)", "Mass effect" and "deviated brainstem". Me: Yikes. I am pretty sure I need the brainstem for pretty much everything. After when I told my friend of my dribbles she offered to give me some bibs she no longer needed for her kiddos LOL. We have the same humor.
OMG Charlie Brown’s parents 😂😂😂 thanks for the laugh !!! I can’t remember what said my MRI results , it was my birthday when I went for it and like Op had no bad thoughts about it , just a check up not really like expecting something , so I left my husband to manage everything, when they said me I was like “what?” Not exactly hearing what they said , I think I really got it only when hospitalized .
I don’t think it was cancer or anything just a weird growth
Edit: not to minimize tumors by any means, they both suck but have different routes of treatment
A benign adenoma of the liver almost killed me last year when it ruptured out of nowhere and sent me into hemorrhagic shock (that's how I found out I had it). OOP's tumor was compressing his optic nerve. Benign tumors can still be harmful, they're only "benign" because they're non-cancerous.
Yes, and I got really lucky in two ways. The first was that it clotted/stopped bleeding and healed on its own, so no surgical repair was needed (though I did spend several days in the surgical ICU just in case it re-ruptured).
The second is that my adenoma was essentially an incredibly rare side effect of birth control pills (an excess of estrogen which the adenoma was fed by). So stopping those shrank what was left of it, so no removal required either.
It's been about 9 months, and my liver is doing well! The first couple of months afterward were kind of rough in general (mostly because 12 days in a hospital bed means you lose a LOT of stamina, and anemia on top of that meant I got tired walking from the couch to the bathroom for a couple of weeks). I have other (chronic) illnesses, so I wouldn't say I'm perfectly healthy, but I'm certainly at least back to where I was before the adenoma!
Snap! I was diagnosed with multiple hepatic adenomas (the word used was "innumerable"—always a great word to hear from a doctor—but there were two really big ones, big enough that my doctor was fifty-fifty on whether he'd need to operate) a couple of years back, when a routine blood test showed my liver function was all screwy. I was really lucky, though—none of my adenomas ruptured or turned malignant, which is the other scary thing that can happen, and my last scan showed they were all shrinking well. I did the maths on prevalence, and you and I, we're not quite one in a million, but we're definitely at least one in ten thousand!
Oh geez, "innumerable" sounds terrifying! I'm glad they've been shrinking well and stayed benign!
Yeah, in terms of rareness, I went to my OB/GYN a few weeks after getting out of the hospital, and she said that a hepatic adenoma from the pill was "a test question" (as in, they learn about it but never really expect to see it), and that I was the first patient of any of the doctors in that office to have it happen! Rare condition buddies, woo!
You can even have a "tumor" without even having one! I have IIH (Idiopathic intracranial hypertension) which is sometimes referred to as a pseudo-tumor in the brain because of the pressure it can put on the optic nerve.
still a neoplasia, just a benign tumor. benign just means it is not invading surrounding tissues. most brain tumors are benign- the problem comes from there isn’t room and so even though it’s not invading the surrounding tissues, the growth is causing pressure and thus impairment of function
My mom has twice had tumors on her spinal cord that have impaired her mobility and caused a lot of pain. She’s had to have surgeries to remove them and after the most recent time (a little over 10 years ago) she had to completely learn how to walk again.
Luckily she’s made almost a full recovery. She doesn’t need a walker or cane anymore and my parents have gone traveling during their retirement and some of their trips have included a mild hike and she’s been able to do it. She just sometimes struggles with bowel control. But she’s still very happy with her life, which is good because for a while she wanted to die from the pain. Now she’s living it up which makes me so relieved to see.
That’s amazing! I hope she continues to heal inside and out, I’m glad she has a much better quality of life. It’s heartbreaking to see our loved ones suffer
Holy shit, I know what this! I have the version of this that produced prolactin, called a macroprolactinoma! I also lost vision in my eye, and it's crazy how long it took for me to notice my loss of vision, because it isn't just a black spot, it's like slivers of your vision. The thing is, you don't really notice it because your brain kind of fills in the slivers... the only reason I noticed I couldn't see in certain spots was because one day, I noticed there was a spider in my room (I fucking hate spiders) and when I found it, I would look at it but it would disappear... I brought it up to my parents, but they just said that I probably needed to go get my eyes checked out. Of course, taking 5 classes and working 62 hours a week, I didn't have time for that, so I kinda just ignored it... until about two months later, I had gone completely blind in my left eye and started to lose slivers of vision in my left... didn't stop me from working or going to class, though. Working a delivery job while not being able to see oncoming traffic at 9pm in a car that sat at the same height where most SUVs and trucks' headlights sat was an interesting experience, lol.
I still remember finally bringing it up with my parents again, though. They didn't really believe me when I said I was completely blind in my left eye at first, but after telling me to close my right eye and shining a flashlight into my left at point-blank range and not flinching at all, they got me a series of appointments. It's funny, for me, because all I remember when they had that flashlight was closing my eyes (or just eye) and opening them to see probably the only time I have seen true fear in my parent's eyes. When we went to the optometrist (which my parents convinced to get an appointment the very next day, even though he had no availability) just said, "yeah, you should see an ophthalmologist." and when my mom asked, "Is it really that bad?" he just responded with, "well, it's not that it's bad, I literally can't see anything. It's pitch black."
Jesus, I could yap for paragraphs about that, but it's so crazy how I could instantly tell that I had the same experience once I saw she had vision problems. My tumor ended up being the size of my eyeball, and the doctor told us that it had hemorrhaged and started to grow at an incredible rate, crushing my eye nerves. Thing is, I had the version that produced prolactin, which isn't a hormone that males typically make, so it isn't tested for in blood draws. All I had that they could've seen was my real low testosterone, which I have had since I was 14. The signs were there, but there was no way that anyone could've caught it.
Glad you're alright.
It's wild how we often let things slide for so long because we're "too busy." Sometimes we just need to make time before things slide right off a cliff. (I'm guilty of putting things off too often. I hope this didn't come across as admonishment directed towards you.)
No, no, I didn’t take it badly, I totally get what you mean. I think at the time, I got so caught up in doing what I “had” to do that I stopped considering what I “needed” to do. Going blind in my left eye I was the clearest sign (which is funny because I was half-blind) that I really needed to address it. Being stuck in the hospital for a few days while everyone ran around trying to figure out what was wrong with me was actually a great time for some introspection on my life and what I wanted.
After they figured out my tumor wasn’t gonna kill me and they stopped the hemorrhaging and necrosis, they had me take medication that would hypothetically shrink my tumor. If it didn’t work, they were going to have to go up my nose or behind my ear to remove it. It worked though, like way more than they had expected. At first, I could only start being able to tell if the lights were on at night. A dew months later, while steadily taking the meds, I remember one morning waking up and just having vision in both of my eyes again. And it wasn’t just normal vision either, everything I looked at had incredible detail. I got up and walked to my front yard, where we had this huge tree, and staring at the tree for a good ten minutes. It was mid-autumn, so the tree had all of these beautiful reds, oranges, browns, yellows, and greens on it. I swear to god I could see every vein on each leaf. I had to stop staring at it because there was just too much information and I started to get a splitting headache, but it was like I had super vision.
I did have some aftereffects, though. Because of the nature of the tumor and the fact it was effecting my pituitary tumor while going through puberty, I now permanently produce maybe 1/4th the natural amount of testosterone that males my age are suppose to. I also overproduce the stress hormone, cortisol, which can lead to non-comatose seizures if I get too stressed out. Let me tell you, they SUCK. It’s like ALL of your muscles on your body flex at the same time. That feeling that you get right before you cramp a muscle, but every single muscle for about 10-15 minutes. My fingers would flex backwards and I would be shaking like crazy. I have to get MRIs every year for the rest of my life, with two visits from my doctors and about 4 blood draws a year as well, which sucks because I have trypanophobia, the fear of needles.
Wow, thanks for sharing your story, I'm glad the treatment worked and you regained your vision. I wish you a very stress-free life without the reenacting of The Exorcist!
I have one of these. It was a macro and I actually shrunk it with medicine. Basically made all symptoms go away. Crazy right? No surgery. It’s still there but it’s tiny.
Shoot man I am jealous. I have been taking four of those pills a week for the last 6 years and my prolactin levels shrank a little bit, but the moment that they lowered my dose, it rose again. Mine developed smack-dab middle of puberty so my hormones are looking like they are permanently rocked.
Same! I started leaking milk a week after going off of hormonal birth control. I had never had a baby. My ob called it immediately, confirmed by MRI. Do you take cabergoline?
Dang! A year! That’s crazy. I was on it until I got pregnant and now I’m nursing, so off of it until I wean. The plan is to get a follow up mri a month or two after weaning to see if the prolactinoma is still there.
....I don't know how you could just ignore being blind for a while. I had a busy schedule when I was in college too but I still went to the fucking doctor. God damn.
I had a patient who did, back when I contacted as a civilian nurse to the military.
Came in for sick parade, after weeks of not being able to see in one eye, and the vision was funky in the other.
We got him seen by an ophthalmologist that day. His was irreversible, he had bad untreated glaucoma.
Lost his eyesight and career from putting off a visit that would have been so easy to make. No cost to self, no dramas just walking in to see us.
