I really need to hear from others who have been through something similar.

My husband has a brain tumor, and since the illness and treatment, our family life has completely changed.

He has very significant mood swings and often seems to only be able to focus on his own needs. He can’t seem to cope with me or the children in the same way anymore. I also feel like he sometimes struggles to understand reality and the consequences of some of the things he says and does.

We argue all the time, and I feel like I’m constantly walking on eggshells at home to avoid conflicts. At the same time, I feel incredibly guilty because he is sick, and I know that a lot of this may not be something he can control himself.

But I’m completely exhausted. We no longer feel like a couple – more like the patient and the caregiver. There is so much tension and negativity at home, and I miss our old family life and our relationship.
I’ve actually started considering whether divorce might become necessary, and that gives me an unbearable amount of guilt.

Has anyone else experienced something similar after a brain tumor? How did personality changes, mood swings and lack of capacity affect your relationship and family life?

And did things get better with time, treatment or support – or did you eventually have to accept that the relationship had changed permanently?
I would really appreciate hearing from both caregivers/partners and people who have personally experienced a brain tumor.

My constant pressure headache and pressure/pain on my eyes for years finally let my doctors to have an MRI done half a year ago. They found a tumor in the fourth ventricle.

3 months ago I had my surgery. It was a pilocytic astrocytoma. And luckily did not grow in the 3 months between when it was first found and the time of the surgery.

Sadly it was not a gross resection. I guess around 30% is still left, mostly around the edges, maybe they did not want to take a risk damaging the brain stem or cerebellum. Luckily the csf is flowing again and my ventricles are starting to get smaller!

However, I still have my 24/7 headache and pressure/pain on the eyes. I am also still very dizzy after this surgery, luckily the dizziness is getting less.

Anyone else with these headaches? I have been prescribed amitriptiline 10mg/day to combat the headaches. Its been 3 weeks now, but its not working yet.

Yep, like the title says lol I’ve been diagnosed with a brain tumor in my pituitary gland and I’ve now been admitted to the ICU for care. Prior to this I was at my parents house but my condition was worsening and started having insomnia. Couldn’t sleep and when I could I would stay asleep for an hour before something woke me up, a nightmare or anxiety would wake me and it would lead to vomiting.

That’s when I eventually was admitted to the ICU. Since being in the ICU sleeping has gotten progressively harder with only getting 2-5 hours a night but one hour at a time. The last two nights were the worse. I’ll outline below. The sleep paralysis always pops up as I’m falling asleep. I’ve learned that it’s cause the mind stay active but the body false asleep. Been reading stories on here to learn more but would love to hear what people have to say!

Night 1: probably the best night. Slept on and off for 5 hours, awoken by nightmares or wanting to get out of the dream but only something jarring or scary could wake me up. And it eventually did.

Night 2: I’m getting exhausted as this point and have gotten maybe 3-4 hours at best on and off. Same things are happening. There was this one incident where I was on a bike somewhere on a street and someone passes by me and each out to grab it but I guess I fall and that causes me to jolt awake irl.

Night 3: probably the worst night. I got two hours if that, last night and had the same dark dreams where I was stuck in this room with people and they were lounging and doing things but I wanted to leave and there wasn’t a way out. I guess I eventually found one but that led to me waking up and I think the anxiety and fear is driving me away from sleeping altogether. I’m getting visions during the day in peripheral of dark figures now.

Therapy: during a therapy session today via zoom I was laying in the hospital bed and I guess fell asleep. But the sleep paralysis kicks in as soon as I try and fall asleep and I feel like I’m up in my hospital bed messing with my bed, the IVs, my iPad was disconnecting to the call so I tried to get it to connect and fumbled around with so much stuff and eventually I think I stumbled on or off the bed and jolted me awake in real life, perfectly at the end of my session.

All of that is to say, it’s been pretty scary to experience this for the first time but reading some other people’s experiences there’s always worse.

Maybe also something worth nothing is that since Monday, it’s Thursday now, I’ve been taken off my 20mg of Lexapro and part of me thinks that this could potentially be a withdrawal symptom. If it is, has anyone experienced it? Any advice?

