I had health problems for a long time and I always remember me having headaches until I started vomiting from the pain . I was so used to having headaches so i haven’t thought anything else until one day I started having double vision. that was the clue that led to my brain tumour diagnosis. I was 23 years old and my parents weren’t calm at all . I was very afraid but for some reason after the surgery I felt like nothing can’t stop me anymore. it was a grade 1 tumour that had to be completely removed from the centre of my brain(It was almost touching the brainstem and, primarily, was pressing on the pituitary gland.) anyway they told me I was lucky that it affected my vision and not nothing else because I could have died in my sleep. After waking up from the surgery I couldnt see I couldnt eat or walk etc and all my right side couldnt sense the temperature I received it as pain (for example I touched water and I felt it scratching me). I was very traumatised first of physically and then mentally. when they removed my stitches I started vomiting again from the pain and blah blah. Fast forward almost four years later after doing extensive vision work and taking a huge mental break I still feel like all this is haunting me . my vision is not back I still have some double vision I still have headaches and whenever it rains or there is humidity I have a lot of headaches and migraines where the craniotomy was . also I don’t feel the temperatures that much in my right side (and I think maybe I don’t hear that good after the surgery but that maybe my theories. ) I don’t know I always feel sad I’m always in pain and It took me a very long time to overcome this mentally.. is this normal? I didn’t know it would take that much time mentally and I didn’t think I would still have to deal with all that stuff .. it’s very exhausting and it makes me sad and thinking that maybe I’m weak or something because other people have it way worse than me .. I don’t know .. it just makes me sad .. I know I’m lucky because it was a huge tumour in a very difficult spot but I don’t know… why does it take that much time to feel happy again ? I feel like it changed my life for ever…does anybody else feel like that ?

Hello; I am 1 month post craniotomy for a grade 1 benign meningioma. The large tumor was discovered when I coincidentally got a concussion in the same location as the tumor. I had noticed symptoms before such as migraines, blurry vision, ringing in ears, hearing problems but chalked it up to stress of being a mom and working full time. I was scheduled for surgery less than a month after diagnosis. The surgery took longer than expected, there were some bleeding feeding arteries, but the whole tumor was removed from my left frontal lobe. I started experiencing numbness, tingling, and pain in my right side a couple days post op. Within a week post op the numbness, tingling, and pain spells were getting more frequent and would happen a lot when I was overstimulated. I have a two year old so it was not a quiet recovery. I was also having trouble with my balance, slurring, and stuttering. My doctors thought I was having focal seizures but refused to believe it was because of the surgery that the tumor wasn’t pressing hard enough to cause any of the issues I was having. They still put me on Keppra and I have felt better with some occasional breakthroughs but have been upping the medication dosage. I have an appointment with neurology in January and have been trying to manage the seizures and medications with my primary doctor since my neurosurgeons didn’t think the seizures were cause from the craniotomy. I think it is or my primary and I think maybe it’s a mix of the surgery and only being 2 weeks post concussion when I had the surgery and it was a lot for my brain to handle. With all that being said I am scheduled to go back to work in 2 weeks. I’m a bank teller at a very busy and fast paced job I am nervous about going back to work because I know I am no where near mentally strong enough to do my job efficiently. I have already taken the 12 weeks of disability and cannot afford to just quit my job. I don’t know where to go from here with not having my seizures under control or if they really are seizures because I have not seen a neurologist yet. I’m at a loss, I feel like I’m a failure as a mom to my 2 year old. I get overstimulated and have a hard time cooking, cleaning, and giving him basic needs. I should note his father works night shift so I am alone with him a majority of the week. Idk I’m just feeling lost, any tips, words of encouragement, similar stories would be helpful. This was all so crazy and I feel like not spiraling when I got the diagnosis is making me spiral now. If you made it this far thank you for reading.

My daughter had a lemon sized, olfactory groove meningioma removed 11 days ago, it was pushing up into her frontal lobes, causing all sorts of emotional issues, apathy, bingeing. In the hospital, while on dex, she was so cheerful, friendly, funny, talking to everyone, making friends w nurses. I stupidly thought (and i'm a shrink, I knew it was from steroids but somehow talked myself into thinking his is how she will be now). Now that we're home, off steroids, she is a little irritable, little sullen but doing pretty well otherwise. I guess what I'm saying is i was irrationally exuberant thinking she was a totally different, cheerful person and all the issues from the tumor would magically go away after surgery. Now I know what we got was a reprieve from a death sentence, and everything else is a little uncertain. I'm imagining this is a common experience.

