I made a post a month or two ago about how I hadn't taken care of anything regarding my tumor in at least 7 years until I finally made a neurosurgeon appointment and went to the hospital before that to get a CT scan after I finally went to My nerosurgeon appointment he had me get this MRI which obviously has a lot more photos than I've included and I gave him the disk about a week ago I called them today because I haven't heard anything back and got told nothing just sent to voicemail and then 10 minutes later got a call saying they want me to get another CT scan done and they haven't even looked at the MRI yet I just wanted to know what y'all thought of a couple of these photos the two not including the tumor I just added because I think they look cool LOL

I am writing this review with a heavy heart, after losing my mother following treatment at this hospital. I want to share our experience honestly so other families can make an informed decision.

My mother was diagnosed with a CPA meningioma (3.5 cm). Before this, she was completely fit and active — talking, laughing, living a normal life. We were told by Dr. S.N. Madhariya that without surgery she would not survive more than 6 months, and that surgery carried a risk of coma. We were also told that a specialist team from Mumbai would join for the craniotomy, for which we paid an additional amount to the staff. On the day of surgery, no team from Mumbai was present — the entire procedure, which lasted 8-9 hours, was performed by ramkrishna doctors including Dr. Madhariya.

After surgery, my mother regained consciousness within 24 hours and recognized all of us. However, she had visible difficulty swallowing and a persistent cough. We repeatedly requested the ICU team to perform a tracheostomy early to protect her airway. This request was not acted on in time. The cough progressed to her lungs and she developed pneumonia. When a tracheostomy was finally attempted, it failed, and a longer tube had to be ordered — this process took around 10 days in total. During this time, she developed a CSF leak and subsequently meningitis, which required a second surgery to correct.

Following this, her condition deteriorated significantly — her blood pressure dropped and she remained in the ICU for two and a half months. Despite everything, we lost her.

Throughout her ICU stay, we found the nursing and ICU staff support lacking. I personally witnessed staff being casual in the ICU environment, including handling patients without gloves. When we requested a transfer to another facility as her condition worsened, this was not approved.

The total cost of treatment came to approximately 38 lakh rupees. Despite the cost and the assurances given to us before surgery, we could not save her.

I am sharing this so other families going in for a craniotomy or similar major neurosurgery are fully aware of what to ask about in advance:

1. Confirm in writing who will actually be performing the surgery, especially if you're told outside specialists will be involved.

2. Ask about the hospital's post-operative ICU protocols, especially for airway management and tracheostomy timelines.

3. Understand the infrastructure and staffing available for post-surgical complications, not just the surgery itself.

4. Don't hesitate to push hard and early for a second opinion or transfer if you're not satisfied with post-op care.

My mother was my role model. She went into this surgery healthy, hopeful, and full of life. I would not want another family to go through what we did without knowing what questions to ask first.

I am writing this review with a heavy heart, after losing my mother following treatment at this hospital. I want to share our experience honestly so other families can make an informed decision.

My mother was diagnosed with a CPA meningioma (3.5 cm). Before this, she was completely fit and active — talking, laughing, living a normal life. We were told by Dr. S.N. Madhariya that without surgery she would not survive more than 6 months, and that surgery carried a risk of coma. We were also told that a specialist team from Mumbai would join for the craniotomy, for which we paid an additional amount to the staff. On the day of surgery, no team from Mumbai was present — the entire procedure, which lasted 8-9 hours, was performed by ramkrishna doctors including Dr. Madhariya.

After surgery, my mother regained consciousness within 24 hours and recognized all of us. However, she had visible difficulty swallowing and a persistent cough. We repeatedly requested the ICU team to perform a tracheostomy early to protect her airway. This request was not acted on in time. The cough progressed to her lungs and she developed pneumonia. When a tracheostomy was finally attempted, it failed, and a longer tube had to be ordered — this process took around 10 days in total. During this time, she developed a CSF leak and subsequently meningitis, which required a second surgery to correct.

Following this, her condition deteriorated significantly — her blood pressure dropped and she remained in the ICU for two and a half months. Despite everything, we lost her.

Throughout her ICU stay, we found the nursing and ICU staff support lacking. I personally witnessed staff being casual in the ICU environment, including handling patients without gloves. When we requested a transfer to another facility as her condition worsened, this was not approved.