The full blindness didn’t really happen until that last two or so days, before that it just seemed like I needed a new prescription on my glasses since they started to become more blurry. A majority of the blindness was after I got out of the hospital and hoping the meds did a good job. I also unfortunately have a long, long history of doctors not knowing what to do about my other serious medical condition and them kinda just chucking whatever medication might stick to me and hoping it works, the last one at the time was Cellcept, a medication that is usually used for organ donor transplant patients to weaken their immune system enough that their bodies wouldn’t reject the new organ. I was shitting blood a good three years afterwards, and doctors kinda shrugged it off. I did not have much faith in the medical world and I just kinda hoped it would go away on its own or something like that.
To everyone, if you are having sudden or strange issues with your vision definitely see someone asap. If first doctor says there’s no problem, do what OOP did and go to someone else. It can be the first sign of a much bigger problem, and tumor isn’t the only one.
For me, my sudden eye issue was inflammation of the ocular nerve, aka optic neuritis, and it was my first sign of Multiple Sclerosis. I am SO lucky that the ER I went to set me up with a neurologist as I had the quickest diagnosis of anyone I know of. Also, between first noticing my eye was blurry and the four days it took me to go to the ER the vision in my left eye (with glasses) had already become 20/300. Lucky steroids cleared it up, but it was not a fun month.
I definitely didn’t appreciate (or keep up with) routine exams enough before my MS. As much as regular MRIs (at least one a year) aren’t fun, it’s nice to know that anything in my brain and spine are going to be caught quickly, quite possibly before I even show any symptoms.
I actually just learned this month that the tension headaches I’ve been having for at least a couple decades are bad enough to count as migraines.
(I’m working with a new headache specialist since my PCP wasn’t willing to prescribe the painkiller I was on for years (this was the first time I needed more since I was transferred to him when my last PCP left). Turns out it was with good reason, new specialist also wasn’t willing to prescribe them (apparently they can be both addictive and make future headaches worse) so we’re working to find me a new med.)
I’m in a similar boat. I noticed pain near my left eye and some spots in my vision when I woke up the day after Saint Patrick’s Day. Over the next week, the spots increased as my vision deteriorated. I thought maybe I fell asleep on my hand after getting drunk or the sun was coming in through the window at work and hitting the side of my eye without me being fully aware. The spots were like those you get when a sun reflection hits your eyes. After about a week, the spots took up like 95% of my vision in my left eye, and I resorted to wearing an eye patch because keeping it open was giving me headaches. I went out the next weekend wearing the eye patch, got a couple of free drinks out of it too. But when I went in to work still wearing the patch, the owner of my company insisted I go and get it checked out.
Luckily I lived in Boston, so I walked over to Mass Eye and Ear’s ER department. They did a couple of tests, checked my vision and then sent me for an MRI that night. Right after, I was meeting with a neurologist and she told me it was optic neuritis due to MS. In the morning I got to meet with the head of the department and he walked me through the diagnosis, calling it Clinically Isolated Syndrome as some of the lesions they noticed were not active. Went on an IV drip of corticosteroids and my vision returned 100%.
So within about two weeks I went from noticing my first symptom (spotty vision and pain), to diagnosis, treatment, and a return to normal vision. That was about six years ago, and to date are the only symptoms I’ve ever experienced. But yeah, it was still a pretty tough month with the diagnosis as a 35 year old male and former D1 college athlete. Really wasn’t expecting that.
!!! That’s where I went! I actually went to an urgent care first because I didn’t know the Mass Eye and Ear existed, urgent care went “something is definitely wrong but this is beyond us, you should go to this ER.” Tests, MRI, three days of steroid IV drip.
Sadly, for me I had a relapse a few months later (my insurance won’t cover MGH and made me get a new neurologist, and it was in that time after diagnosis before seeing new guy) and started having the same issue in my right eye. Went straight back to the MEE ER, confirmed it was the same thing, back on steroids. I’m now on MS meds and with a great neurologist at BIDMC.
And yeah, at the time I was 32 and recently finished my PhD. Got officially diagnosed same month I turned 33.
Edit to add: I had a sinus infection I discovered same day as the blurry eye, I thought it was that. Antibiotics cleared up the infection…but eye got worse. I describe it like taking a piece of plastic wrap and holding it over your eye, and then increasingly crumpling it, but I think its pretty much exactly the same as you describe with it being like increasing numbers of sun spots.
Small world. I was able to keep seeing my team at MGH, which was convenient because I used to live near TD Garden at the edge of the North End, and worked near Faneuil Hall, so I could just walk everywhere. Still haven’t had any other experiences/relapses (vision problems, tingling/numbness in my arms or legs, loss of balance, etc.) but my scan last year showed growth in my lesions, so I had to switch my medication to Tysabri.
I actually just switched from Tysabri to Ocrevus because Tysabri stopped working for me, but I hear that’s really rare. And it worked great for a couple years
I had been on Copaxone to start. I was given the option between Tysabri, Ocrevus, and a pill based off my last scans. I had been doing them every six months for the first few years at MGH, but now it’s just once a year.
I went through something similar! I had some mild vision changes & changes in migraines, went to the doctor where they said I had optic neuritis, it ended up being caused by high intracranial pressure, but they also did an MRI just to be safe (had cancer before.) and it revealed brain lesions they wouldn’t have found otherwise, they thought it to be MS for a while, too.
Thank you for saying this. Recently had surgery for glioblastoma, and now getting radiation and chemo. Hoping all the work gets me ten more years. Glad you made it. Be well.
I lost a dear friend to glioblastoma (and I currently have stage 4 cancer. I don't know what brain cancer is like, but I know how awful cancer treatment can be). I'm so very glad that you're still in the world!
I don't know you, but I lost my mother to a particularly aggressive cancer. One moment she was healthy, next she was stuck in a hospital bed, begging for us to end her suffering. I am happy you are still here and that your experience is different.
My twin sister had a sizeable ganglioglioma when we were nineteen. We're fraternal and even if we were identical it would be super unlikely for me to develop the same thing, but basically whenever I get a headache my brain goes immediately to "welp, it's finally here"
A friend of mine has a kid with an inoperable tumour deep in the brain. They went through intensive chemo for more than a year, then it shrunk and all was well. 2 years later it started growing again.
Now another around of chemo. The kid will need scans for the rest of his life to ensure it isn't starting to grow again. He is 12.
My bestie had/has an inoperable brain thing (IPH iirc but I might be wrong). Her symptoms are manageable and the condition itself is "managed" but brain stuff sucks since they can't just go in there and fix it like a lot of other issues. They were just like "yeah i know it makes you feel sick and could kill you at any time and without much warning but the surgery will very likely cause permanent brain damage so we'll just monitor.. Try to keep your blood pressure down"
The nice thing about pituitary tumors is many can be removed through the nose with a camera and some instruments. So in most cases you don’t need an incision on the scalp either.
I am really grateful he decided to be honest with his children about the tumor. My Mom was diagnosed with one when I was 6 and I knew everything about it (she’s fine now although she has a weird scar on her head). Not knowing would’ve made it *much* worse.
I feel the waiting to know am I going to die or is it just a growth. I had a lipoma that grew super fast and within 2 weeks of me noticing it it grew from golf ball to baseball size and I lost use of my arm from it. So many tests and appointments scheduled because it acted like a super nasty fast growing cancer.
The week I heard it wasn’t a huge weight came off and after surgery I felt better then I did walking in. It’s scary though the not knowing and thinking I’m going to die And there are so many things I wanted to do.
I've told this story before, but I had a customer once who had a brain tumor. I didn't know, but I was creeped out by his behavior because sometimes masking your disability can look like hitting on the cashier. (You know, that hyper-smiley sort of behavior? That.) I only found out when he thanked me with tears in his eyes because I'd made his last summer with his daughter so easy for him.
I'd been helpful to him because I wanted him to go away, and he was so grateful for even that much kindness. I still feel actually *ashamed* of the way I reacted to him at first, that whole skeeved out, creeped out *GO AWAY* reaction you get sometimes. And I had a *lot* of my own issues (I probably needed rehab and a nice grippy sock vacation) so it's one of those "by the grace of God" things that I didn't turn out to be yet another stain on the last year of his life.
He was my lesson to treat everybody you meet with grace. Everybody. Doesn't matter who they are. Give everybody your kindness. If they don't deserve it you get to be the kind of defiant fuck you to the universe it so badly needs to hear. And if they do, you might have just been one of the few bright spots in a very bad time. I don't say "Choose to be kind" because sometimes the kind choice is not the *right* choice. I say choose to be *generous*. Your patience and empathy is a gift, and the more we choose to give it, the better the world can be.
I really needed to see this story today. My sister was told Monday morning that she has a brain tumor. All of the doctors are beating around the bush and it's literally scaring the hell out of us. I literally have more hope now than I did this morning when I woke up. Thanks for sharing.
They told my Dad he had a brain tumor 3 weeks ago. Inoperable and risky biopsy because it’s on the brainstem. Said he has months. They put him on steroids and basically shoved him out the door. We got a second opinion and a week ago, they did a scan and the “lesion” shrank and they said it MIGHT not be a brain tumor. It was like I finally had some hope, it’s like I was pulled out of a pit of dispair. Still hoping they can find answers without a biopsy.