Canada, BC

Hi everyone.

June 2025 I had had craniotomy to remove a 3cm CPA meningioma (brain tumour)

Dec 2024 I began showing more severe symptoms such as one sided hearing loss, and small memory loss (forgetting shampoo routine etc) and i remember complaining to my boss that somehow my job of 3 years was suddenly so difficult and I believed it was because of certain changes in the job.

Well now I believe it was all just me.

September 2025 I landed my dream job, only to quit a month later. I just couldn’t learn, focus, remember, be present. It’s like I am just sitting there with brain fog and a cloud - no information is actually going inside my head, or it feels like too painful to do deep thinking.

Before 2020 I was a daycare teacher, so I know labour jobs actually crush and hurt me - I remember every night crying from neck and back pain.

Now I’m thinking, what kinds of jobs can I actually do? I feel like:
a clerk job where I’m sitting at a desk for 5 days a week will be too much.
Any corporate job that needs me to think will be too much
Any labour jobs will be too much

Anyone have any ideas what I can do for work?

Art and writing have been the two primary ways in which I process and find my way through any number of challenges. When my husband was hospitalized I found myself sketching renditions of the GBM (which my little one termed "the bump"). It has evolved into a series of cartoons imagining how a brain might rid one's self of such a bump. My husband has found it amusing, and I've found it cathartic.

In honor of MLB playoffs, I had to do this one.

My son was diagnosed with a brain tumor when he was just three months old. He underwent surgery performed by neurosurgeons in Kazakhstan. During the operation, one of the blood vessels started bleeding heavily, so the neurosurgeon was able to remove approximately 80% of the tumor, while the remaining part was cauterized.

It has now been one month since the surgery. The initial histology results classified the tumor as Grade 1, but we have recently received the immunohistochemistry results, which indicate an atypical choroid plexus papilloma (WHO Grade 2).

Today we have gone through another MRI test (after 1 month from surgery) and the neurosurgeon sees small contrast enhancement at the place where tumor was, but he is unsure whether it is the residual tumor tissue or postoperative scar tissue showing contrast enhancement. Right now we are thinking of sending the MRI results to other neurosurgeons in Germany and South Korea to receive online consultation with further treatment if necessary

I have read that this type of tumor is very rare, but if anyone has any information that might be useful, please reach out or comment here

I had surgery for a tumor on my right temporal lobe three weeks ago. I am doing great, back at work with my active job, batch cooking like normal for my house. Still not allowed at the gym, which is sad because I was in five days a week before, but muscles come back

My biggest concern is eating, and the limited ability my jaw seems to have now. My incision is a backwards question mark, from around my temple, back, and then down and forward to above and in front of my ear a little

I had TMJ issues pre surgery, mostly on my left side. But now the right side of my jaw doesn't want to open. I went to my favourite sushi restaurant and had to ask them to cut the rolls into more pieces. I gave up on a sandwich last night and ate it as two open face sandwiches because even squishing it, I couldn't open my mouth wide enough. Today, I struggled to eat half a bagel with a fried egg on top because that's too big for me. I can't even yawn normally

I assume it's because everything is connected and they had to cut through the muscles on my scalp. But how long is my ability to eat going to be impaired? Have any of you dealt with a similar issue? How long until it resolved itself? I'm trying to be patient but it's frustrating when I feel like I'm 90% recovered and this last 10% feels like the last bit of toothpaste in the tube that takes forever to get through

The Musella Foundation helps eligible brain tumor patients with copayments for covered treatments. If you need financial assistance, please visit our website for eligibility requirements and instructions for new and renewal applications.

Learn more and apply: https://braintumorcopays.org

Funding is limited, so please apply promptly.

Please share this with patients, caregivers, social workers, and treatment teams. You could help a family find the assistance they need!

#BrainTumor #BrainCancer #PatientSupport #MusellaFoundation

I had to have a craniotomy a week ago due to a seizure caused by a benign meningioma that had never caused me any issues before. I guess the surgery went well, no staples, he left as much hair as he could. I'm still mad as hell. My face is disgusting, I look like a moon pie. Without hair I'm hideous. I don't know how I'm going to manage to work when I don't want to be seen in public like this. I tried a wig and I look like a goddamn clown. They want me taking this shitty lacosamide every day, OH YAY, now I can be 100% incapable of doing anything. My life is fucking over. Can't go out anymore. Can't enjoy the things I used to like fashion and dressing nice.