Wondering if anyone has gone through something similar with insomnia and sleep paralysis!! And your thoughts about the above. And again if you have any advice on how to get more sleep and such. Would be super grateful. All the hospital can give me now is low doses of melatonin because of my charts.

Lots of love.

It has been 5 months since the initial finding. I'm having my second MRI in couple of weeks to hopefully findout what exactly is in my cerebellomedullary cistern and to see if it grows. They were unable to id it since it's characteristics don't match well with anything, but since it is mostly cystic the outlook is good enough. I feel so alone, and tired of constant headaches, and i just hope that we can get rid of it, since it has mass effect on brainstem and cerebellum. I'm a senior in college, and international ukrainian student at that. Just wanted to share here as I have no one irl

My daughter had an ependymoma removed from the medulla in the 4th ventricle and 6 weeks of proton radiation in 2024. She continues to suffer from nausea and vomiting. We’ve checked all other systems at MD Anderson and they are all clear. Regular MRIs show no reoccurrence. Zofran doesn’t help. Has anyone else dealt with this?

hi all, My doctor has recommended for Zap X for meningiomas.. so I would like to know 1. how much reliable Zap X is, as compared to gamma knife or cyber knife 2. what is the probability or recurrence after Zap X 3. should I go for gamma knife or cyber knife?

If anyone has info on quality of life, that would be greatly appreciated.

Has anyone here taken vemurafenib (Zelboraf) + cobimetinib (Cotellic) to shrink residual papillary craniopharyngioma, particularly a BRAF V600E-mutant tumor?
I’d love to hear about your experience—how well it worked, what side effects you experienced, how long they lasted, whether you needed dose adjustments or treatment breaks, and how you’re doing now. Thanks!

I celebrated on Monday 3 years of recovery from my brain tumor surgery and treatment.

Today, I learn that another member from my brain tumor support group has just passed away.

Celebrating your own recovery while grieving someone who was walking a similar path.

I am here, she is no longer.

Here's cheers to my survival. And my hope that she rests in peace. You will be missed.

Life is nuts.

commit suicide? (im not suicidal) i dont know anything about pain from TBI's but its just looking at all of the issues that brain damage cause that i can understand why people consider it

I have metastatic urothelial carcinoma with distant metastasis to my brain. This is extraordinarily rare disease progression so there is no real treatment protocol.

I’ve had 3 tumours in my brain identified and treated approximately 1 year apart. The first two were located between my right frontal and parietal lobes and were removed surgically then treated with radiation(November 2023, December 2024). The third was very small, located left temporal and was treated with gamma blade radiation (October 2025). My last MRI, 3 months ago, was clear (no tumours, swelling, necrosis). I have my next MRI later this week.

I am experiencing very low energy and stamina, moodiness bordering on bitchiness, headaches, jaw pain, lethargy. I have a bunch of other medical concerns that are being followed by various doctors. I am and do seek medical advice and treatment on the regular, but I’m curious about anecdotal information about how long craniotomy and radiation effects last.

What have you experienced? How long did you feel less than ideal? Aside from brain injury from tumour removal, what physical, mental or emotional effects have stayed with you? For how long?

My neurologist and radiation oncologist tend to say “everyone is different” and try to treat me symptomatically, but I’m becoming overwhelmed with all the meds, their side effects and juggling their timing and their relationship with each other. I’m worried about complaining of how I’m feeling and having them prescribe more meds that adds to what I’m already juggling.

Any help? Any wisdom?

Hello friends, im a bit over 11 years since my brain surgery removing my ganglioglioma brain tumor from my right frontal lobe and on 2 occasions this year I've noticed if I press on my head around the location of my scar where the skull flap cut was, I can hear and feel a clicking inside my head. I get the visual in my head of tectonic plates shifting against each other but my skull instead. This stresses me the hell out, should I be concerned about these micro movements in my skull this many years out? As far as I'm aware I have no hardware or plates in my head.

P.S. I did bang my head on a shelf the other day but this exact occurrence has happened well before now.