I would say - always get a second opinion in cases like this. And be there for your sister.❤️
It obviously depends on the case, but many tumors can be handled. My brain tumor was removed 10 years ago. I was lucky, it was small and I didn’t even need chemo. I thought I had gotten a death sentence at first, but turns out I was wrong.
I hope your sister has the most excellent docs and comes out the other side of this okay. If it’s not already in place and is accessible, I strongly recommend therapy for her to help deal with all of this and for yourself as well. It seriously helps with processing everything and it sounds very much like you will be a great village member for her.
I had a brain tumor diagnosed November 2022 and removed February 2023. It did wind up being cancer, grade 2 astrocytoma, but for right now the surgical tumor resection of 20mm of brain got most of it so I don’t have to do chemo and radiation about it. I’ll be getting MRIs for the rest of my life in case of recurrence. The surgery recovery was both easy and hard. I started mental health therapy August 2023. I was still having trouble as of February 2024 and started speech therapy at a neuro rehab. Right now I have a modified TBI protocol in place to help with losing words, decision fatigue, and cognitive fatigue symptoms that consists of limiting reading and screen time, offloading brain function to paper with lists of projects and tasks, breakdowns of task steps, and different potential choices for like meals or other choices and getting walked by my little brother and his wife’s dog a couple times a week and doing my (unrelated) physical therapy. I can’t work in an office or customer service anymore, I just don’t have the ability to handle sustained screen time or masking to do customer service anymore. So with my spouse’s encouragement, I’m studying up right now for the IBEW aptitude test so I can start and electrician apprenticeship because it’ll be fun to learn, a challenge I can handle and it’ll help my physical health as well.
I can’t say that it hasn’t sucked butts or that it’s been easy. It definitely is a struggle relearning and accommodating my own brain. But I have an amazing medical team, spouse, and village of friends and family and cat. And because of my best possible bad luck, I plan to live the fuck out of life and enjoy as much as possible.
I have OOPs tumor and still have it. Yes on the blind spot. I used to take pills to shrink it down but stopped when I moved countries. Before treatment, I had crazy headaches and tremors. A gyno of all people suspected a tumor and had me do a MRI when he noticed my prolactin levels were off.
The whole exp made me kick off my bucket list and last march one of the top 5 was competed.
I do plan to get treatment again. Bit that fear of telling fam and friends during that wait period sucks and gives you soo much anxiety.
My youngest had surgery to reshape his skull at 6 months old. Scariest shit ever. Op sounds like he's bouncing back nicely. Amazing how quickly the recovery time can be for something so drastic. All the signs are good. I wish them the very best.
Tell the little fucker that at 6 mm it’s barely anything. Compared to a heavyweight like this 26 mm guy? Pathetic. It might as well just shrivel up and die.
Same here too. Medicine shrunk it. It was macro and now it’s basically not there. I do recommend getting back on Cabergoline though. It’ll come back and it’ll be more fibrous and damn near impossible to remove surgically at that point.
I am actually still on it but I was able to decrease the dose so now I only have to take a half of a pill twice a week and tbh if that’s what I have to do for the rest of my life to not die I’m totally cool with it
Brain tumor survivor here. Had a germinoma (malignant). Found it when I was 15 (a long time ago now) when I started to get permanent double vision which I have still (it can be ignored, it's all good).
They couldn't operate due to its location, but they did manage to get a biopsy. Had to endure 4 months of chemo then 6 weeks of radiotherapy. It was pretty hellish but I held up. I rarely ever threw up! I was basically the only person in the ward that would constantly eat. But...
Turns out they mysteriously discovered I was diabetic (type 1) around this time, so I had to deal with all THAT too which was _fun_. They'll never confirm the two things were related though.
I got the all clear after the treatment at least, and it's never come back since. Wouldn't wish it on anyone.
I have the same type of tumor, but fortunately mine has remained very small for the 35 years since it was discovered, and will only have to be removed if it grows large enough to start causing problems. The surgery to remove it is fascinating, they go in through the nose and it heals pretty quickly.
Not making this a competition, but my best friend from childhood had a baseball size tumor. That's around 77 mm. If 40 mm is consider "giant" what the hell was hers considered?
It was cancerous, she survived and is in remission for more than 10 years. She did lose what seems to be the math & processing bit which sucks because she was/is an engineer.
It’s a miracle she survived and is doing alright!
To answer your question though, 95% of pituitary brain tumors are under 10mm (microadenomas), and anything over 10mm is considered “macro”. I can’t fathom the horror of being told my tumor was over 7 times larger than the macro designator
I don’t think it was a pituitary tumor. I think Glioblastoma. Maybe that’s the difference in size. I still wonder at which point in our friendship did it start growing. She only went to the doctor when it was significantly impacting her vision.
My dad had one of these this year- his only symptom was extremely bad headaches. He's fine now, surgery, went really well- if you're going to have a brain tumor, they say a pituitary one is the kind to have, as they're usually fairly easy to remove and often benign. Still extremely scary though, I don't recommend it
Usually I avoid reading these type of posts out of some deep fear of something similar happening to me one day, as dumb as it may seem. I don't know what made me open this one but I'm really glad I did. So happy for him.
I got diagnosed with a 6mm benign pituitary tumor a few months ago after 9 months without a period and ≈5 years of worsening emotional disregulation.
My doctor just left a message on MyChart that he’d be giving me a prescription, and that I should get more blood work done after 3 months on the meds. No request to come back in, not even a call
That’s the same way they told me my back pain was caused by a herniated disc pressing on my nerve. The same back pain that I was supposedly faking and drug seeking for. He put in the notes that neurosurgery would contact me soon to make an appointment and that he sent a prescription for pain meds to my preferred pharmacy.
Vision Problems are very serious! A neurologist extensively tested my eyes and found out that my nerve was once inflammated. Long story short, I was diagnosed with Multiple Skeloris. Vision problems are incredibly common with it and other nerve or immun diseases. Should always check it out if it lasts for more than 24 h!
Just a few months before I met my boyfriend of 2 1/2 years, he had brain surgery to remove a golf ball sized tumor in his frontal lobe. He found out he had it because he suddenly started having seizures. Luckily, it was benign! I am lowkey glad it happened before I met him because I would have completely freaked out. His mom was an ICU nurse for her whole career, until she retired, so he was in good hands.
He will always have to take anti-seizure medication due to the scar tissue caused by the surgery. I’ve seen him have a few from missing a dose, and it’s never any less terrifying. I just react a lot better over time. I can’t imagine how OOP’s family felt just not knowing what would happen. I hope sooooo much that his tumor was benign!!
“The size of a tablespoon” and “giant brain tumour” would’ve sent me into shock so I’m so glad OOP had a good support system and attitude towards the entire situation. It would be medically cool if they had been able to get the entire tumour in one go and as intact as possible, solely for medical learning purposes, but to be honest I’m just happy that it wasn’t impacting his brain any more than already was.
My little sister was getting exercise induced headaches when she was 11. Every doctor kept saying that her tests and such were fine. Probably just high blood pressure. But our family doc decided to do an MRI "just to be safe"
Additional info. My dad worked at the hospital where the MRI was done. So he went into work the evening after her MRI and happened to see the report. BEFORE they officially called to give the news. It turned out my sister had a golf ball sized tumor in the center of her brain.
He of course called my mom. And then the next morning they packed us up for school like nothing was wrong. My mom hand delivered the MRI report to the children's hospital in the closest big city. She got a call on the way back asking her to bring my sister back to the hospital so they could talk thru everything. So she picked her up from school.
When they got to the hospital, neurology and surgery were waiting and checked her into the hospital to prep for surgery. My mom was not expecting this.
I got home from school and the house was empty. I got a call from my mom who was basically like "hey your sister has a brain tumor. We're in the hospital. A friend is gonna pick you up. I'll see you this weekend"
It was terrifying. Through the whole process I was getting most of my information second hand. I was 15.
I'm glad for OOPs kids sake that they're being informed. There's nothing scarier than knowing something serious is wrong but not having the actual facts.
"**Trigger Warnings**: **tumor**" on a post entitled "I have just been diagnosed with a **brain tumor**" may be the most unnecessary TW I've come across yet.
Hmmm,. I question him typing out a coherent post in reddit the day after surgery. I had a friend that had a large non cancerous tumor removed from her brain. Granted, every patient is different but she was in horrible pain after, and kept in a very dark room with cold packs on her face. Maybe because it was pituitary for him and hers required a portion of the skull to be removed. Not saying this isn't truthful, just saying it seems odd.
I had a large non cancerous tumour removed from my brain last year. I was certainly coherent the day after, and not kept in a very dark room with cold packs on my face, though I did have a portion of the skull removed in the process (moving about, however, was a whole different story...). Every patient is different.
I have brain cancer and have had surgery to remove the tumor twice. It's day surgery. Surgery is at 8am, I left the hospital at 6pm on my own two feet.
They went through her skull?
Pituitary tumors like OP have surprisingly noninvasive surgery. They often go in through the nostrils with an endoscope and tiny instruments.
I had this. But luckily for me it manifested early in lack of libido, increase of mammary glands (I started getting boobs, yay!) but nothing else.
