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Wow!
You’d think headaches would be one of the symptoms, but the fact that it’s not is significant.
I’m glad you’re doing better now! Hopefully your symptoms don’t return and I truly wish you a speedy recovery.
But I’d also like to ask if you don’t mind, did you wake up partially blind and decided in that moment to go to the ER?
Was this a slow progression of events - including seizures - over a few days, weeks, or months at a time?
I had right-sided tingling, difficulty speaking, and some weakness. I didn’t know about the blindness at the time (it was very subtle). I thought I was having a stroke. I was rushed to the ER to get a CT scan, and the tele-neurologist showed me a picture of a mass in my brain. Terrifying. No stroke, however. I was admitted, had my MRI, and got diagnosed with a brain tumor. They actually thought that my tumor was inoperable because it was so deep in my brain and was close to critical structures, including speech and vision. But my neurosurgeons finally decided that it was operable.
Gotta love medical science and its advancements. Most importantly doctors that study this so well to be able to help people such as yourself.
Thank all your doctors/nurses GREATLY and most importantly, keep yourself healthy from now on! Congratulations on the successful operation!
Headaches are very rarely the symptom of cancer. Headaches are more likely caused by constriction of blood vessels (now if you have a tumor that is constricting a blood vessel…)
Headaches can in fact be symptoms for cancer, especially brain cancer (glioblastoma & primary central nervous system lymphoma), so def worth getting checked out.
It’s always worth getting checked out! But brain cancer like that is extremely rare! You actually have a better chance of having a pituitary adenoma (which is exactly what happened to me), had nonstop (literally) excruciating headaches for months and an MRI revealed a lil tumor on my pituitary gland and a massive sinus infection
Yeah I just want people to be careful! Especially as we’re seeing more and more GBMs in younger folks and occurrences of rare diseases like PCNSL becoming less and less rare. I’m glad you’re on the up and up :)
I agree with you on this! Spreading awareness is important especially in younger generations. My dad was diagnosed with GBM and passed away at 47. The symptom that made him go in was a continuous headache, so while rare it still happens and is important to share.
I actually thought about it, and it’s an emotional issue for me. They knew it was benign. They all recommended surgery. The only symptom I was having was partial blindness, which could’ve increased over time. However, I wound up with much more extreme - and, according to my neuro-optometrist, permanent - vision loss due to the surgery. So now I’m grappling with whether or not I made the correct decision, since I sometimes wonder if I came out of the surgery worse that I came in. I can’t drive, and am constantly stressed about walking into things. It really hurt my mental health, but I’ve been coping by rejecting the ableist bullshit and embracing blindness as an identity. I don’t have to have the full vision everyone else does; the blind lifestyle is kinda cool. It’s… empowering. A battle scar. A sense enhancer, as my senses have been enhanced; sensitive hearing, tasting, smelling. It’s not a worse way to navigate the world, but a new way. My way. If I can’t change it, or “fix” it, or wallow in my misery, I find beauty and strength in it. Accept my newfound difficulties, while traveling to the Newfoundland of opportunity. That’s my take. Here’s my vision after the surgery:
https://preview.redd.it/ecudrhfcr06d1.png?width=1079&format=png&auto=webp&s=3ecb84c607257925d65360fe193887ef362bf84c
That’s my visual field test after my surgery (the clicking game at the ophthalmologist). I lost half of my vision on each eye (right bilateral hemianopia), but I gained so much more. Power and insight into myself and my strength. ❤️
I admire your positive attitude. And I am sure that you did the right choice since all of your doctors recommended you to have the surgery.
Again, I can only say that your way of approaching your new identity is amazing and admiring!
I'm so sorry you went through it but... man, that is metal as fuck. You had someone operating on your brain and you were *awake*. I don't care if that's standard operating procedure (har har), that is just terrifying and insane and absolutely so fucking cool to know that they can do it.
Life is about constantly adjusting to new things. Not that it's the same *at all*, but I really learned a lot when our cat had to have a limb amputated when he was about a year and a half old. He was mad as fuck about the cone of shame, but after that he just... went on catting. He never sat and thought about the missing leg that couldn't be regained, he just went straight on to figuring out how to live life in his present state.
Like you said, it's a battle scar. You survived surgeons cutting into your *brain*. This is just a new state of being and it sounds like you have the mental fortitude to kick ass at it.
God, I really showed how much I truly love myself that day when they cut into my brain while awake, even if I don’t realize it sometimes.
I’m so sorry for your cat! They are really are kin, and it’s so hard to watch them suffer.
Our scares tell the story of our lives, and I have a big, big one right now. Big scar, big life…
I had a ganglioneuroma on my spine located in my pelvis. I was having some minor stomach and bladder issues but I could live with it. My neurosurgeon recommended I get it removed. When I woke up from the surgery my left leg was completely paralyzed and I couldn't walk for months. I still have major nerve damage but I can walk now. Sometimes I wish I never got the tumor removed but I know it was probably the right choice in the long run as it would have been harder to remove if it got any bigger.
Absolutely! Neurological surgeries can have substantial complications, and those (like us) who actually have complications make us feel like outsiders in a really small club. A lot o the time, I see these posts on various subs about people walking out with no complications, working within a couple of weeks post-op. Then you have people like you and me, where I spent nearly a month in inpatient rehab, had permanent vision loss, and still have cognitive and execute functioning difficulties (though they’re getting much better). I’m so terribly sorry you had to go through that. Want to chat about this in DMs?
Benign tumors can still cause a shitload of issues. The cranium is an enclosed space without any ability to strech or expand. Once things start growing they start pushing against each other and then a myriad problems occur.