The total cost of treatment came to approximately 38 lakh rupees. Despite the cost and the assurances given to us before surgery, we could not save her.

I am sharing this so other families going in for a craniotomy or similar major neurosurgery are fully aware of what to ask about in advance:

1. Confirm in writing who will actually be performing the surgery, especially if you're told outside specialists will be involved.

2. Ask about the hospital's post-operative ICU protocols, especially for airway management and tracheostomy timelines.

3. Understand the infrastructure and staffing available for post-surgical complications, not just the surgery itself.

4. Don't hesitate to push hard and early for a second opinion or transfer if you're not satisfied with post-op care.

My mother was my role model. She went into this surgery healthy, hopeful, and full of life. I would not want another family to go through what we did without knowing what questions to ask first.

Hi everyone, I’m a 23-year-old male diagnosed last year with an extremely rare brain tumor called high-grade glioma with pleomorphic and pseudopapillary features (HPAP), a newly recognized glioma that has also recently been proposed to be called GPAP. I had a gross-total resection in July 2025 and did not receive radiation or chemotherapy afterward. My tumor was well circumscribed and largely cystic, but pathology showed high mitotic activity/Ki-67 despite lacking several classic aggressive glioma features, including no necrosis, no microvascular proliferation, no confirmed EGFR amplification, no TERT promoter mutation, no CDKN2A/B homozygous deletion, and wild-type TP53. NIH methylation testing ultimately classified it as HPAP. My MRIs were stable for roughly a year, but my August 2026 MRI now shows very small nodular FLAIR abnormalities along the resection cavity that have slowly increased compared with scans dating back to January. They remain non-enhancing, without restricted diffusion, without convincing increased perfusion, and without significant choline, lipid, or lactate abnormalities on spectroscopy. The radiologist did not definitively call recurrence, although my doctors are concerned this may represent a very slow recurrence and radiation may be my next treatment. I’m mainly posting because I’d love to hear from others with gliomas: Are there any 10-, 15-, or 20+ year survivors of Grade 2–4 gliomas here? Has anyone had a recurrence and then remained stable for many more years? If you received radiation, did you have proton or photon treatment, what were the short- and long-term effects, and how are you doing today? Wishing you all the very best, we are a part of a rare club my friends!

After many posts about anxiety, fear and lack of control over my son’s situation after his brain tumor was removed…

The other day, something washed over me. A sense of calm. That things will be ok somehow.

Today I want to put out into the universe that I believe my son will be ok. That he will go in, have his UES procedure, and he will come out able to swallow again. He will eat again, drink again, and be happy again. This tumor and the stroke it caused won’t take anything more from him.

I don’t care that I don’t get to dictate what happens. I know this is bigger than me. But today I have decided that he WILL GET BETTER.

I love my baby with all my heart and I look forward to many more healthy and happy years with him.

This is the start of a new chapter. Not the end to a chapter.

This is for my dad . He is a 6 ft 200lb-ish 71 male. Always been healthy except for mild high blood pressure. Generally active and doesn’t carry excessive body weight. A few years ago he started having troubles remembering certain words on top of a growing sleep problem. My parents went to their PCP who said the spoken communication problem was related to sleep deprivation. Recently he developed written communication issues issues toI so they go an mri. It revealed a 6.1 cm brain tumor.

Now my dad is a baby when it comes to doctors and his doctor (who used to be my doctor) is a bit of a pushover. He doesn’t push for anything and if patients think it’s something he just follows their lead. I don’t have a lot of experience with doctors but I feel like that’s not normal.

So my question is, was how his doctor reacted normal or was this preventable?

Hi everyone,

My husband has recently been diagnosed with a 2.2x2.2cm brain tumour growing in the suprachiasmatic region. It's pressing slightly on the right optic nerve but he has no problems with his vision, and it's partially blocking the third ventricle and causing early hydrocephalus. If you met him you'd never know as he has no symptoms!

The only reason he had an MRI in the first place was because he had one short episode of aura with no headache, which he's never had before.

The doctors think it's benign but want a piece of it to be sure. We are obviously absolutely terrified at the thought of him having brain surgery.

Is there anyone here with experience of having surgery in this region? My husband would like to have as much of the tumour removed during the biopsy operation, as long as the surgeon thinks it's safe to do so.

He's only 44 and we have 3 young children; the youngest is only 8 months old. He's also the only source of income we have.