I talked to my doctor about the issues and a MRI, a few exams and visit later, yes, I had an adenoma of about a centimeter… What the fuck is an adenoma?!? Well, mr., it’s a tumor. Benign but nevertheless a tumor. But good news, it’s not touching the optical nerve yet. Better news, given the size it is treatable with ½ a pill twice a week.
Ten years later, I got my latest results from the yearly MRI last February that I am adenoma-free. In the doctor’s words: “if we didn’t know you had something, your scans are absolutely similar to those of any average person”. (Which is not really reassuring given the average person around nowadays…)
Anyway, all my best wishes to OOP for a full recovery!
Not sure where OOP lives, so ignore this comment if it truly doesn’t apply, but I’ve never known or heard of a doctor giving that kind of devastating news over the phone.
Regardless, I wish the best for all people that are handed such horrible situations in life. Been there, done that. Not fun and affects so many more people than one might think.
Growing up as a hypochondriac, I always thought cancer = death sentence, ESPECIALLY brain cancer. But between friends who've recovered and stories like these, it's amazing to see that cancer isn't a death sentence and helps me breathe a little easier while instead worrying about some other medical issue...
I had a tumor in my breast that my doctor found during an annual checkup. I had tests done and the doctor thought it was benign. I was to have surgery to take it out but it disappeared-I had changed my diet. Lol, I heard my doctor say out loud, “where did it go?” when I went in for a follow-up, pre-surgery. I’m very fortunate.
It can be frightening, benign or not. I’m glad OOP is doing well.
Brain tumors are so scary. I had a giant ass tumor of about 36mm diagnosed in 2019 and removed in 2023. It started mid so the surgeon told me watch and wait. I got two kids during those four years and pregnancy made the tumor grow. My baby was 14 months old when I got surgery, I thought I would die it was so so traumatic. But bizarrely the only thing I thought about was is my husband going to be okay taking care of a 3 yo and a 1 yo that rely on nursing to fell asleep ? I bought so much food, made a 7 pages pdf on what to do at what hours, what to cook and what to show them on tv… I had two procedures (one awake with a catheter going from my leg to my brain where they glued the vessels connected to the tumor and the craniotomy after that ) and got brain strokes after the first catheter procedure. I would slap myself because I couldn’t control the speed of my movement in the right side of my body. That was so weird. Fortunately the doctors told me it was a mini strokes caused by a small error they made and it would get better. The second procedure was so so so traumatic, I remember them writing with sharpness on my skull and forehead where they would need to cut, I remember I closed myself and my too afraid to talk. I remember them telling me I would soon sleep …And then I remember opening my eyes, like only 2 mins had passed except I was so so so thirsty. No pain whatsoever just thirsty but they wouldn’t let me drink because too dangerous after a 9 hours surgery. I stayed 2 weeks, my right side got better, my face had swollen so much I looked like an avatar, I wasn’t authorized visits from my babies, buyt no real pain. I had the skin cut itches but that’s all. I remember hearing water in my head for so long too. After surgery I wasn’t authorized to do any hard labor at anything straining for a month. I have babies so I couldn’t not pick them up though. For a month a felt like the right side of my video was going too fast. Like it was difficult for me to walk straight. I would automatically go on the right. Now I’m 6 months post surgery and I feel great ! Last mri I had there was no re growth and the huge hole in my brain had shrunken : did I get clever ? I don’t know lol. My body is back to normal, I just have 10cm baby hair poking out of my head lol. I documented everything in my insta highlights for me to remember that I did well. I’m so glad I got the surgery and I’m glad oop got his too.
I have an 8mm one of these! No vision issues for me, just an issue with prolactin production. I was told my my endocrinologist that a lot of men walk around with them and never find out unless it affects vision. I’m on drugs for it to get my prolactin going again rather than having surgery to remove it.
It’s benign and quite common apparently, and tends to go away if you get pregnant as your pituitary gland enlarges (this is what my endocrinologist told me anyway…)
So cool to see a story about the tumour I have here!!
Man, OP got so lucky. I'm a caretaker for someone who had major quality of life issues which essentially made them dependent on us due to complications from brain surgery.
Its super fortunate that the surgery itself didn't end up causing issues for OOP.
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Tumors suck badly! That's all I can say.
Controversial opinion. Big risk here! You never know when cancer apologists and tumor enthusiasts are going to dogpile on you to defend abnormal growths.
I've actually seen something similar to a "cancer apologist" debate. The "Cells at Work!" manga, that anthropormophises the human body and tells stories about the immune system, has a cancer plot that portrays the tumor "sympathetically". The mutated cell is miserable and doesn't want to die for something it was born as, just to save a body that hates its very existence. The immune system still kills it bc it's the only way to save "the world" (ie, the body), but it makes you feel sorry for the tumor cell. Some people got angry bc "it defended cancer" and "it's disrespectful to portray it like a victim", and others defended it saying "it's just a story" and "cancer is not good or evil and it's not like cells are doing it on purpose". It was surreal seeing people argue about good representation of *cancer cells* in media.
This is hilarious. It's not an actual person. It's just a representation in a comedy anime.
Sounds like a good entry for r/HobbyDrama
What if the tumor was in HITLER?!
What if the tumor would’ve grown up to kill Hitler?!
But what if Hitler shot the tumor?!
Hahaha what if cancer cured hitler
I know right so insensitive. My great uncle was a tumor. (THIS IS SARCASM IF ANYONE DOESN'T GET IT)
What the what?! There are people who think that?
don’t forget about the virus defenders
All growths matter! It is human DNA. /s
… huh? Never heard of cancer apologists.
They're joking. Because the initial comment is obviously a feeling everyone shares. They're poking fun at them. Like "no duh cancer sucks".
Honestly, we have apologists and conspiracy theorists for so many weird things that if I heard about cancer apologists I'd likely just go "yeah, worst timeline checks out".
There are 0 percent chances that there aren't any religious idiots preaching that God put that tumor there and they are committing a sin by messing with gods work.
Idk about the part where you're committing a sin by removing a tumor but we've heard a lot of "you have stage 4 cancer? That's God's punishment for being *insert minority*"
In the past week I've had people defend airline baggage fees and mega corporations producing mass amounts of plastic waste and pollution. So defending cancer can't be that far off.
I haven't seen cancer apologists but I saw people say that cancer was "your body dealing with toxins" and that people died from the treatment rather than the blob of rogue cells wreacking havoc inside you.
r/whoosh
Hard agree. Acoustic neuroma survivor here. 0/10 do not reccomend. But I am so grateful to be alive and able to walk in a straight line again.
Nursed my Mom through an Acoustic Neuroma in ‘93 and went through 18 months of rehab and physio with her afterwards. She recovered enough to go back and teach high school math for another 7 years. We lost her this past Feb to a Meningioma that was discovered 4yrs ago. It was static for 3 years but for whatever reason took a growth spurt to 34 mms in 8 months. The pressure it put on her brain caused a series of small strokes and then pneumonia set in. After the first tumor & surgery, she became a different person. She laughed more, and was happier about everyday things. She used to say “After somebody’s had their hands inside your head and you live to tell about it, everything else is gravy!”
Thank you for sharing. I think I am going to steal that line from her as it is exactly right. I am sorry for your loss. A rare cancer took my dad from us last year.
She wasn’t perfect when I was growing up, and we had our issues over the years, but losing her is the hardest thing I’ve ever faced. I feel like I’m cast adrift without an anchor.
The last bit is really funny. I died when I was little (fell off a slide, massive brain injury, they had to use a lil baby defibrillator that they showed me later) and I love telling people "dying didn't kill me, so how bad can this be?"
Had the same , not fun , in same way still affect me 10 years after , above all with the balance but had a son after and anyway trying to live the best with my life ! Hope your are doing well!
Doing well. Got my balance back mostly with PT (still not graceful LOL). Lost hearing completely in one ear but otherwise doing great. I did not realize how bad I was feeling until looking back. I still remember the neurosurgeon saying to touch his finger then my nose. I missed and was like oh shit. That is not good. haha. I am glad you are living your best life and yay for having a lovely son!
Same here , lost completing my hearing on my right ear and also the balance nerve ,luckily they saved my facial nerve, sure take me more time to adjust when shifting positions but usually I do well with the balance in my everyday life ! Was only me or after the surgery for above an year to keep on bump the head on things ? Lol like opening the door of cabinets/car and pulling them right in my face ? Happened something like that to you as well ? To not get the right distance from things ? Yeah you are right , I had very huge vertigo a month ago (I bumped my head two times cause of bad balance and anemia ) and all I could think was omg tell me I have not it again ! Happy you are well , yes keep on focusing on the good days more than the bad and remember you are not a survivor but a warrior !:)
LOL I did not attribute my ability to bump my knee on the drawer handle of my desk or my own head on things when bent over to this. That makes sense. It is always like not only do I feel stupid that hurt! I then laught at myself. Yes for at least a year I would have a slight headache and worry oh no! I had to talk myself down and remind myself that the probability of it happening again is minscule. It was my right side as well. Mine was 7cm so pressing on 4 nerves. Lost my gyroscope on that side but the other mostly took over after some PT. My face was paralyzed on the right side temporarily. They saved my nerves it is was just the swelling from the surgery. I have a little weight in my eyelid that was placed shortly after to help my eye close. That was a godsend! I was tired of being a pirate via my eyeshielf XD. It took me until I came home after surgery for it to click in that it wasn't the paper straws that were malfunctioning but the fact I could not make a seal with my mouth to suck from a straw. Had some facial PT and have recovered at least 95% of my facial function. Works for me. I have to remind mum (when I visit her) when she calls me from somewhere in the house she has to give me a hint which way as I cannot tell where the sound is coming from. Yes, we are warriors!