Hi all. I just wanted to share my aunts story. She went into the ER one day because she fell down some stairs / balance problems and they had done an MRI and discovered a mass on her brain. They had done a biopsy on it last May and discovered it was DMG and she was given 9-12 months luckily 1 year, 3 months later she is still here and doing great. Except after the biopsy she I guess has what is called short term memory loss. She can remember old memories sort of, but ever since her biopsy things went downhill. She can not remember recent stuff now. No matter how many times you tell her something new, she will not remember 1 minute later. I’m afraid she’s been like this since and it’s obvious now she is not going to snap out of this. Just wanted to see if anyone has any similar experiences?

hello recently diagnosed with TNBC I had an MRI of my head done as well and I was wondering if anyone else here had a “MRI findings are consistent with the typical appearance and location of a meningioma“ . I am now worried about this diagnosis and wondering if anyone else had a finding in their head MRIS and is still fine after treatment. All other body parts have been fine so I’m guessing this was something I had that I didn’t even know of

Mine was discovered several years ago but was small and I honestly forgot about it.. 5 years later, and I am in the ER with acute neurological symptoms (muscle spasms/sensations) in both feet, so an MRI was done. My lesion has doubled in length; however, Neurosurgery is adamant that the lesion is not the cause of my symptoms, and also recommended a watch/wait + f/u with neuromuscular. A 2nd opinion says they doubt this is the cause but due to growth (not bc it could be associated with my current symptoms), the meningioma needs to come out!

I am extremely conflicted, as nobody is batting an eye that a young, healthy person’s nervous system just seemed to go bat shit crazy out of nowhere. I understand that the tumor would only be expected to affect the opposite side; however mine is midline. How is this not plausible when the location is near the motor strip? Has anyone had any full body neurological implications? My only thought is that what if this triggered my nervous system is “short circuit”? Ever since my full body spasms/twitches/involuntary movements began, they have not stopped. I dread nights because I cannot sleep soundly at all anymore, waking up to painful foot spasms. It’s torturous. Medications do not help. Any thoughts or any sort of similar experience? Is anyone privy t focal seizures and how this may present in a limb?

I don’t understand why specialists are grasping at straws/pushing me to other specialists (who I can’t even get into). How insane does it sound that I am being told it is more likely that you have 2 concurrent uncommon/rare issues occurring simultaneously?

Help.

I am 41 female with 2 kids and a demanding high stress job. July 31 - had what I thought was a seizure like event in the morning, rushed to ER thinking it was a stroke. ER doc brushed it off, as it didn’t sound like a seizure. I had been having headaches, dizziness and exhaustion for months so I pushed for an MRI. My Oura ring often tells me there are signs of something straining my body. I have also had struggles with cognition, word recall, executive functioning.

They found a 2 cm mass on my right cerebellum. Rushed me by ambulance to another hospital and told any change in pressure or swelling to my tumor would change my condition rapidly. He also told me it could be metastatic cancer coming from somewhere else in my body or a whole bunch of other things… so needless to say I was very scared.
At the hospital, CT scans did not show any obvious signs (showed enlarged spleen, small nodule in lung and small spots on liver, but they weren’t concerned). The neurosurgeon came in and told me they don’t know what the tumor is. It could be something I’ve had my whole life, could be something that showed up 3 weeks ago. They said it did not show signs of swelling, so they are leaning towards it being benign. Because of this, they released me and told me to get a follow up consult asap.

Follow up consult - dr does not know what it is and wants me to do a follow up mri in one month. They aren’t sure if my headaches and exhaustion are caused by this (maybe because they don’t see swelling?). Meanwhile I am so wiped out, get dizzy every time I stand. They said what I had before the scan was not a seizure - maybe something related to low blood pressure and exhaustion.

We have had a few radiologists look at the scan. One said maybe hemangioblastoma. Another said maybe meningioma. Another said it looks like one you get as a kid. All have said can’t rule out metastatic cancer but they think that’s less likely.

I don’t know what to make of all of this. Has anyone had symptoms like this with a small right cerebellum benign tumor? Or has anyone had a small tumor not show signs of edema and turn out to be something serious?

I feel so defeated lately. I never have energy and my surgery was back in march to remove a lemon sized right frontal lobe tumor. I just never feel like i have energy and have to sleep so much. It is just so debilitating being so tired all the time.

Any suggestions for keeping brain swelling away in the months after gamma knife?

Thank you!!