r/braintumor

Day 6 post recovery. I've read up on others experiences but ofc your own is always the important thing. Good God y'all. Please give me hope. The packaging comes out tomorrow...will I truly feel better? When will my head not feel like this ALL the time? Anything you got. Needing it from my bed 💜

CE: weight stigma, suicide, sex, cursing

TLDR- medical system failed me. Misdiagnosed with depression. Came close to death before finding real diagnosis by demanding ER CT scan. Large brain tumor found behind right eye.

They didn't do a brain scan prior to treatment even though I asked for one. How else do you track progress? Doctor told me "it's to expensive ". The tms treatment had no effect on my "depression " because the diagnosis was wrong. They did tms left side and I started having migraines. They switched to right side stimulation and that is where my tumor was located. The migraines made me vomit. The summer heat increased the swelling. I was going around with a ziploc bag to vomit in while I continued to try and live a normal life. I was prescribed migraine medication and anti nausea pills but they has no effect. I went to pcp to try and get imaging but the closest center had a 2 week wait. I was starting to have right side stroke symptoms on my face.

I asked to go to ER. Called my 21 year old step daughter to drive me. Immediately got a CT there ams they found a large tumor behind my right eye. I was so relieved to get the real diagnosis after 2 years of chronic illness rapidly accelerating despite trying every treatment available for depression. Dozens of doctors, blood tests, medications, genetic test, therapy, yoga, leaving work on fmla, dieting, working out, trying to lose weight but only gaining despite my best efforts, I tried everything to help my body.

For 2 years maybe longer the tumor was slowly getting bigger and pushing my right hemisphere brain back. My brain started to shut down all non essential functions. I was turning into a zombie. I thought I had aphantasia because I could no longer visualize pictures. Brain fog moved in. Hobbies didn't interest me. I felt disconnected from loved ones. I was scared. I didn't understand what was happening to me.

I lost my creativity, my connection to my faith and everyone I loved. I was suicidal. Life didn't seem worth living and felt like it would never improve. I was scared of going to hell or failing to complete an attempt and ending up disabled. So I planned and ideated instead. I sat in my running car in the garage and cried while trying to suffocate. Didn't work. I made a noose and researched how to do it properly. Meanwhile continuing with my depression treatments. I'm so glad I never went through with it.

I went on vacation with my mom to see my sister in Hawai'i and had some fun. But I was tired. I would sleep all night and wake up with no energy. I was told to exercise more and eat right. Fat shamed by my family and doctors. Am I lazy? Maybe. No energy to do laundry or dishes or cleaning. I am a piece of sh\*t. Not good enough. A worthless waste of space.

So after ER I was ambulanced to the closet hospital with a neurosurgeon. Stabilized in the ICU until my turn for surgery. Surgeon said a few more days and I would have gone blind or died suddenly. June 9th was my turn and I had faith God put me in good hands. The surgery was 9 hours total. Went better than expected. My right eye was salvaged. Tumor sent off for biopsy. When I woke up I felt amazing. Everything came rushing back. I was me again and better than ever.

The recovery process will be long. This was brain surgery not wisdom tooth removal. My brain is confused as to what happened. My body was weak from being bed bound. I didn't feel the sun for 3 weeks. Light hurt my right eye so bad. Too much sound or light or activity overloaded my brain quickly. Executive functioning and impulse control were dysfunctional. I couldn't regulate my emotions. I felt disconnected from my own body. I was so scared and kept asking nurses and doctors how was I doing and what was needed to help me recover. I couldn't see out of my swollen right eye. I couldn't think straight. My family was unable to visit me in the hospital, so I was alone most of the time. I started calling friends and family to reconnect using video calls so I could see their face and their lips while talking and to see their eyes connect with mine helped a lot

I was a fall and seizure risk so not allowed out of bed alone. The hospital was short staffed so I couldn't reliably get help. I didn't want pain meds because of a bad trip from oxy. So i lived off ice packs for the pain. I begged nurses to let me walk the hallways but they were too busy to babysit me. I was able to walk with a walker but only under supervision.