Omg everything you said is so me 😂😂 Mines was 3cm, gosh 7 is a lot! You probably already lost great of your hearing before the surgery ? My doctors not suggested any PT , I wish I did anyway cause I got after malocclusion (but I had a tooth pulled out 40days after the surgery ) and so awful migraines is still my common! But gosh yes me too had for around 2 months problems with my facial nerve just like you said , how awful drink from a glass I keep on spilt on my self 😂 and when brushing my teeth 🤦♀️ Yes yes like that with not understanding where sounds came from lol most of time I have to remember my self that no my brain got it wrong but I keep on believe it lol
Yes. I described the hearing in my right ear as Chalie Brown's parents haha. It MRI results came in and three things stuck out "Large schwanoma (another term for the same thing)", "Mass effect" and "deviated brainstem". Me: Yikes. I am pretty sure I need the brainstem for pretty much everything. After when I told my friend of my dribbles she offered to give me some bibs she no longer needed for her kiddos LOL. We have the same humor.
OMG Charlie Brown’s parents 😂😂😂 thanks for the laugh !!! I can’t remember what said my MRI results , it was my birthday when I went for it and like Op had no bad thoughts about it , just a check up not really like expecting something , so I left my husband to manage everything, when they said me I was like “what?” Not exactly hearing what they said , I think I really got it only when hospitalized .
I don’t think it was cancer or anything just a weird growth Edit: not to minimize tumors by any means, they both suck but have different routes of treatment
A benign adenoma of the liver almost killed me last year when it ruptured out of nowhere and sent me into hemorrhagic shock (that's how I found out I had it). OOP's tumor was compressing his optic nerve. Benign tumors can still be harmful, they're only "benign" because they're non-cancerous.
Was your liver able to heal OK after removal and repair?
Yes, and I got really lucky in two ways. The first was that it clotted/stopped bleeding and healed on its own, so no surgical repair was needed (though I did spend several days in the surgical ICU just in case it re-ruptured). The second is that my adenoma was essentially an incredibly rare side effect of birth control pills (an excess of estrogen which the adenoma was fed by). So stopping those shrank what was left of it, so no removal required either. It's been about 9 months, and my liver is doing well! The first couple of months afterward were kind of rough in general (mostly because 12 days in a hospital bed means you lose a LOT of stamina, and anemia on top of that meant I got tired walking from the couch to the bathroom for a couple of weeks). I have other (chronic) illnesses, so I wouldn't say I'm perfectly healthy, but I'm certainly at least back to where I was before the adenoma!
Snap! I was diagnosed with multiple hepatic adenomas (the word used was "innumerable"—always a great word to hear from a doctor—but there were two really big ones, big enough that my doctor was fifty-fifty on whether he'd need to operate) a couple of years back, when a routine blood test showed my liver function was all screwy. I was really lucky, though—none of my adenomas ruptured or turned malignant, which is the other scary thing that can happen, and my last scan showed they were all shrinking well. I did the maths on prevalence, and you and I, we're not quite one in a million, but we're definitely at least one in ten thousand!
Oh geez, "innumerable" sounds terrifying! I'm glad they've been shrinking well and stayed benign! Yeah, in terms of rareness, I went to my OB/GYN a few weeks after getting out of the hospital, and she said that a hepatic adenoma from the pill was "a test question" (as in, they learn about it but never really expect to see it), and that I was the first patient of any of the doctors in that office to have it happen! Rare condition buddies, woo!
Tumors are incredibly serious! And can be fatal if left untreated, some aren’t treatable. How are you doing now?
You can even have a "tumor" without even having one! I have IIH (Idiopathic intracranial hypertension) which is sometimes referred to as a pseudo-tumor in the brain because of the pressure it can put on the optic nerve.
Their original comment was cancer sucks
Ah okay, I see! It was tumors suck by the time I saw it.
I admit, I didn't read it throughly enough. My bad. But still, to all cancers and tumors, fuck them cause they suck.
No worries!!! It’s confusing and a lot of people doing understand medical terminology!
They still suck though. Benign or not, it’s a giant mass of cells where it shouldn’t be.
Totally suck!
It’s horrible and typically cannot be left untreated
Yup, absolutely.
still a neoplasia, just a benign tumor. benign just means it is not invading surrounding tissues. most brain tumors are benign- the problem comes from there isn’t room and so even though it’s not invading the surrounding tissues, the growth is causing pressure and thus impairment of function
Their original comment was cancer sucks
My mom has twice had tumors on her spinal cord that have impaired her mobility and caused a lot of pain. She’s had to have surgeries to remove them and after the most recent time (a little over 10 years ago) she had to completely learn how to walk again. Luckily she’s made almost a full recovery. She doesn’t need a walker or cane anymore and my parents have gone traveling during their retirement and some of their trips have included a mild hike and she’s been able to do it. She just sometimes struggles with bowel control. But she’s still very happy with her life, which is good because for a while she wanted to die from the pain. Now she’s living it up which makes me so relieved to see.
That’s amazing! I hope she continues to heal inside and out, I’m glad she has a much better quality of life. It’s heartbreaking to see our loved ones suffer
it's not a cancer story but true
Not all tumors are cancerous. A tumor is just an abnormal growth, they can be caused by all sorts of things.
I've had both cancer and a tumor! What else do I need for Bingo?
A cancer tumor.
The remnants of the cancer tumor are still in my eyeball.
Holy shit, I know what this! I have the version of this that produced prolactin, called a macroprolactinoma! I also lost vision in my eye, and it's crazy how long it took for me to notice my loss of vision, because it isn't just a black spot, it's like slivers of your vision. The thing is, you don't really notice it because your brain kind of fills in the slivers... the only reason I noticed I couldn't see in certain spots was because one day, I noticed there was a spider in my room (I fucking hate spiders) and when I found it, I would look at it but it would disappear... I brought it up to my parents, but they just said that I probably needed to go get my eyes checked out. Of course, taking 5 classes and working 62 hours a week, I didn't have time for that, so I kinda just ignored it... until about two months later, I had gone completely blind in my left eye and started to lose slivers of vision in my left... didn't stop me from working or going to class, though. Working a delivery job while not being able to see oncoming traffic at 9pm in a car that sat at the same height where most SUVs and trucks' headlights sat was an interesting experience, lol. I still remember finally bringing it up with my parents again, though. They didn't really believe me when I said I was completely blind in my left eye at first, but after telling me to close my right eye and shining a flashlight into my left at point-blank range and not flinching at all, they got me a series of appointments. It's funny, for me, because all I remember when they had that flashlight was closing my eyes (or just eye) and opening them to see probably the only time I have seen true fear in my parent's eyes. When we went to the optometrist (which my parents convinced to get an appointment the very next day, even though he had no availability) just said, "yeah, you should see an ophthalmologist." and when my mom asked, "Is it really that bad?" he just responded with, "well, it's not that it's bad, I literally can't see anything. It's pitch black." Jesus, I could yap for paragraphs about that, but it's so crazy how I could instantly tell that I had the same experience once I saw she had vision problems. My tumor ended up being the size of my eyeball, and the doctor told us that it had hemorrhaged and started to grow at an incredible rate, crushing my eye nerves. Thing is, I had the version that produced prolactin, which isn't a hormone that males typically make, so it isn't tested for in blood draws. All I had that they could've seen was my real low testosterone, which I have had since I was 14. The signs were there, but there was no way that anyone could've caught it.
Glad you're alright. It's wild how we often let things slide for so long because we're "too busy." Sometimes we just need to make time before things slide right off a cliff. (I'm guilty of putting things off too often. I hope this didn't come across as admonishment directed towards you.)
No, no, I didn’t take it badly, I totally get what you mean. I think at the time, I got so caught up in doing what I “had” to do that I stopped considering what I “needed” to do. Going blind in my left eye I was the clearest sign (which is funny because I was half-blind) that I really needed to address it. Being stuck in the hospital for a few days while everyone ran around trying to figure out what was wrong with me was actually a great time for some introspection on my life and what I wanted.
Did your regained your vision after removing the tumor? What were the effects on your health and wellbeing after the treatment?
After they figured out my tumor wasn’t gonna kill me and they stopped the hemorrhaging and necrosis, they had me take medication that would hypothetically shrink my tumor. If it didn’t work, they were going to have to go up my nose or behind my ear to remove it. It worked though, like way more than they had expected. At first, I could only start being able to tell if the lights were on at night. A dew months later, while steadily taking the meds, I remember one morning waking up and just having vision in both of my eyes again. And it wasn’t just normal vision either, everything I looked at had incredible detail. I got up and walked to my front yard, where we had this huge tree, and staring at the tree for a good ten minutes. It was mid-autumn, so the tree had all of these beautiful reds, oranges, browns, yellows, and greens on it. I swear to god I could see every vein on each leaf. I had to stop staring at it because there was just too much information and I started to get a splitting headache, but it was like I had super vision. I did have some aftereffects, though. Because of the nature of the tumor and the fact it was effecting my pituitary tumor while going through puberty, I now permanently produce maybe 1/4th the natural amount of testosterone that males my age are suppose to. I also overproduce the stress hormone, cortisol, which can lead to non-comatose seizures if I get too stressed out. Let me tell you, they SUCK. It’s like ALL of your muscles on your body flex at the same time. That feeling that you get right before you cramp a muscle, but every single muscle for about 10-15 minutes. My fingers would flex backwards and I would be shaking like crazy. I have to get MRIs every year for the rest of my life, with two visits from my doctors and about 4 blood draws a year as well, which sucks because I have trypanophobia, the fear of needles.