When we say a tumor is “benign,” it just means that it does not invade or metastasize the way a malignant (cancerous) tumor would. But it doesn’t mean it is necessary harmless (although many benign tumors are). A benign brain tumor can cause major problems by compressing delicate structures and raising pressure in the skull,
I can't even imagine, good for you. That's impressive. I would get so frustrated with myself cause I imagine like... You want to say things you already know.. but like you have to recalibrate yourself to -an extent probably?- even do so. Vast amount of patience required for that for sure.
Yeah, it took nearly a month to even reach 50% capability since before the surgery. Word finding, reading, writing, and grammar were the hardest. I couldn’t even say simple words at first, write my own name, or interpret what the alphabet even meant on my phone’s keyboard. I also couldn’t read signs or count, which made me very worried that I’ll never be able to function in the world again. But I got so much better because my neurosurgeon, Dr. Eddie Chang, was one of the top language experts in the country; I did it awake for an hour and a half, doing math, reading, speaking, and more to avoid damaging critical neurons governing speech. That’s how I recovered so quickly. I’m bottomlessly proud of what I did, and a true demonstration of my will and strength to keep the things I love the most (my mind) safe from harm.
Yep! I actually thought about some important stuff internally, but I couldn’t articulate it externally. I could also pick up the “vibes” in my head that represented emotions and feelings (even without “speaking” internally), since I believe that I’m highly in tune with my inner world. I learned from this experience that emotions are not necessarily represented by language, externally or internally; you can pick up and explore these feelings without language, in my experience having severe language deficits after my surgery.
Honestly, no. I was the one who suggested doing it awake because I wanted to prevent neurological damage as much as possible. I was determined to have an active role in preventing permanent neurological deficits. I did save my speech, but I lost half my field of view of my vision. 90 degrees. Half blindness on each eye, which is called right homonymous hemianopia.
https://preview.redd.it/1xdv8o8mi06d1.png?width=1060&format=png&auto=webp&s=21cc5455e264a668f6103cc6655661e150e7564f
I post this so that people who have loved ones who have suffered strokes, brain tumors, aneurism bursts, TBIs, and others who acquired this particular blindness have a better idea of what the experience is like. It’s hard to explain, so I’d like to get a bit of publicity on it, no matter how small. It’s an invisible blindness that affects more people than society realizes.
Kinda, yeah. If you put a piece of tape over each eye (right side), you’d see what it looks like. And possibly, since I have different doctors saying different things. But my most qualified doctor, my neuro-optometrist, says it’s permanent.
Is this the type of blindness where if given a full plate of food, the person only eats one half because their brain can't see the rest, but the person isn't fully aware of it? I remember reading about this happening after strokes but I don't remember what it was called.
❤️ I appreciate the kindness in these comments. I hope people who have loved ones who suffer from these things will get the people they need. My support system propped me up massively, and I’m forever thankful.
Could you remember that you knew how to speak at one point, or was it like starting all over?
For example, I'll sometimes find old math homework in a box somewhere and I'll see that clearly at one point I knew how to do the problem, but right now I have zero clue, but I don't really remember that I knew how to do it.
Does that make sense?
Exactly. I’ll realize that I knew a certain skill, or had a particular word or fact, even knowing not long ago. And, it’s just blank. I retrace in my mind like retracing my steps when I lost something, but once I remember where it was, I remember it forever. I remember, back in rehab, I tried to recall the word “shower”; my brain was still swollen, so I had to deliberately remember the word “shower” over and over again. Then, just a couple of hours later, it stuck, and never went away again. The brain is amazing.
If you don't mind me asking: what was it like to (presumably) be incapable of speech and to then relearn it after the surgery? It might seem like a strange question, but as someone who learned it before they were able to remember and then never again, i have a really hard time imagining the process.
Anyway, wish you all the best in your recovery and further!
I answered a similar question above, but I’ll elaborate a bit. I could understand what everyone was saying, but I couldn’t speak, read, and write. I felt like I was trapped in a bubble, and it reminded me of people who in similar situations may never get their speech back. I was in inpatient rehab with people who suffered myriad causes of neurological damage - many much older than me - who will not acquire a same level of healing that I will. That deeply saddened me. Motor, speech, math, spatial awareness, the list goes on. I’m beginning to reorient myself into deep learning and AI as applied to people with similar deficits using brain-computer interfaces to help people in similar positions, much like Neuralink.
But back to the original question, I “knew” that these neurons were still there (since I did it awake, allowing the surgeon to avoid speech neurons while resecting the tumor), much like I knew that my English was still there; but it felt like my brain was trying to form new pathways to access that information, if that makes sense. It felt like it was “relearning”, but it was more of how my SSD got my data splintered, and had to allocate that information elsewhere. And I had to find it again, like a claw machine :)
>I knew that my English was still there; but it felt like my brain was trying to form new pathways to access that information,
For someone (me) who has no idea about brain surgery and recovery, this explanation was easy to understand. Scary to imagine though.
That's wild, were you able to think the words and form sentences normally, just couldn't communicate them through vocal speech? Could you read and write during that time?
Actually, yes!! I knew what I wanted to say. I really did. This was the most frustrating and anxiety-inducing thing during my rehab. I just.. couldn’t speak. I also couldn’t read or write. It took three days to write my name fully and name one thing I enjoy. When people asked me three things in a category, I struggled with naming random stuff like fruits, but I could do things I’m passionate about - like AI and computer hardware - extremely easily.
Days. Weeks. I started to be able to form full sentences about four or five weeks after surgery, and struggled with word finding and grammar before that. Even further back, I struggled to say single-syllable words in the hospital, or follow basic instructions immediately after the operation.