I had no one to hug me to advocate for me to explain what's going on. My friends helped but their own lives are so busy. I felt so helpless and scared and lonely.

I was told by a hospital neurosurgery lady that once I got to outpatient treatment I would make rexovery progress. She assumed I would be discharged after a few days.

My left arm swelled up for 3 days then the pressure popped painfully. Sonogram showed a blood clot. Specialist came in and helped me.

I developed a strange rash a few days after transfer to neurological recovery unit. all over my chest, neck and waist. Not itchy or painful thankfully. No treatment was provided.

I couldn't poop. No muscle action, no urge, no gas. My abdomen bloated to painful levels. I begged everyone to help me. I would do anything. They gave me stool softeners, 5 different enemas, all the prune juice, this lemon fizzy thing, miralax, ducolax, but nothing worked. For almost 3 weeks I couldn't poop. I started to think my gut brain axis got severed. I thought I was gonna die from not pooping. They did an abdominal xray but nothing was compacted. I was miserable. Suppositories helped me feel some cramping but still couldn't move stool.

Finally my aunt called my mom and said for me to get the colonoscopy prep liquid. So I did and and chugged the first dose. The hospital decided to release me to rehab an hour later. I pooped all the way there and then got my first shower since being hospitalized on the 5th of June. It was now June 17th, 2026.

Finally a place to heal. Rehab was transformative.

I made so many friends there. Talking to people felt so good after being alone for so long. I could go for walks, outside even! I felt the breeze, saw birds and flowers. Touched a tree. Felt the rain on my skin. Snuggled with therapy dogs. I felt alive again. I can't wait to go visit and give back as much as I can. I want to help everyone have a good life and make a difference in the world.

When I had moments of mental clarity, I would write down things to tell my doctors and nurses because my working memory was impaired. I exported my thoughts to paper.

I got better at listening to my body. I could understand what it needed and I would give it the nourishment necessary to get better. I told my doctor about my extreme pain levels and they overhauled my medication so that I could function better.

When I could somewhat see out of both eyes, I started to organize my brain by Journaling and writing notes. My body was weak but my mind was steadily getting stronger. I was motivated and positive and happy to be alive.

I discharged home on June 30th. Can barely walk but my mind is getting organized and I developed systems and routines to help me.

I'm on the path to getting my life back and I'm going to make sure it's a kick ass one because it's the one life I have.

And I lived happily ever after. The End.

Had a craniotomy on the lower right side of my head. After about a week, i started developing a clogged ear as if there was some water inside. Has anybody experienced this, does it go away. It has been 2 weeks now since the surgery.

Hi everyone. I’m a grade 3 Astro idh mutant diagnosed in May of this year. 28 y/o female. I made a post a while ago asking about group chats or servers, to stay connected with others. But I didn’t get much of a response, which makes me think maybe we have a need for that?

Let me know if that’s something you might be interested in! If there’s a need I’ll make one myself, potentially open to having a couple moderators run it with me.

Bonus points if you have any ideas for a good server name lol!

Comment if you’re interested ❤️

My friend was diagnosed in May 2026 with a tumor. Initially, they said it was in the spine and that if it was not operated on quickly, it could lead to paralysis. He underwent surgery, and about 7.7 cm of the tumor was removed. However, some tumor still remained. Later, doctors said it is located in the spine but is related to the brain. After further tests, they found it is a diffuse midline glioma. Now radiation therapy will start. Does anyone know about this????????can it be cured, or does it depend from person to person? What could be the life expectancy?

Alle 3 Monate steht nach Bestrahlung die MRT-Nachsorge an.

Ich möchte diese Kontrollen in meiner Klinikwahrnehmen und dort auch in Betreuung bleiben.

Mein Wunsch ist es:

Die Besprechungstermine nach (MRT) mit Onkologie nur noch im Ernstfall wahrzunehmen, falls der Befund auffällig ist.

Mich interessiert ob das möglich ist - oder eine Pflicht besteht - auch wenn alles sauber ist im MRT ?

Kann es z.b nicht einfach über den Hausarzt laufen?

Über Unterstützung / Tips würde ich mich sehr freuen.