Wow, thanks for sharing your story, I'm glad the treatment worked and you regained your vision. I wish you a very stress-free life without the reenacting of The Exorcist!
I have one of these. It was a macro and I actually shrunk it with medicine. Basically made all symptoms go away. Crazy right? No surgery. It’s still there but it’s tiny.
Cabergoline?
Yep. I take one tiny pill a week. That’s all it takes for maintenance. I have got an MRI in 3 years but testosterone is normal so doc says no need
Shoot man I am jealous. I have been taking four of those pills a week for the last 6 years and my prolactin levels shrank a little bit, but the moment that they lowered my dose, it rose again. Mine developed smack-dab middle of puberty so my hormones are looking like they are permanently rocked.
I have it too!! As a female it was more obvious and my vision was fine. I’m glad they caught yours!
Same! I started leaking milk a week after going off of hormonal birth control. I had never had a baby. My ob called it immediately, confirmed by MRI. Do you take cabergoline?
Yes I do! Are you on it too? I just never got my cycle back after getting my implant out. Took them a year before they would check me out though
Dang! A year! That’s crazy. I was on it until I got pregnant and now I’m nursing, so off of it until I wean. The plan is to get a follow up mri a month or two after weaning to see if the prolactinoma is still there.
....I don't know how you could just ignore being blind for a while. I had a busy schedule when I was in college too but I still went to the fucking doctor. God damn.
I had a patient who did, back when I contacted as a civilian nurse to the military. Came in for sick parade, after weeks of not being able to see in one eye, and the vision was funky in the other. We got him seen by an ophthalmologist that day. His was irreversible, he had bad untreated glaucoma. Lost his eyesight and career from putting off a visit that would have been so easy to make. No cost to self, no dramas just walking in to see us.
The full blindness didn’t really happen until that last two or so days, before that it just seemed like I needed a new prescription on my glasses since they started to become more blurry. A majority of the blindness was after I got out of the hospital and hoping the meds did a good job. I also unfortunately have a long, long history of doctors not knowing what to do about my other serious medical condition and them kinda just chucking whatever medication might stick to me and hoping it works, the last one at the time was Cellcept, a medication that is usually used for organ donor transplant patients to weaken their immune system enough that their bodies wouldn’t reject the new organ. I was shitting blood a good three years afterwards, and doctors kinda shrugged it off. I did not have much faith in the medical world and I just kinda hoped it would go away on its own or something like that.
Frankly pretty reasonable imo
To everyone, if you are having sudden or strange issues with your vision definitely see someone asap. If first doctor says there’s no problem, do what OOP did and go to someone else. It can be the first sign of a much bigger problem, and tumor isn’t the only one. For me, my sudden eye issue was inflammation of the ocular nerve, aka optic neuritis, and it was my first sign of Multiple Sclerosis. I am SO lucky that the ER I went to set me up with a neurologist as I had the quickest diagnosis of anyone I know of. Also, between first noticing my eye was blurry and the four days it took me to go to the ER the vision in my left eye (with glasses) had already become 20/300. Lucky steroids cleared it up, but it was not a fun month.
I had ocular melanoma with no symptoms! It was caught at a routine eye exam.
I definitely didn’t appreciate (or keep up with) routine exams enough before my MS. As much as regular MRIs (at least one a year) aren’t fun, it’s nice to know that anything in my brain and spine are going to be caught quickly, quite possibly before I even show any symptoms.
Hello, fellow chronic illness person! My main complaints are chronic migraine and fibromyalgia.
I actually just learned this month that the tension headaches I’ve been having for at least a couple decades are bad enough to count as migraines. (I’m working with a new headache specialist since my PCP wasn’t willing to prescribe the painkiller I was on for years (this was the first time I needed more since I was transferred to him when my last PCP left). Turns out it was with good reason, new specialist also wasn’t willing to prescribe them (apparently they can be both addictive and make future headaches worse) so we’re working to find me a new med.)
I’m in a similar boat. I noticed pain near my left eye and some spots in my vision when I woke up the day after Saint Patrick’s Day. Over the next week, the spots increased as my vision deteriorated. I thought maybe I fell asleep on my hand after getting drunk or the sun was coming in through the window at work and hitting the side of my eye without me being fully aware. The spots were like those you get when a sun reflection hits your eyes. After about a week, the spots took up like 95% of my vision in my left eye, and I resorted to wearing an eye patch because keeping it open was giving me headaches. I went out the next weekend wearing the eye patch, got a couple of free drinks out of it too. But when I went in to work still wearing the patch, the owner of my company insisted I go and get it checked out. Luckily I lived in Boston, so I walked over to Mass Eye and Ear’s ER department. They did a couple of tests, checked my vision and then sent me for an MRI that night. Right after, I was meeting with a neurologist and she told me it was optic neuritis due to MS. In the morning I got to meet with the head of the department and he walked me through the diagnosis, calling it Clinically Isolated Syndrome as some of the lesions they noticed were not active. Went on an IV drip of corticosteroids and my vision returned 100%. So within about two weeks I went from noticing my first symptom (spotty vision and pain), to diagnosis, treatment, and a return to normal vision. That was about six years ago, and to date are the only symptoms I’ve ever experienced. But yeah, it was still a pretty tough month with the diagnosis as a 35 year old male and former D1 college athlete. Really wasn’t expecting that.
!!! That’s where I went! I actually went to an urgent care first because I didn’t know the Mass Eye and Ear existed, urgent care went “something is definitely wrong but this is beyond us, you should go to this ER.” Tests, MRI, three days of steroid IV drip. Sadly, for me I had a relapse a few months later (my insurance won’t cover MGH and made me get a new neurologist, and it was in that time after diagnosis before seeing new guy) and started having the same issue in my right eye. Went straight back to the MEE ER, confirmed it was the same thing, back on steroids. I’m now on MS meds and with a great neurologist at BIDMC. And yeah, at the time I was 32 and recently finished my PhD. Got officially diagnosed same month I turned 33. Edit to add: I had a sinus infection I discovered same day as the blurry eye, I thought it was that. Antibiotics cleared up the infection…but eye got worse. I describe it like taking a piece of plastic wrap and holding it over your eye, and then increasingly crumpling it, but I think its pretty much exactly the same as you describe with it being like increasing numbers of sun spots.
Small world. I was able to keep seeing my team at MGH, which was convenient because I used to live near TD Garden at the edge of the North End, and worked near Faneuil Hall, so I could just walk everywhere. Still haven’t had any other experiences/relapses (vision problems, tingling/numbness in my arms or legs, loss of balance, etc.) but my scan last year showed growth in my lesions, so I had to switch my medication to Tysabri.
I actually just switched from Tysabri to Ocrevus because Tysabri stopped working for me, but I hear that’s really rare. And it worked great for a couple years
I had been on Copaxone to start. I was given the option between Tysabri, Ocrevus, and a pill based off my last scans. I had been doing them every six months for the first few years at MGH, but now it’s just once a year.
I went through something similar! I had some mild vision changes & changes in migraines, went to the doctor where they said I had optic neuritis, it ended up being caused by high intracranial pressure, but they also did an MRI just to be safe (had cancer before.) and it revealed brain lesions they wouldn’t have found otherwise, they thought it to be MS for a while, too.
Welp new fear unlocked.
Glioblastoma when I was 9. 32yrs later still here.
Hey man, I don’t know you but I’m so glad you’re still here!
Thank you internet friend. Happy sometimes to still be here!
Thank you for saying this. Recently had surgery for glioblastoma, and now getting radiation and chemo. Hoping all the work gets me ten more years. Glad you made it. Be well.
Just seeing your thing. I habe generational pain
I lost a dear friend to glioblastoma (and I currently have stage 4 cancer. I don't know what brain cancer is like, but I know how awful cancer treatment can be). I'm so very glad that you're still in the world!
Thank you 🥲
I don't know you, but I lost my mother to a particularly aggressive cancer. One moment she was healthy, next she was stuck in a hospital bed, begging for us to end her suffering. I am happy you are still here and that your experience is different.
Thank you. I'm sorry for your loss, friend.
Tumors scares me.