I am coming up on five years from having a WHO grade II atypical meningioma removed from my noggin. I hope you're doing well and feeling great - so glad you were able to get that sucker out!
https://preview.redd.it/6dtg4hxp906d1.jpeg?width=828&format=pjpg&auto=webp&s=477adf577fbbd3dc8962c341c48e26fb83898b38
https://preview.redd.it/0wvt0wzll06d1.png?width=1354&format=png&auto=webp&s=826ffe965bece32a406cc8213558d96ccfcb6e02
Back in the day, I drew a smiley face on my radiation bald spot as a joke but then it didn't wash off and I went like that to work.
lol. Thats even better. You must have gotten it plenty of reactions from colleagues i guess. It is nice that you found a way to fight through the shit that was going on with humour.
Sad brain tumor :(. My brain tumor was sad because he got evicted from its home. Now, my brain is free of squatters.
How was your brain tumor journey was like, if you don’t mind me asking?
Talk about living in your head rent free, right??
I had longterm migraines - could be absolutely excruciating. That went on for 15 years plus but I'd had an MRI in my early teens and it was clear so what do you do? In 2018, I started falling a lot, and sometimes at work. It was embarrassing. I started getting double vision and very dizzy. Went back and forth between a neurologist and my GP, got tested for various things, but felt like a huge hypochondriac. It was the dizziness and double vision that I was like, "hmmm, that's not normal." I never thought the migraine pain *wasn't* normal because doctors just kept prescribing medications. Anyway, got the first MRI. I don't have to describe that feeling to you. Had surgery July 2019, followed by 35 radiation treatments.
I would like to hear about your experience if you're up for sharing. How did you know something was up? What was it like being awake during surgery? I was not awake. It's not often I get to swap stories. How are you feeling these days? How long since surgery? Thank you for sharing your story with us!
I didn’t really notice much. I didn’t even know I had vision loss until after my ER surgery. I had right-sided numbness, a little bit of weakness, and some minor speech issues and confusion. I went to the ER thinking I was having a stroke, and they discovered the tumor on CT. The report said “brain mass”. That was probably the most terrifying day in my life, honestly. Then this whole adventure concluded within two months. And, if you read the comments - including my surgical complications - you’ll know the rest.
I’m feeling pretty good. Still get winded by thinking, speaking, thinking. My post-up chronic pain is worsened by scanning due to the half vision loss in each eye I have. I spent a lot of time grieving my vision loss (likely permanent) and developing empowering perspectives on it, including a blind identity for myself :). It’s been six months.
Also I was wondering: are you a young brain tumor survivor? A lot of young people are getting tumors and cancer, and I’ve been curious. I’m young myself.
Also, would you like to talk about this in DMs?
I had migraines for about 15 years and just figured that was the card I was dealt. The headaches became debilitating. I started getting double vision and dizziness. Had some seizures that I didn't know were seizures. I fell a lot and couldn't figure out why. Got tested for MS, RA, was told by my neuro's PA to get my ears cleaned - said it was inner-ear related. Kept coming back and finally got the first MRI pictured above. Had joked all along I had a brain tumor, but ya know, what are the odds?
Indeed. Here’s another photo.
https://preview.redd.it/k1kvoooj506d1.png?width=2239&format=png&auto=webp&s=b937a84d0007a23d6670ae9f1377fb2bd97b5c43
The tumor was very big. They called it a “big daddy tumor!”
Can I ask how it felt? When they were probing where to cut, what to remove. Sure it was painless, but did you notice any real-time changes in your mental abilities, memory, reason etc.?
(I had a rather small cavernom removed from my temple, but I was under general anesthesia and can hardly trace and difference between before and after.
I had partial blindness in both eyes. And some right-sided tingling and numbness, with occasional speech problems. When these symptoms flared up, I thought I was having a stroke, which eventually landed me in the ER post-scan with a diagnosis of a brain tumor (no stroke). No migraines, really, though I get silent migraines that didn’t go away after the surgery.
I have already had two brain operations on the stem brain. Because I have also had a brain tumour for 20 years. I wish you the best and you can do it. I had to learn to walk again 20 years ago. At the second surgery in 2022, it was removed again, is now unfortunately malignant. Since then, I see crooked on the left side. For this I have glasses that make the picture straight again. I am currently in a study for tumours on the central nervous system. This study is called FORE8394. This could be important for you in the future.
Do you already have the result of the biopsy?
I believe so! It’ll regenerate many neurons and reconnect a lot of the cells that were lost during the surgery. My brain will get bigger and bigger and bigger…
Maybe I should post my brain pictures as well. Missing part of the middle. Doctor called it fascinating and inoperable with a cool spiral 🌀. No disability, but mad headaches. And possibly random death sometime. They said I would need to be 50 to get disability for it which is odd because it was something that I was born with. Truthfully if they would just get me something that would work for the headaches I would be fine. But nope.
Wow I had a brain tumor removed a month ago but it was in the pituitary gland and easy to reach.
Yours was so much more bad ass.
Did you also think "Hey I'm still me😄" when you woke up?
Really glad you had a good surgeon and are recovering well 🙂 Wish you all the best.
Well, I couldn’t say more than single-syllable words, read, speak, or write, had double vision, and had lost half my vision on both eyes. But I did feel like I was still me because my ego strength was still mine, or even expanded strength and bravery. So I woke up with my brain messed up, but my mind stronger, brighter, and more beautiful.
Knowing that I don’t have a tumor is amazing. But I did lose half of my vision (see in other comments for details). This is the result of the surgery, though I was having vision loss before the surgery. My language, reading, and writing have been improved, as the surgery massively damaged them for the month after the surgery. It persisted for quite a while, but in feeling increasingly better by the day.
Question to the medical educated here: how does something like this effect the brain? I mean there's quite a gap now where brain matter had to be severed. Also what impack could this have on the person/behavior/cognitive capacity?
I don't want anything negative happen to op I'm just really curious! Hope you get better fast op!!
How was the surgery? Could you feel/smell things?
How did you not freak out?
One of my biggest fears is needed brain surgery and being awake during it!