Eine betroffene Patientin

i am having left side headache, jaw and shoulder pain for a year now. been to few dr and have been advised its muscle related and was given muscle relaxation. few weeks ago i got this sudden double vision which disappeared in less than a minute. But when i tried looking up they say double vision is likely neurological issues. I did see an ophthalmologist and she said my eyes are healthy and do not see any neurological issues.

Is it possible to have brain tumor from a CT scan i had 18month ago? I am very confused as i have terrible anxiety and these symptoms do not resolve and my dr just brushed out saying muscle issue.

Thank you in advance

Hi I haven’t been in English culture so my words might be awkward.
I’m in early 30s and found out I had a meningioma so that I had to get a surgery. Doctor said 90% of cases are benign and happens usually in 5060 yo. But my tumor was grade 2 and pathologically it was like quite aggressive cells and it demands a radiation therapy too.
I’ve researched it and it’s quite highly recurrent tumor.
Thank god that I had no complications after surgery and doc removed my tumor completely but since I’ve known about my tumor and chance to be recurrent someday It’s hard for me to make any life plans like working, dating or big decisions. I’ve had to pause my work career which is physically demanding and shift work that I’m not sure it’s okay with tumor recurrent possibility and my dating or anything because of my physical conditions. I feel like I have some obstacles in building my life forward. I’m trying to be positive and focus on good results but sometimes I feel low and get scared. How you guys stay positive and avoid to think about bad things? There are no meetings or mental supports in my country so I have to deal with this feeling by myself. I have good support around me but I think they can’t fully understand my emotions. My radiation therapy will start soon and I’m scared of it. Maybe that’s why I feel low tho It’s really tough journey, everything is so new to me and not joyful haha 😂

(For comtext: I am 14F) My mom 50 and was diagnosed with a brain tumor very close to her eye about a month ago. She is currently doing daily radiation therapy for it. She says she's tired and in pain, which I completely understand and I've been trying to help as much as I can, but I am also chronically ill (doctors aren't sure what illness exactly) and have ADHD, so sometime I forget to do a tiny thing and then she just yells at me while I apologize profusely. Just recently, I brought in a huge amazon box (it wasn't too heavy) and had to lift it with one arm on the side and one on the bottom while it was digging into my shoulder. When I told her about it, (I wasn't complaining, just telling her what happened) she said I need to exercise, walking won't cut it. I tried to tell her that I do exercise, but I don't like to do it in front of people. No matter what I say, whenever I do something she thinks is wrong, she just yells at me. She claims she is "losing her filter". Is this a real thing? It really hurts when she yells at me and explodes about little things. Again, I'm not trying to complain. I just want to know if this is real and maybe how I can help de-escalate these things.

Buonasera a tutti. Ho avuto diagnosi di astrocitoma IDH1 mutato grado 3

Ho subito l'intervento chirurgico il 1 luglio 2025, poi ho fatto il ciclo di radioterapia e successivamente temolozomide finita ad aprile.

Ora a manco distanza di un anno, mi hanno trovato una recidiva piccolina di circa 1 cm. Il problema è che si trova vicino l'area motoria e il neurochirurgo mi ha detto che avrei rischio di paralisi molto alta (a detta sua 80%)

Quindi ora sto in grande dubbio se fare questo rischioso intervento oppure provare con la radioterapia e l'alternativa chemioterapica..

Qualcuno sa darmi una mano? Sapete se ci sono nuove tecnologie da qualche parte?

Non so proprio cosa fare e ho tanta paura di entrambe le cose

I 24(M) have had 3 tumors so far
1st was removed through my nose at 10
2nd was frozen with radiation at 16
3rd was again removed through my nose at 22

I now have a lot of scar tissue and a nasal cyst. This nasal cyst leaks mucus and causes my nose to produce a lot of boogers. I can smell everything inside my nose if I don’t rinse it every 24 hours. Every morning I have to deal with coughing up this BS. My nasal surgeon has said that there’s nothing they can do to remove the cyst as it would probably just cause more issues. not sure if I’m looking for advice or help & I don't care for sympathy.

Just wanted to share.