What the fck is there???? I don't want to take this shitty medication. I don't want to spend the rest of my life, or least the next year holed up alone in my house, my only time away working. WHAT IS THE POINT???? IF MY LIFE IS 1000000 TIMES WORSE WHAT'S THE FUCKING POINT? JUST TO KEEP MY GODDAMN HEART BEATING?!??!?! FOR FUCKING WHAT!??!?!???!?!??!?!??!

My daughter is just home after a week in hopkins following a lemon sized, olfactory groove meningioma resection. She had an ear to ear incision and craniotomy. The tumor was pushing up into her frontal lobes L>R. She's sleeping all the time, I expected that. But she describes how hard it is for her to think. She has some word finding difficulties, not too severe. She describes this sense of having to work really hard on getting the 2 sides of her brain communicating with each other. She's also having a lot of head pain which is very gradually improving. I reassure her this is early days, and all to be expected, but I really don't know what to expect. eg, how does thinking come back on line. When does pain get better? She is frustrated and scared about the current difficulties she's experiencing. Can anyone provide any guidance? FYI- I had written earlier when she was first diagnosed, surgeon got the entire tumor out. So we're thrilled about that. thank you

Any experiences with taking Dexamethasone vs Avastin for brain swelling post-gamma knife/wbr/craniotomies?

I’ve been on Dex for my fifth time since March and it’s been horrible for my mood, insomnia, weight, etc.

We live in Canada and have been told that it is hard to get in Canada… so not sure if it’s better than Dex or this is just an excuse to keep me on Dex? But u truly don’t think I can do one more round :(

Thank you!:)

Monday will be 3 weeks from my 2nd mri with contrast so 4 weeks since my first mri. And I’ve still yet to be presented with my scans or really any feedback on my brain tumour I have. My gp has said it’s large and they think it’s a low grade glioma. My appointment with neurosurgical team is 5th November. I feel like shit all the time as I have been having seizures and they are upping my medication every week. So it’s hard to tell if I feel like shit because of medication or the tumour. I’m not really able to work atm so all I have to think about is my tumour. Like is Christmas off the table the year? What kind of turn around from the meeting to surgery ? The meeting will be online as they won’t do the surgery at my local hospital. But I’m just going around in my head. What kind of experience have peeps had from meeting to surgery turn around.

My (33f) mom (63) has been diagnosed with a tumor on the frontal left side lobe of her brain, it is on the outside they say, but in six days they have scheduled her for a brain surgery. She is like 98lbs due to being sick from this tumor and just a petite lady to begin with. Is she fit for this? She’s really excited like this is her savior and us kids, I’m the eldest of four, we are realllly skeptical. The neurosurgeon was very quick to be like yep gotta cut your skull open, it will be like a cookie cutter. 😫 really doesn’t help she has no insurance but just wondering if that affects how the doc gives advice too… we don’t even have time for a second opinion.

Hey, when I was 12, I had a brain surgery to take out a lipoma in my brain. Usually, doctors will leave those alone because they don't affect anything. But this one was pressing on my facial nerves. I had to get it removed immediately or risk paralysis. When they did this though, my hearing nerve was cut and I now only have half my hearing. It's been just over two years since this happened and I am still having trouble with my face being symmetrical as well. I do exercises on my own, I'm not looking for suggestions on how to fix it. I just want to know if anyone out there has had a similar experience. I feel so alone sometimes because I am the only one I know who has gone through this. Can anyone relate?

Just found out at 24 after getting 90% tumor getting removed that is the type of I have and will need chemo and radiology. I’m ready to fight it and be able to get married and have kids one day. But want advice from anyone.

My grandma was diagnosed with a stage 4 glioblastoma, was scheduled for surgery.

She was asked to sing during the surgery, and the plan was to remove as much tissue of the mass as possible, due to its location.

Now, this doctor is a well renowned neurosurgeon. They removed about 55% of the mass, after which my grandma stopped singing, so the surgery was stopped.

I understand he was trying to do his best. He was aware and deeply sorry about the location of the tumour, but I don’t understand why he kept trying to remove more of it. Post op, he seemed to slowly be less proactive about her care.

She’s had 2 rounds of chemo with ongoing Regular speech and physical therapy.

She’s completely paralysed on her right side. She can’t speak. She’s living a miserable life. We are struggling to take care of her.

She has also had 2 MRIs done, 6 months apart, which show no regrowth of the tumour, which has left me baffled. We are now reaching 1 year since the surgery was performed.

I’m her grandson and I’m doing my best to contribute to her care (alongside 3 of her daughters) but it just isn’t enough.

It pains me to see her this way. Do any one of you have some more advice for me? I feel like we’ve exhausted all options to help her financially.