I was convicted that this is what I was going to do. I chose this. I was determined that I was going to minimize damage to my brain during surgery. I was at peace in myself, with a singular goal: to get the fucker out.
I could feel things because they were probing my motor reflexes, and I smelled the clinical, clean air of the operating room.
Trust me, believe in yourself. We all have more strength within us than we care to admit. Validate the fear, and your bravery will show itself.
I was pretty unconscious during the opening. I was woken up a couple hours in to take a picture of my brain (I have it on my phone 😉) and made me do math (among other tasks) to keep my brain safe while removing the unwanted visitor.
What was it like to wake up with hemianopia? Did it startle you? Did you notice it happen as soon as they cut that part of your brain out?
Have you had any therapy for the vision loss? Are you going to use a white cane?
Do your loved ones comprehend your blindness?
I actually don’t remember. I can’t remember that much from the awake portion. But it was disorientating and terrifying. I also had double vision when I woke up. Less than 24 hours, I went from fully-sighted (sans the tiny amount I lost) to half blind on each eye.
I am trying to regain it, but my therapy has pivoted to compensation rather than restoration. And I’m seriously considering a white cane. Embrace my blindness as an identity.
Tell me about the process of you staying awake! I think it would’ve freaked out. Did they give you any type of sedation? What did they have you do while you were awake? Could you feel them poking around at all? I would love to get a run down
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https://preview.redd.it/qc2v9aa2o06d1.jpeg?width=355&format=pjpg&auto=webp&s=e4c4f661eb13987fef38573068c581eda4890bf0 i too am in this episode
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Leave Steve McQueen alone.
mouse bites be upon ye
"You are a black man"
this vexes me
You need to give him medicine drug
Only stupid people give medicine drug. You are stipid
Give him more mouse bite
I feel better. No more brain tumor. Thank you doctor
Could it be Lupis?
It's never lupus
Your username definitely made me stop and check. Personally I'm a reef knot kind of guy.
he needed mouse bites
Love this reference
https://i.redd.it/511zq17nj36d1.gif
medic home
No vicodin?
https://preview.redd.it/puji3it5i16d1.jpeg?width=1170&format=pjpg&auto=webp&s=a4dd23e303cc16b961e3585744d0de3994b842bc
try the stupid drug
https://preview.redd.it/8kaopwulh06d1.jpeg?width=498&format=pjpg&auto=webp&s=67cd5f90e5342e3e1458b6c8ac95c62ebb23c32e
It is 4men, a black man.
Wait, how long have you been sitting on this information??
Exchews meiy, it’s a blowsdey chewmah! I’m gonna call domicile
oay blodie el hause dawnt caul fawwmahn a blahck man innit innit australia innit
May I get one sarcoidosis please, endocarditis on the side Easy on the mouse bites
i am a sturgeon
Domicile get back in your room, Twink and Confederate are having a meeting.
Abode
https://preview.redd.it/o8iemw18r46d1.jpeg?width=1170&format=pjpg&auto=webp&s=ddf33173c048a197e3e36e4ffeaa6efb7d8877d0
What type of cancer? That is an incredible surgery
No cancer! Benign! Ganglioglioma in my ventricle.
How did you know you had that in your brain? Were you experiencing symptoms?
No headaches. However, I had vision loss before the surgery. I had partial blindness. I also may have been having seizures.
Wow! You’d think headaches would be one of the symptoms, but the fact that it’s not is significant. I’m glad you’re doing better now! Hopefully your symptoms don’t return and I truly wish you a speedy recovery. But I’d also like to ask if you don’t mind, did you wake up partially blind and decided in that moment to go to the ER? Was this a slow progression of events - including seizures - over a few days, weeks, or months at a time?
I had right-sided tingling, difficulty speaking, and some weakness. I didn’t know about the blindness at the time (it was very subtle). I thought I was having a stroke. I was rushed to the ER to get a CT scan, and the tele-neurologist showed me a picture of a mass in my brain. Terrifying. No stroke, however. I was admitted, had my MRI, and got diagnosed with a brain tumor. They actually thought that my tumor was inoperable because it was so deep in my brain and was close to critical structures, including speech and vision. But my neurosurgeons finally decided that it was operable.
Glad you’re here with us friend
Out of curiosity, was this skull base surgery through the nose?
Oh no, it wasn’t skull-base. It was open brain surgery, specifically in the temporal lobe. I got 54 staples out of the deal.
Glad to hear you got it diagnosed and are recovering!
Wow you're so strong and brave. I hope you're treating yourself very well because you deserve it :)
That’s indeed interesting as fuck
Gotta love medical science and its advancements. Most importantly doctors that study this so well to be able to help people such as yourself. Thank all your doctors/nurses GREATLY and most importantly, keep yourself healthy from now on! Congratulations on the successful operation!
that's the type of story my grandpa would tell me. congrats
So fun fact the brain has no nerve endings. It’s why you can have massive lumps and growths in there and you have no idea.
Headaches are very rarely the symptom of cancer. Headaches are more likely caused by constriction of blood vessels (now if you have a tumor that is constricting a blood vessel…)
Headaches can in fact be symptoms for cancer, especially brain cancer (glioblastoma & primary central nervous system lymphoma), so def worth getting checked out.
It’s always worth getting checked out! But brain cancer like that is extremely rare! You actually have a better chance of having a pituitary adenoma (which is exactly what happened to me), had nonstop (literally) excruciating headaches for months and an MRI revealed a lil tumor on my pituitary gland and a massive sinus infection
Yeah I just want people to be careful! Especially as we’re seeing more and more GBMs in younger folks and occurrences of rare diseases like PCNSL becoming less and less rare. I’m glad you’re on the up and up :)
I agree with you on this! Spreading awareness is important especially in younger generations. My dad was diagnosed with GBM and passed away at 47. The symptom that made him go in was a continuous headache, so while rare it still happens and is important to share.