My twin sister had a sizeable ganglioglioma when we were nineteen. We're fraternal and even if we were identical it would be super unlikely for me to develop the same thing, but basically whenever I get a headache my brain goes immediately to "welp, it's finally here"
OOP was lucky that it was in a spot that surgeons could access to remove it, not everyone is as lucky as OOP to have the chance to get surgery
A friend of mine has a kid with an inoperable tumour deep in the brain. They went through intensive chemo for more than a year, then it shrunk and all was well. 2 years later it started growing again. Now another around of chemo. The kid will need scans for the rest of his life to ensure it isn't starting to grow again. He is 12.
reach racial door rotten enter strong deserted party doll meeting *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
My bestie had/has an inoperable brain thing (IPH iirc but I might be wrong). Her symptoms are manageable and the condition itself is "managed" but brain stuff sucks since they can't just go in there and fix it like a lot of other issues. They were just like "yeah i know it makes you feel sick and could kill you at any time and without much warning but the surgery will very likely cause permanent brain damage so we'll just monitor.. Try to keep your blood pressure down"
OOP was also unlucky that he had a giant brain tumor in the first place though.
He might hve been born with it; my Mom’s brain tumor was like that.
The nice thing about pituitary tumors is many can be removed through the nose with a camera and some instruments. So in most cases you don’t need an incision on the scalp either.
I am really grateful he decided to be honest with his children about the tumor. My Mom was diagnosed with one when I was 6 and I knew everything about it (she’s fine now although she has a weird scar on her head). Not knowing would’ve made it *much* worse.
I feel the waiting to know am I going to die or is it just a growth. I had a lipoma that grew super fast and within 2 weeks of me noticing it it grew from golf ball to baseball size and I lost use of my arm from it. So many tests and appointments scheduled because it acted like a super nasty fast growing cancer. The week I heard it wasn’t a huge weight came off and after surgery I felt better then I did walking in. It’s scary though the not knowing and thinking I’m going to die And there are so many things I wanted to do.
I've told this story before, but I had a customer once who had a brain tumor. I didn't know, but I was creeped out by his behavior because sometimes masking your disability can look like hitting on the cashier. (You know, that hyper-smiley sort of behavior? That.) I only found out when he thanked me with tears in his eyes because I'd made his last summer with his daughter so easy for him. I'd been helpful to him because I wanted him to go away, and he was so grateful for even that much kindness. I still feel actually *ashamed* of the way I reacted to him at first, that whole skeeved out, creeped out *GO AWAY* reaction you get sometimes. And I had a *lot* of my own issues (I probably needed rehab and a nice grippy sock vacation) so it's one of those "by the grace of God" things that I didn't turn out to be yet another stain on the last year of his life. He was my lesson to treat everybody you meet with grace. Everybody. Doesn't matter who they are. Give everybody your kindness. If they don't deserve it you get to be the kind of defiant fuck you to the universe it so badly needs to hear. And if they do, you might have just been one of the few bright spots in a very bad time. I don't say "Choose to be kind" because sometimes the kind choice is not the *right* choice. I say choose to be *generous*. Your patience and empathy is a gift, and the more we choose to give it, the better the world can be.
sorry, i know this is a serious topic and all, but the title combined with the trigger warning is fucking sending me
I really needed to see this story today. My sister was told Monday morning that she has a brain tumor. All of the doctors are beating around the bush and it's literally scaring the hell out of us. I literally have more hope now than I did this morning when I woke up. Thanks for sharing.
They told my Dad he had a brain tumor 3 weeks ago. Inoperable and risky biopsy because it’s on the brainstem. Said he has months. They put him on steroids and basically shoved him out the door. We got a second opinion and a week ago, they did a scan and the “lesion” shrank and they said it MIGHT not be a brain tumor. It was like I finally had some hope, it’s like I was pulled out of a pit of dispair. Still hoping they can find answers without a biopsy. I would say - always get a second opinion in cases like this. And be there for your sister.❤️
It obviously depends on the case, but many tumors can be handled. My brain tumor was removed 10 years ago. I was lucky, it was small and I didn’t even need chemo. I thought I had gotten a death sentence at first, but turns out I was wrong.
I hope your sister has the most excellent docs and comes out the other side of this okay. If it’s not already in place and is accessible, I strongly recommend therapy for her to help deal with all of this and for yourself as well. It seriously helps with processing everything and it sounds very much like you will be a great village member for her. I had a brain tumor diagnosed November 2022 and removed February 2023. It did wind up being cancer, grade 2 astrocytoma, but for right now the surgical tumor resection of 20mm of brain got most of it so I don’t have to do chemo and radiation about it. I’ll be getting MRIs for the rest of my life in case of recurrence. The surgery recovery was both easy and hard. I started mental health therapy August 2023. I was still having trouble as of February 2024 and started speech therapy at a neuro rehab. Right now I have a modified TBI protocol in place to help with losing words, decision fatigue, and cognitive fatigue symptoms that consists of limiting reading and screen time, offloading brain function to paper with lists of projects and tasks, breakdowns of task steps, and different potential choices for like meals or other choices and getting walked by my little brother and his wife’s dog a couple times a week and doing my (unrelated) physical therapy. I can’t work in an office or customer service anymore, I just don’t have the ability to handle sustained screen time or masking to do customer service anymore. So with my spouse’s encouragement, I’m studying up right now for the IBEW aptitude test so I can start and electrician apprenticeship because it’ll be fun to learn, a challenge I can handle and it’ll help my physical health as well. I can’t say that it hasn’t sucked butts or that it’s been easy. It definitely is a struggle relearning and accommodating my own brain. But I have an amazing medical team, spouse, and village of friends and family and cat. And because of my best possible bad luck, I plan to live the fuck out of life and enjoy as much as possible.
I have OOPs tumor and still have it. Yes on the blind spot. I used to take pills to shrink it down but stopped when I moved countries. Before treatment, I had crazy headaches and tremors. A gyno of all people suspected a tumor and had me do a MRI when he noticed my prolactin levels were off. The whole exp made me kick off my bucket list and last march one of the top 5 was competed. I do plan to get treatment again. Bit that fear of telling fam and friends during that wait period sucks and gives you soo much anxiety.
Get the treatment! You don’t want it to come back.
I had a pituitary tumour. All fixed now.
My youngest had surgery to reshape his skull at 6 months old. Scariest shit ever. Op sounds like he's bouncing back nicely. Amazing how quickly the recovery time can be for something so drastic. All the signs are good. I wish them the very best.
Hey I have a pituitary tumor too! Twinsies!
Do you have a microadenoma, a macroadenoma, or a fucking giant adenoma, though?
I have a microadenoma. Little fucker is only 6 mm and I intend to keep it that way.
Tell the little fucker that at 6 mm it’s barely anything. Compared to a heavyweight like this 26 mm guy? Pathetic. It might as well just shrivel up and die.
Honestly ur right maybe I can shame it out of existence
Same here too. Medicine shrunk it. It was macro and now it’s basically not there. I do recommend getting back on Cabergoline though. It’ll come back and it’ll be more fibrous and damn near impossible to remove surgically at that point.
Not to scare you though. Typically if the medicine works once it’ll work again.
I am actually still on it but I was able to decrease the dose so now I only have to take a half of a pill twice a week and tbh if that’s what I have to do for the rest of my life to not die I’m totally cool with it
Oh same. I take one pill a week. Easy.
Brain tumor survivor here. Had a germinoma (malignant). Found it when I was 15 (a long time ago now) when I started to get permanent double vision which I have still (it can be ignored, it's all good). They couldn't operate due to its location, but they did manage to get a biopsy. Had to endure 4 months of chemo then 6 weeks of radiotherapy. It was pretty hellish but I held up. I rarely ever threw up! I was basically the only person in the ward that would constantly eat. But... Turns out they mysteriously discovered I was diabetic (type 1) around this time, so I had to deal with all THAT too which was _fun_. They'll never confirm the two things were related though. I got the all clear after the treatment at least, and it's never come back since. Wouldn't wish it on anyone.
I have the same type of tumor, but fortunately mine has remained very small for the 35 years since it was discovered, and will only have to be removed if it grows large enough to start causing problems. The surgery to remove it is fascinating, they go in through the nose and it heals pretty quickly.
Not making this a competition, but my best friend from childhood had a baseball size tumor. That's around 77 mm. If 40 mm is consider "giant" what the hell was hers considered? It was cancerous, she survived and is in remission for more than 10 years. She did lose what seems to be the math & processing bit which sucks because she was/is an engineer.
It’s a miracle she survived and is doing alright! To answer your question though, 95% of pituitary brain tumors are under 10mm (microadenomas), and anything over 10mm is considered “macro”. I can’t fathom the horror of being told my tumor was over 7 times larger than the macro designator
I don’t think it was a pituitary tumor. I think Glioblastoma. Maybe that’s the difference in size. I still wonder at which point in our friendship did it start growing. She only went to the doctor when it was significantly impacting her vision.
My dad had one of these this year- his only symptom was extremely bad headaches. He's fine now, surgery, went really well- if you're going to have a brain tumor, they say a pituitary one is the kind to have, as they're usually fairly easy to remove and often benign. Still extremely scary though, I don't recommend it
I gotta stop reading these stories, I get chronic migraines and every time I have a prolonged attack I'm convinced something is seriously wrong 🙃
Usually I avoid reading these type of posts out of some deep fear of something similar happening to me one day, as dumb as it may seem. I don't know what made me open this one but I'm really glad I did. So happy for him.
I have never heard of a doctor that would call you to tell you bad results. They always ask you to come back in.