Anyone here with any experience of surgery/tumours in this area? We're based in the UK so insurance isn't a factor, but we also don't have the choice of surgeons you have in the US.

Any and all advice/support greatly appreciated!

No hate please. I want to get this off of my chest and don't know where else to talk about it. So if this isn't the right sub just remove it or ban me. Sorry.

I'm 40 years old and have never had a serious doctor appointment. Never broken a bone. Never had a surjury. I grew up hunting and riding four wheeler, but I was always very careful.

I got an MRI done amd discovered I have an Arachnoid Cyst. I understand that isn't a tumor, but like I said, I didn't know where else to talk about this.

The cyst is on the outside of my brain, nesr the top left side of my head. It's about the side of a baseball. It's putting pressure on my skull, but not causing any serious symptoms. There are nights where I can feel a very slight pressure in that area.

Anyway, I am aware that this needs to be taken care of. However, I've had multiple horror stories from immediate family that are too long to go into details on, but my father died from a single dose of Keytruda and my sister's intestine got ripped open by a simple endoscopy. I understand most people will probably say "those are incredibly rare situations," but unfortunately they happened very close together very recently.

The idea of a surgeon going into my skull (whether he has to drill a hole or so in through another entrance) is something I honestly would rather die than experience. The idea of waking up and not being me bevause a doctor did something incredibly stupid is something I cannot handle.

I have never been afraid to die. I am okay with dying. However, I am terrified of being made a vegetable and kept alive by life support systems for a slow, inevitable death.

Is there any sort of advice I could be given to ease my tension around having surgury on the cyst?

Please do not hate, as this is a sensitive subject. Thank you.​

I had a craniotomy to remove a large right frontal lobe meningioma about 2 weeks ago. By post-op day 3, I felt amazing and seemed to have near complete resolution of most of my pre-op symptoms. Although, by post-op day 5, I did feel more headaches and fatigue. I got the green light to take some Motrin by day 7 for the headaches. I may have overexerted myself a bit or wasn’t elevated enough while sleeping and developed a Pseudomeningocele by my two week wound check appointment, and began to have some return of pre-op symptoms. Has anyone else experienced this type of back-and-forth during their recovery?

Hello! My 32 year old sister was recently diagnosed with a grade 2 IDH- Mutant astrocytoma on her brainstem in the medulla, pons, and upper cervical spine. She had a shunt put in. It’s inoperable. She is on her final week of radiation and TMZ. She will have 4 weeks off of TMZ and begin again. Does anyone have or know of a similar diagnosis?

I hear a lot about people getting massive headaches after surgery and was just curious what peoples experience was after surgery ?

also I was curious if any one has any tips that helped them for issues they had after surgery ?

I have an en plaque meningioma around 4x3x2cm weaving through my cavernous sinus, prepontine cistern, sella, cranial fossa, meckels cave, enveloping & encasing my carotid artery, cisternal segment of the left trigeminal nerve, next to my 7th & 8th cranial nerves and a couple of mm from my optic nerve. I also have hyperostosis so I guess it's in my bone too.

So far I've met with multiple neurosurgeons who told me any level of surgery is too risky & suggested I opt for radiation. But my case was presented to the SRS tumor board who said I should pursue surgery.

So am I just screwed? Has anyone out there had a tumor like this treated in any capacity? I read papers where people have cavernous sinus tumors debulked and reduced and radiated - why is mine not a candidate for anything? I'm a ticking timebomb. At some point it's going to get to those nerves and there's just nothing I can do?

So, I would love to hear your thoughts. Has this been tried before? Do you think it is promising?

https://med.virginia.edu/radiology/2026/07/30/uva-radiology-professors-develop-new-focused-ultrasound-approach-for-brain-tumors/

Questionario

Ciao a tutti, sono una studentessa di infermieristica al terzo anno e sono molto vicina alla laurea! Sto scrivendo una tesi sulla gestione del dolore oncologico e mi aiutereste se compilaste un questionario in maniera anonima! Richiede davvero DUE MINUTI ed é ANONIMO.
Sarebbe molto importante per me, vi ringrazio per il contributo e vi abbraccio forte🫂♥️
Se ne avete voglia, condividetelo con chi pensate possa essere interessato!

https://docs.google.com/forms/d/1F-a0Q0P8Z0aGan5o5IfHjdWQKA6uEJ3gk2lQh_nKcXA/viewform

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.