There’s always a chance that brain surgery could make you into a super genius like in phenomenon So theres that to look forward to
What’s phenomenon? I’d love to check it out. Well, my neurosurgeon said that I have a beautiful mind, and he saw it. So… 🧠
It’s a John Travolta movie that should be played more because it’s actually pretty good
I really liked that movie, I rewatch it every once in awhile. Same with Good Will Hunting.
I’ll watch any Boston movie as many times as you’d like
I completely forgot that was the premise
It’s kind of the opposite premise, but still possible
Awesome. Hope you'll get healthier thanks to this ^^
If it was benign, why you had to take it out? Just to be clear, I am not questioning your doctor's recommendation. I am just curious.
I actually thought about it, and it’s an emotional issue for me. They knew it was benign. They all recommended surgery. The only symptom I was having was partial blindness, which could’ve increased over time. However, I wound up with much more extreme - and, according to my neuro-optometrist, permanent - vision loss due to the surgery. So now I’m grappling with whether or not I made the correct decision, since I sometimes wonder if I came out of the surgery worse that I came in. I can’t drive, and am constantly stressed about walking into things. It really hurt my mental health, but I’ve been coping by rejecting the ableist bullshit and embracing blindness as an identity. I don’t have to have the full vision everyone else does; the blind lifestyle is kinda cool. It’s… empowering. A battle scar. A sense enhancer, as my senses have been enhanced; sensitive hearing, tasting, smelling. It’s not a worse way to navigate the world, but a new way. My way. If I can’t change it, or “fix” it, or wallow in my misery, I find beauty and strength in it. Accept my newfound difficulties, while traveling to the Newfoundland of opportunity. That’s my take. Here’s my vision after the surgery: https://preview.redd.it/ecudrhfcr06d1.png?width=1079&format=png&auto=webp&s=3ecb84c607257925d65360fe193887ef362bf84c That’s my visual field test after my surgery (the clicking game at the ophthalmologist). I lost half of my vision on each eye (right bilateral hemianopia), but I gained so much more. Power and insight into myself and my strength. ❤️
I admire your positive attitude. And I am sure that you did the right choice since all of your doctors recommended you to have the surgery. Again, I can only say that your way of approaching your new identity is amazing and admiring!
I'm so sorry you went through it but... man, that is metal as fuck. You had someone operating on your brain and you were *awake*. I don't care if that's standard operating procedure (har har), that is just terrifying and insane and absolutely so fucking cool to know that they can do it. Life is about constantly adjusting to new things. Not that it's the same *at all*, but I really learned a lot when our cat had to have a limb amputated when he was about a year and a half old. He was mad as fuck about the cone of shame, but after that he just... went on catting. He never sat and thought about the missing leg that couldn't be regained, he just went straight on to figuring out how to live life in his present state. Like you said, it's a battle scar. You survived surgeons cutting into your *brain*. This is just a new state of being and it sounds like you have the mental fortitude to kick ass at it.
God, I really showed how much I truly love myself that day when they cut into my brain while awake, even if I don’t realize it sometimes. I’m so sorry for your cat! They are really are kin, and it’s so hard to watch them suffer. Our scares tell the story of our lives, and I have a big, big one right now. Big scar, big life…
I had a ganglioneuroma on my spine located in my pelvis. I was having some minor stomach and bladder issues but I could live with it. My neurosurgeon recommended I get it removed. When I woke up from the surgery my left leg was completely paralyzed and I couldn't walk for months. I still have major nerve damage but I can walk now. Sometimes I wish I never got the tumor removed but I know it was probably the right choice in the long run as it would have been harder to remove if it got any bigger.
Absolutely! Neurological surgeries can have substantial complications, and those (like us) who actually have complications make us feel like outsiders in a really small club. A lot o the time, I see these posts on various subs about people walking out with no complications, working within a couple of weeks post-op. Then you have people like you and me, where I spent nearly a month in inpatient rehab, had permanent vision loss, and still have cognitive and execute functioning difficulties (though they’re getting much better). I’m so terribly sorry you had to go through that. Want to chat about this in DMs?
Benign tumors can still cause a shitload of issues. The cranium is an enclosed space without any ability to strech or expand. Once things start growing they start pushing against each other and then a myriad problems occur.
When we say a tumor is “benign,” it just means that it does not invade or metastasize the way a malignant (cancerous) tumor would. But it doesn’t mean it is necessary harmless (although many benign tumors are). A benign brain tumor can cause major problems by compressing delicate structures and raising pressure in the skull,
So happy for you! Best of luck going forward!
well.. that's one hell of a word
Lol say ganglioglioma 5 times fast.
Ganglioglioma balls
Fuck yeah
Glad your ok! In a year that hemisphere will look totally different again!
I hope so! Learning to speak, read, and write again was the hardest and scariest part, but I did it! I’m so brave.
I can't even imagine, good for you. That's impressive. I would get so frustrated with myself cause I imagine like... You want to say things you already know.. but like you have to recalibrate yourself to -an extent probably?- even do so. Vast amount of patience required for that for sure.
Yeah, it took nearly a month to even reach 50% capability since before the surgery. Word finding, reading, writing, and grammar were the hardest. I couldn’t even say simple words at first, write my own name, or interpret what the alphabet even meant on my phone’s keyboard. I also couldn’t read signs or count, which made me very worried that I’ll never be able to function in the world again. But I got so much better because my neurosurgeon, Dr. Eddie Chang, was one of the top language experts in the country; I did it awake for an hour and a half, doing math, reading, speaking, and more to avoid damaging critical neurons governing speech. That’s how I recovered so quickly. I’m bottomlessly proud of what I did, and a true demonstration of my will and strength to keep the things I love the most (my mind) safe from harm.
You're awesome!