So as the title says. Last week my brother, 39, was diagnosed with a brain tumor in his left frontal lobe. Over the last month the symptoms started, he was having weakness down one side of his body, debilitating headaches, blurry vision. He was becoming disorientated and slurring his words, his blood pressure was also consistently high. A month ago he was completely fine.

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He is waiting for a further scan to see what type of tumour and if it's cancerous or not, but I'm so worried because of how fast his symptoms have come on and worsened. Does anyone have any advice or has dealt with this?

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Our whole family is in pieces, I'm trying to keep everyone's spirits up but I'm fucking terrified of losing my brother, and as I say with how quick the symptoms have come on and worsening its terrifying me. Over the last few days alone he's losing vision in his one eye.

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Thank you

Hello everybody,
I recently underwent a craniotomy - 4 months post op-
I actually got some harsh news last week with the latest MRI review.
there’s been some growth venturing into a different part of the brain. I’m starting a new targeted brain tumor drug called Vorasidenib , for anybody that doesn’t know what that is - it’s a daily pill - designed to delay growth or even shrinkage As for side effects, it includes nausea, headaches but mainly, it’s a killer on my liver, so will not be drinking at all and infertility.
For the whole duration of time I’m on the meds, I’ll also be having an MRI every 3 months to keep a close eye on the tumour.
Should be starting the medication late this week/early next week.

Has anybody got any advice or some insight on this.

Thanks,
CS

Hello All, I have an upcoming pituitary surgery to remove a macroadenoma 2.9cm with optic nerve involvement and it’s leaning on one of my carotid arteries. I’m alittle worried of surgery so close to carotid arteries can any one share more information on there experiences ?

Im having surgery in August until is there anything That can stop it from growing or get smaller ?

Hi guys, 21f here. A month ago I was diagnosed with "something in the back of my head" in medula oblongata. Doctors can't tell what that thing is, because it is very unclear. The only thing they know that it's 3.3x3.5cm and that only biopsy after operation will show what is it. I just wanted to ask how do you bear with your feelings when you wait?.. because I have no one to talk to, as if no one gets me. My family is getting defensive when im trying to talk to them about it, my friends.. are not really helping.. they continue as if it didn't happend and nothing is happening..
I just don't know how to continue living because they told me that that kind of surgery is really hard and only one hospital in my country agreed to take my case. They told me that there's a chance I don't wake up later and the chance from severe flaw that might appear during surgery
I am helpless, any advice is welcomed. Thank you

My father is 73, 6 weeks ago he woke up and fell, having no movement in his left side. Tests and biopsies later…. he is dying of high grade methylated glioblastoma. The tumor is towards the back of the frontal lobe. We are on week 3/3 of radiation, chemo, and dex. 5 days ago he turned into an angry, mean, cussing, yelling at everyone type of person. It’s breaking my heart. Docs keep saying it gets worse before it gets better. But we have no better. He is already immobile and completely dependent- which happened so dang fast. He’s so mean to my mom. I feel like I can’t take this, but I know it’s not him. Anyone deal with this? He’s losing his grip on reality…is it the tumor, the treatment or both. I just want to cry most days. I know this is the end and hate that these are the memories my family and I will be left with. Any insight would be appreciated. I wouldn’t wish this crap on anyone.

My husband 40M, underwent a crainiotomy on 6/11 to remove at 5cm mass on his right posterior paretial lobe. Initially told it was a DNET, then low grade glioma. Well preliminary pathology came back grade 3 astrocytoma with idh mutation. We are in NJ, looking for doctors/hospitals for a second opinion. We are at a loss. Thank you in advance!

Hey friends! Me again! I had my craniotomy last week (Thursday, June 18th) I was released from the the hospital on Saturday. I felt alright until today. There's so much pressure at the incision site where they took the skull out. I can feel it moving around and it feels like it's coming out when I chew. It's hurting like it's pushing against the staples. I have been fine until today. My family is weird when I mention anything, and I don't want to bother the doctors office if everything is fine but it's hurting today and I'm a little woozy. Not sure if I need to call the emergency line or just sleep it off.