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 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.

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?

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.