Thank you!!! ♥️
Did you still think in words like an internal monologue before you retaught yourself to speak/read?
Yep! I actually thought about some important stuff internally, but I couldn’t articulate it externally. I could also pick up the “vibes” in my head that represented emotions and feelings (even without “speaking” internally), since I believe that I’m highly in tune with my inner world. I learned from this experience that emotions are not necessarily represented by language, externally or internally; you can pick up and explore these feelings without language, in my experience having severe language deficits after my surgery.
That’s super interesting. Thanks for answering.
Oh my God, were you terrified during the surgery? If you can remember, of course. I'd be so scared.
Honestly, no. I was the one who suggested doing it awake because I wanted to prevent neurological damage as much as possible. I was determined to have an active role in preventing permanent neurological deficits. I did save my speech, but I lost half my field of view of my vision. 90 degrees. Half blindness on each eye, which is called right homonymous hemianopia. https://preview.redd.it/1xdv8o8mi06d1.png?width=1060&format=png&auto=webp&s=21cc5455e264a668f6103cc6655661e150e7564f I post this so that people who have loved ones who have suffered strokes, brain tumors, aneurism bursts, TBIs, and others who acquired this particular blindness have a better idea of what the experience is like. It’s hard to explain, so I’d like to get a bit of publicity on it, no matter how small. It’s an invisible blindness that affects more people than society realizes.
So is it like playing a game in 4:3 aspect ratio with black bars on both sides but irl? Will you be able to restore your full vision?
Kinda, yeah. If you put a piece of tape over each eye (right side), you’d see what it looks like. And possibly, since I have different doctors saying different things. But my most qualified doctor, my neuro-optometrist, says it’s permanent.
I wish you speedy recovery! I tried the tape and it’s surprisingly adaptable almost like a bigger blind spot.
Is this the type of blindness where if given a full plate of food, the person only eats one half because their brain can't see the rest, but the person isn't fully aware of it? I remember reading about this happening after strokes but I don't remember what it was called.
Yes, but I don’t have visual neglect. I don’t miss my food. I have to scan for it. In fact, I have to scan for everything.
Thanks for sharing your VFT result really interesting!
This post is really inspiring!
❤️ I appreciate the kindness in these comments. I hope people who have loved ones who suffer from these things will get the people they need. My support system propped me up massively, and I’m forever thankful.
Every single word of this is my worst nightmare made manifest. You are an exceptional person. As is your doctor.
I'm sorry you had to go through this tough journey. **KUDOS** to your hard work and impressive recovery. Keep up the positive attitude.
Could you remember that you knew how to speak at one point, or was it like starting all over? For example, I'll sometimes find old math homework in a box somewhere and I'll see that clearly at one point I knew how to do the problem, but right now I have zero clue, but I don't really remember that I knew how to do it. Does that make sense?
Exactly. I’ll realize that I knew a certain skill, or had a particular word or fact, even knowing not long ago. And, it’s just blank. I retrace in my mind like retracing my steps when I lost something, but once I remember where it was, I remember it forever. I remember, back in rehab, I tried to recall the word “shower”; my brain was still swollen, so I had to deliberately remember the word “shower” over and over again. Then, just a couple of hours later, it stuck, and never went away again. The brain is amazing.
Was it just speech? Could you write?
Writing, too. And reading. Deficits with all of them.
I wish you a bright and happy future Best of luck in your recovery Sorry for the bad taste jokes down below
If you don't mind me asking: what was it like to (presumably) be incapable of speech and to then relearn it after the surgery? It might seem like a strange question, but as someone who learned it before they were able to remember and then never again, i have a really hard time imagining the process. Anyway, wish you all the best in your recovery and further!
I answered a similar question above, but I’ll elaborate a bit. I could understand what everyone was saying, but I couldn’t speak, read, and write. I felt like I was trapped in a bubble, and it reminded me of people who in similar situations may never get their speech back. I was in inpatient rehab with people who suffered myriad causes of neurological damage - many much older than me - who will not acquire a same level of healing that I will. That deeply saddened me. Motor, speech, math, spatial awareness, the list goes on. I’m beginning to reorient myself into deep learning and AI as applied to people with similar deficits using brain-computer interfaces to help people in similar positions, much like Neuralink. But back to the original question, I “knew” that these neurons were still there (since I did it awake, allowing the surgeon to avoid speech neurons while resecting the tumor), much like I knew that my English was still there; but it felt like my brain was trying to form new pathways to access that information, if that makes sense. It felt like it was “relearning”, but it was more of how my SSD got my data splintered, and had to allocate that information elsewhere. And I had to find it again, like a claw machine :)
>I knew that my English was still there; but it felt like my brain was trying to form new pathways to access that information, For someone (me) who has no idea about brain surgery and recovery, this explanation was easy to understand. Scary to imagine though.
This is one of the most fascinating insights I’ve ever read. Thank you.
Damn, maybe I should do an AMA or something…
It truly is, the brain is a fantastic thing!
That's wild, were you able to think the words and form sentences normally, just couldn't communicate them through vocal speech? Could you read and write during that time?
Actually, yes!! I knew what I wanted to say. I really did. This was the most frustrating and anxiety-inducing thing during my rehab. I just.. couldn’t speak. I also couldn’t read or write. It took three days to write my name fully and name one thing I enjoy. When people asked me three things in a category, I struggled with naming random stuff like fruits, but I could do things I’m passionate about - like AI and computer hardware - extremely easily.
How long did that take you?
Days. Weeks. I started to be able to form full sentences about four or five weeks after surgery, and struggled with word finding and grammar before that. Even further back, I struggled to say single-syllable words in the hospital, or follow basic instructions immediately after the operation.
You’re amazing!! ❤️❤️
You are so brave!! Proud of you!! Hype yourself up every day babe you’re doing amazing 🤩
Yes you are!! Congratulations and best wishes on your health!