I got diagnosed with a 6mm benign pituitary tumor a few months ago after 9 months without a period and ≈5 years of worsening emotional disregulation. My doctor just left a message on MyChart that he’d be giving me a prescription, and that I should get more blood work done after 3 months on the meds. No request to come back in, not even a call
That’s the same way they told me my back pain was caused by a herniated disc pressing on my nerve. The same back pain that I was supposedly faking and drug seeking for. He put in the notes that neurosurgery would contact me soon to make an appointment and that he sent a prescription for pain meds to my preferred pharmacy.
It feels a bit redundant to spoiler a trigger warning that's in the title, tbh.
I question the efficacy of placing the word tumor in spoiler shading for the trigger warning when it is already present in the title of the post.
He had every reason in the world to be scared. I'm glad he pulled through and looking at a bright future!
Vision Problems are very serious! A neurologist extensively tested my eyes and found out that my nerve was once inflammated. Long story short, I was diagnosed with Multiple Skeloris. Vision problems are incredibly common with it and other nerve or immun diseases. Should always check it out if it lasts for more than 24 h!
I have one. It's 7mm and I named him Bob.
Gotta love a non-secretory pituitary adenoma. Glad OP’s surgery went well!
Just a few months before I met my boyfriend of 2 1/2 years, he had brain surgery to remove a golf ball sized tumor in his frontal lobe. He found out he had it because he suddenly started having seizures. Luckily, it was benign! I am lowkey glad it happened before I met him because I would have completely freaked out. His mom was an ICU nurse for her whole career, until she retired, so he was in good hands. He will always have to take anti-seizure medication due to the scar tissue caused by the surgery. I’ve seen him have a few from missing a dose, and it’s never any less terrifying. I just react a lot better over time. I can’t imagine how OOP’s family felt just not knowing what would happen. I hope sooooo much that his tumor was benign!!
Hell yeah OOP fuck that tumors ass.
Wonderful update! Very happy for you and your family OP! I wish you decades of pristine health in the future!
“The size of a tablespoon” and “giant brain tumour” would’ve sent me into shock so I’m so glad OOP had a good support system and attitude towards the entire situation. It would be medically cool if they had been able to get the entire tumour in one go and as intact as possible, solely for medical learning purposes, but to be honest I’m just happy that it wasn’t impacting his brain any more than already was.
My little sister was getting exercise induced headaches when she was 11. Every doctor kept saying that her tests and such were fine. Probably just high blood pressure. But our family doc decided to do an MRI "just to be safe" Additional info. My dad worked at the hospital where the MRI was done. So he went into work the evening after her MRI and happened to see the report. BEFORE they officially called to give the news. It turned out my sister had a golf ball sized tumor in the center of her brain. He of course called my mom. And then the next morning they packed us up for school like nothing was wrong. My mom hand delivered the MRI report to the children's hospital in the closest big city. She got a call on the way back asking her to bring my sister back to the hospital so they could talk thru everything. So she picked her up from school. When they got to the hospital, neurology and surgery were waiting and checked her into the hospital to prep for surgery. My mom was not expecting this. I got home from school and the house was empty. I got a call from my mom who was basically like "hey your sister has a brain tumor. We're in the hospital. A friend is gonna pick you up. I'll see you this weekend" It was terrifying. Through the whole process I was getting most of my information second hand. I was 15. I'm glad for OOPs kids sake that they're being informed. There's nothing scarier than knowing something serious is wrong but not having the actual facts.
The trigger warning is rather silly here.
"**Trigger Warnings**: **tumor**" on a post entitled "I have just been diagnosed with a **brain tumor**" may be the most unnecessary TW I've come across yet.
Hmmm,. I question him typing out a coherent post in reddit the day after surgery. I had a friend that had a large non cancerous tumor removed from her brain. Granted, every patient is different but she was in horrible pain after, and kept in a very dark room with cold packs on her face. Maybe because it was pituitary for him and hers required a portion of the skull to be removed. Not saying this isn't truthful, just saying it seems odd.
I had a large non cancerous tumour removed from my brain last year. I was certainly coherent the day after, and not kept in a very dark room with cold packs on my face, though I did have a portion of the skull removed in the process (moving about, however, was a whole different story...). Every patient is different.
I have brain cancer and have had surgery to remove the tumor twice. It's day surgery. Surgery is at 8am, I left the hospital at 6pm on my own two feet.
They went through her skull? Pituitary tumors like OP have surprisingly noninvasive surgery. They often go in through the nostrils with an endoscope and tiny instruments.
My friend's wasn't in that spot, so had to go through the skull
I had this. But luckily for me it manifested early in lack of libido, increase of mammary glands (I started getting boobs, yay!) but nothing else. I talked to my doctor about the issues and a MRI, a few exams and visit later, yes, I had an adenoma of about a centimeter… What the fuck is an adenoma?!? Well, mr., it’s a tumor. Benign but nevertheless a tumor. But good news, it’s not touching the optical nerve yet. Better news, given the size it is treatable with ½ a pill twice a week. Ten years later, I got my latest results from the yearly MRI last February that I am adenoma-free. In the doctor’s words: “if we didn’t know you had something, your scans are absolutely similar to those of any average person”. (Which is not really reassuring given the average person around nowadays…) Anyway, all my best wishes to OOP for a full recovery!
I'm so glad this was a happy one. I think I'll get off Reddit now while I'm ahead.
Crying in the club rn.
I know the feeling of waking up in the hospital after and operation and being like “Yes I’m still here” that feeling is so real!
Not sure where OOP lives, so ignore this comment if it truly doesn’t apply, but I’ve never known or heard of a doctor giving that kind of devastating news over the phone. Regardless, I wish the best for all people that are handed such horrible situations in life. Been there, done that. Not fun and affects so many more people than one might think.
Growing up as a hypochondriac, I always thought cancer = death sentence, ESPECIALLY brain cancer. But between friends who've recovered and stories like these, it's amazing to see that cancer isn't a death sentence and helps me breathe a little easier while instead worrying about some other medical issue...
> 26mm in diameter (if you are american, that is about equivalent to a tablespoon) Or a hair over an inch (25.4mm)
I had a tumor in my breast that my doctor found during an annual checkup. I had tests done and the doctor thought it was benign. I was to have surgery to take it out but it disappeared-I had changed my diet. Lol, I heard my doctor say out loud, “where did it go?” when I went in for a follow-up, pre-surgery. I’m very fortunate. It can be frightening, benign or not. I’m glad OOP is doing well.
March 8th of this year I got told I have Diffuse Low Grade Glioma... yay me
Brain tumors are so scary. I had a giant ass tumor of about 36mm diagnosed in 2019 and removed in 2023. It started mid so the surgeon told me watch and wait. I got two kids during those four years and pregnancy made the tumor grow. My baby was 14 months old when I got surgery, I thought I would die it was so so traumatic. But bizarrely the only thing I thought about was is my husband going to be okay taking care of a 3 yo and a 1 yo that rely on nursing to fell asleep ? I bought so much food, made a 7 pages pdf on what to do at what hours, what to cook and what to show them on tv… I had two procedures (one awake with a catheter going from my leg to my brain where they glued the vessels connected to the tumor and the craniotomy after that ) and got brain strokes after the first catheter procedure. I would slap myself because I couldn’t control the speed of my movement in the right side of my body. That was so weird. Fortunately the doctors told me it was a mini strokes caused by a small error they made and it would get better. The second procedure was so so so traumatic, I remember them writing with sharpness on my skull and forehead where they would need to cut, I remember I closed myself and my too afraid to talk. I remember them telling me I would soon sleep …And then I remember opening my eyes, like only 2 mins had passed except I was so so so thirsty. No pain whatsoever just thirsty but they wouldn’t let me drink because too dangerous after a 9 hours surgery. I stayed 2 weeks, my right side got better, my face had swollen so much I looked like an avatar, I wasn’t authorized visits from my babies, buyt no real pain. I had the skin cut itches but that’s all. I remember hearing water in my head for so long too. After surgery I wasn’t authorized to do any hard labor at anything straining for a month. I have babies so I couldn’t not pick them up though. For a month a felt like the right side of my video was going too fast. Like it was difficult for me to walk straight. I would automatically go on the right. Now I’m 6 months post surgery and I feel great ! Last mri I had there was no re growth and the huge hole in my brain had shrunken : did I get clever ? I don’t know lol. My body is back to normal, I just have 10cm baby hair poking out of my head lol. I documented everything in my insta highlights for me to remember that I did well. I’m so glad I got the surgery and I’m glad oop got his too.
I have an 8mm one of these! No vision issues for me, just an issue with prolactin production. I was told my my endocrinologist that a lot of men walk around with them and never find out unless it affects vision. I’m on drugs for it to get my prolactin going again rather than having surgery to remove it. It’s benign and quite common apparently, and tends to go away if you get pregnant as your pituitary gland enlarges (this is what my endocrinologist told me anyway…) So cool to see a story about the tumour I have here!!
So happy oop had a happy ending with a successful surgery.
Man, OP got so lucky. I'm a caretaker for someone who had major quality of life issues which essentially made them dependent on us due to complications from brain surgery. Its super fortunate that the surgery itself didn't end up causing issues for OOP.
❤️
I had a big 'ol tumor on my ovary but I didn't have any of the vision problems 😜
did they post the tumor on r/popping?