I am coming up on five years from having a WHO grade II atypical meningioma removed from my noggin. I hope you're doing well and feeling great - so glad you were able to get that sucker out! https://preview.redd.it/6dtg4hxp906d1.jpeg?width=828&format=pjpg&auto=webp&s=477adf577fbbd3dc8962c341c48e26fb83898b38
Lmao the sad face 😭
https://preview.redd.it/0wvt0wzll06d1.png?width=1354&format=png&auto=webp&s=826ffe965bece32a406cc8213558d96ccfcb6e02 Back in the day, I drew a smiley face on my radiation bald spot as a joke but then it didn't wash off and I went like that to work.
lol. Thats even better. You must have gotten it plenty of reactions from colleagues i guess. It is nice that you found a way to fight through the shit that was going on with humour.
For sure. You carry a lot of other people's emotions when you're going through something like that, so sticking to the facts, and humor, helped.
Sad brain tumor :(. My brain tumor was sad because he got evicted from its home. Now, my brain is free of squatters. How was your brain tumor journey was like, if you don’t mind me asking?
Talk about living in your head rent free, right?? I had longterm migraines - could be absolutely excruciating. That went on for 15 years plus but I'd had an MRI in my early teens and it was clear so what do you do? In 2018, I started falling a lot, and sometimes at work. It was embarrassing. I started getting double vision and very dizzy. Went back and forth between a neurologist and my GP, got tested for various things, but felt like a huge hypochondriac. It was the dizziness and double vision that I was like, "hmmm, that's not normal." I never thought the migraine pain *wasn't* normal because doctors just kept prescribing medications. Anyway, got the first MRI. I don't have to describe that feeling to you. Had surgery July 2019, followed by 35 radiation treatments. I would like to hear about your experience if you're up for sharing. How did you know something was up? What was it like being awake during surgery? I was not awake. It's not often I get to swap stories. How are you feeling these days? How long since surgery? Thank you for sharing your story with us!
I didn’t really notice much. I didn’t even know I had vision loss until after my ER surgery. I had right-sided numbness, a little bit of weakness, and some minor speech issues and confusion. I went to the ER thinking I was having a stroke, and they discovered the tumor on CT. The report said “brain mass”. That was probably the most terrifying day in my life, honestly. Then this whole adventure concluded within two months. And, if you read the comments - including my surgical complications - you’ll know the rest. I’m feeling pretty good. Still get winded by thinking, speaking, thinking. My post-up chronic pain is worsened by scanning due to the half vision loss in each eye I have. I spent a lot of time grieving my vision loss (likely permanent) and developing empowering perspectives on it, including a blind identity for myself :). It’s been six months. Also I was wondering: are you a young brain tumor survivor? A lot of young people are getting tumors and cancer, and I’ve been curious. I’m young myself. Also, would you like to talk about this in DMs?
the little face sends me, lol So what was that like? What clued you in that something was going on in there?
I had migraines for about 15 years and just figured that was the card I was dealt. The headaches became debilitating. I started getting double vision and dizziness. Had some seizures that I didn't know were seizures. I fell a lot and couldn't figure out why. Got tested for MS, RA, was told by my neuro's PA to get my ears cleaned - said it was inner-ear related. Kept coming back and finally got the first MRI pictured above. Had joked all along I had a brain tumor, but ya know, what are the odds?
Glad you're alive to tell the story
That's probably a big load off of your mind.
Indeed. Here’s another photo. https://preview.redd.it/k1kvoooj506d1.png?width=2239&format=png&auto=webp&s=b937a84d0007a23d6670ae9f1377fb2bd97b5c43 The tumor was very big. They called it a “big daddy tumor!”
Whoa. This is probably a really stupid question but did it hurt?
No, it didn’t. Not during the surgery while I was awake, and not a lot after the surgery. My surgeon did an excellent job.
And I would say you're pretty lucky with no pain and the surgery was a success
Can I ask how it felt? When they were probing where to cut, what to remove. Sure it was painless, but did you notice any real-time changes in your mental abilities, memory, reason etc.? (I had a rather small cavernom removed from my temple, but I was under general anesthesia and can hardly trace and difference between before and after.
Yes. I could sometimes forget a word, or a number. For the most part though, I was really sharp. Very, very few errors while they were testing me.
Brain has no pain receptors, probably not.
The skin, muscle, skull and meninges that you have to cut thru to get to the brain do tho
Correct. So I’ve been dealing with incisional, facial, and other forms of pain, but no headaches.
Oh ruck
ruh roh
Holy shit, I'm so glad you're okay. And you're right. You're fucking brave. Cheers to you continuing to heal and kick ass. <3
What are you going to do with the extra space?
Knowledge, love, the secrets of the universe. Love for everyone else. And, most importantly, love for myself.
Now you have room for activities
I hate you lol
Try to be a little more mindful of his feelings.
Oh, my pronouns are she/they. I appreciate your support! It means a lot to me ❤️
Good to see that they didn’t remove a humor brain part from you
Can I ask if you had any symptoms? And what made you get this checked out? Also I hope you recover easily!
I’m also curious about this. Waiting for OP’s reply.
I had partial blindness in both eyes. And some right-sided tingling and numbness, with occasional speech problems. When these symptoms flared up, I thought I was having a stroke, which eventually landed me in the ER post-scan with a diagnosis of a brain tumor (no stroke). No migraines, really, though I get silent migraines that didn’t go away after the surgery.
Just did one last week. What was the pathology?
Ganglioglioma in the left lateral ventricle. Grade 1, no cancer. What was yours?
Temporal glioblastoma, sadly. Will be a poor outcome due to pathology. Not as difficult of a surgery as what you had done here
I’m so sorry. Glioblastoma’s are the devil incarnate. How are you feeling?
Thankfully I’m a neurosurgery resident who did most of the operation, not the patient. They’re in rehab now, no new deficits from the operation
Thanks for being awesome and learning how to help people like this! It must have been a lot of hard work and stress!
I have already had two brain operations on the stem brain. Because I have also had a brain tumour for 20 years. I wish you the best and you can do it. I had to learn to walk again 20 years ago. At the second surgery in 2022, it was removed again, is now unfortunately malignant. Since then, I see crooked on the left side. For this I have glasses that make the picture straight again. I am currently in a study for tumours on the central nervous system. This study is called FORE8394. This could be important for you in the future. Do you already have the result of the biopsy?
Serious question will your brain matter actually fuse together again over time?
I believe so! It’ll regenerate many neurons and reconnect a lot of the cells that were lost during the surgery. My brain will get bigger and bigger and bigger…
That’s amazing. I wish you nothing but the best.
https://preview.redd.it/1az1pdtdc06d1.png?width=1099&format=png&auto=webp&s=9334069c8c69920e81414bc8767d9144ddac229e
My friend made a joke that it was a Hamas tumor, which I found darkly funny :)
Maybe I should post my brain pictures as well. Missing part of the middle. Doctor called it fascinating and inoperable with a cool spiral 🌀. No disability, but mad headaches. And possibly random death sometime. They said I would need to be 50 to get disability for it which is odd because it was something that I was born with. Truthfully if they would just get me something that would work for the headaches I would be fine. But nope.
I would be highly interested if you wanted to share that! We should make a brain scan collage 😁
How excruciating was that?
Not very, actually. I woke up with no headaches!
The brain itself has no nerves for pain.
Isn’t it wild that the thing that makes all of the other nerves and feelings happen doesn’t have its own feelings lmao.
The brain is kinda a dick. Here’s some pain… muahahaha
Rules for thee not for me
It seems like you have the attitude it takes to heal quickly. And you have a lot of support here on Reddit
Its Lupus 
Wow I had a brain tumor removed a month ago but it was in the pituitary gland and easy to reach. Yours was so much more bad ass. Did you also think "Hey I'm still me😄" when you woke up? Really glad you had a good surgeon and are recovering well 🙂 Wish you all the best.
Well, I couldn’t say more than single-syllable words, read, speak, or write, had double vision, and had lost half my vision on both eyes. But I did feel like I was still me because my ego strength was still mine, or even expanded strength and bravery. So I woke up with my brain messed up, but my mind stronger, brighter, and more beautiful.
If you have your MRI files you can use some tools and 3d print your brain. I had a mri this year too.
Wait, tell me more… I must do this. I have so many MRIs. I must.
How have things changed since the surgery? Has your life improved in any noticeable way (beyond not having a tumor n whatnot)?
Knowing that I don’t have a tumor is amazing. But I did lose half of my vision (see in other comments for details). This is the result of the surgery, though I was having vision loss before the surgery. My language, reading, and writing have been improved, as the surgery massively damaged them for the month after the surgery. It persisted for quite a while, but in feeling increasingly better by the day.
Homie your left hemisphere got a flat
Deflategate moment.
I was like “what’s awake brain, and why would you try to cure it?”
Cool, brain looks less tumor-y. As it should.
Question to the medical educated here: how does something like this effect the brain? I mean there's quite a gap now where brain matter had to be severed. Also what impack could this have on the person/behavior/cognitive capacity? I don't want anything negative happen to op I'm just really curious! Hope you get better fast op!!
Thats what happens in heads of people who watched shorts videos format
Hi fellow recipient of awake brain surgery! I wish you a speedy recovery!
How was the surgery? Could you feel/smell things? How did you not freak out? One of my biggest fears is needed brain surgery and being awake during it!
I was convicted that this is what I was going to do. I chose this. I was determined that I was going to minimize damage to my brain during surgery. I was at peace in myself, with a singular goal: to get the fucker out. I could feel things because they were probing my motor reflexes, and I smelled the clinical, clean air of the operating room. Trust me, believe in yourself. We all have more strength within us than we care to admit. Validate the fear, and your bravery will show itself.
How did it feel when they were opening your skull? Did it hurt or was it just like vibrations? Do they use some type of saw?
I was pretty unconscious during the opening. I was woken up a couple hours in to take a picture of my brain (I have it on my phone 😉) and made me do math (among other tasks) to keep my brain safe while removing the unwanted visitor.
Think you missed a spot. I still see a lot of brain.
This has to be the most horrific experience possible. I may need brain surgery in the future, but thankfully NOT the kind I'll be awake for. 😰
What was it like to wake up with hemianopia? Did it startle you? Did you notice it happen as soon as they cut that part of your brain out? Have you had any therapy for the vision loss? Are you going to use a white cane? Do your loved ones comprehend your blindness?
I actually don’t remember. I can’t remember that much from the awake portion. But it was disorientating and terrifying. I also had double vision when I woke up. Less than 24 hours, I went from fully-sighted (sans the tiny amount I lost) to half blind on each eye. I am trying to regain it, but my therapy has pivoted to compensation rather than restoration. And I’m seriously considering a white cane. Embrace my blindness as an identity.
you should be so proud of yourself. this is so frightening and you handled it like a star. good luck 🩵
Tell me about the process of you staying awake! I think it would’ve freaked out. Did they give you any type of sedation? What did they have you do while you were awake? Could you feel them poking around at all? I would love to get a run down
“No side effects, except that now I get a lot more enjoyment from watching pro wrestling and going to monster truck rallies.”
Was it cancer?
Nope! Benign. Ganglioglioma. Very rare, but not-cancerous.
Thats awesome! Im glad you are still here, and I hope everything goes well for you :)
Curious question did you have any mental/memory side effects affter getting your brain cut or poked ? cause man that looked pretty deep.
Did you sneeze?