r/braintumor

Hi everyone. My wife yesterday was told by her doctor that she is going to need a second brain surgery this fall to move two more tumors at the top of her head.

The surgeon acts like this is a simple and easy procedure, but I also think he’s a good salesperson and never acts like get a big deal. But who else has gone through a second brain surgery personally or with a partner and I’m curious their experience if it was easier or just depends on the situation. Thanks so much.

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 currently a 23-year-old male who recently graduated from university after being diagnosed at 22 with an extremely rare brain tumor called high-grade glioma with pleomorphic and pseudopapillary features (HPAP). Because this tumor is so rare and newly recognized, I wanted to share my story to bring some attention to it and hopefully hear from others who have lived with gliomas long-term.

(I have questions at the bottom, if you're not too interested in my long history but still have experience with gliomas. Please feel free to scroll down to where my question section is and answer freely -- thank you!)

Before February 2025, I was an active, healthy 22-year-old. I was studying at university, going to the gym almost every day, traveling, and doing pretty much everything you would consider normal for someone my age. That changed in mid-February when, shortly after finishing an interview for an internship, I suddenly felt one of the worst pains I had ever experienced on the right side of my head. I described it as feeling like a metal pole had pierced through my skull. I also lost coordination and spatial awareness on the left side of my body and started bumping into things around my apartment. I wasn’t sure what was happening, so I slept on it and felt mostly better the next day, but my parents, who were on vacation at the time, insisted that I go to the hospital. I reluctantly called an ambulance from campus outside my main academic hall—but only after going to class first because, apparently, academics still took priority while my brain was bleeding.

At the hospital, CT and MRI scans showed a brain hemorrhage associated with a right posterior parietal lesion (an abnormal area in the right rear portion of my brain with bleeding around it). Doctors couldn’t determine what had caused the bleed. Possibilities included an AVM (an abnormal connection between arteries and veins), cavernous malformation, tumor, or another vascular abnormality. Since there was no immediate danger and the blood products made the underlying lesion difficult to see clearly, the recommendation was to wait and repeat the imaging. About two months later, in April 2025, another MRI showed the lesion was essentially unchanged in size but easier to visualize as the blood resolved. There was no significant enhancement or surrounding edema. Doctors still had no idea what it was, and one possibility was a cavernous malformation that had bled during a period when I was under significant stress and using a lot of stimulants like caffeine and Adderall. Since the imaging was inconclusive and I had no ongoing symptoms, we continued watching it.

Then came June 2025. I was attending orientation for the same internship I had been interviewing for when the original bleed happened—apparently this company and my brain were not getting along. After the first day of orientation, I returned to my hotel room and began feeling the same left-sided wobbliness and altered perception I had experienced during the hemorrhage. I knew something was wrong. I managed to sit on my bed, call 911, tell the dispatcher my hotel and room number, and then started seeing flashing lights before falling to the floor. I had a seizure, which became the second major neurological event associated with the lesion. Another MRI now described a primarily cystic right parietal mass. Most of it contained complex cystic fluid, while along the posterior-medial portion there was a smaller solid soft-tissue component showing mild patchy enhancement and imaging changes corresponding to calcification on CT. In simpler terms, most of the lesion was cystic, with a smaller solid tumor-like component along one side. There still didn’t appear to be dramatic growth compared with April, although measuring the cystic portion complicated the comparison. At that point, surgery became the clear next step.

In July 2025, I underwent a right parietal/parieto-occipital craniotomy, and my neurosurgeon achieved a gross-total resection (GTR), meaning all visible tumor was removed. Before surgery, because the lesion was well circumscribed and had shown very little obvious growth over several months, some of my doctors thought it could potentially be a relatively low-grade tumor, possibly even around Grade 1. Then the pathology came back, and things became much more confusing. Initially there was concern for glioblastoma because the tumor was IDH-wildtype and H3-wildtype, and one early report raised concern for EGFR amplification. However, two additional pathology/molecular evaluations did not confirm EGFR amplification. Further testing showed no TERT promoter mutation, no classic +7/−10 glioblastoma-type copy-number signature, no CDKN2A/B homozygous deletion, no microvascular proliferation, no necrosis, and TP53/p53 was wild-type. Despite lacking many of those classic high-grade features, the tumor had high mitotic activity and an elevated Ki-67 index (both indicate that a significant proportion of the tumor cells were actively dividing), as well as a pathogenic RB1 alteration and a PTEN alteration reported at relatively low allelic frequency. So my doctors were calling it high-grade because of its proliferative activity, while at the same time many of the classical high-grade features were absent. It was also well circumscribed rather than obviously diffuse/infiltrative and had shown little radiographic growth for roughly six months before surgery. This created some very conflicting opinions, even among doctors at major brain tumor centers.

It wasn’t until the end of August 2025 that additional testing through the NIH, including DNA methylation profiling (a molecular test that identifies tumors based on patterns of gene regulation), finally gave us an answer: high-grade glioma with pleomorphic and pseudopapillary features (HPAP), with a methylation classifier confidence of approximately 0.99. After about seven months of uncertainty, a brain bleed, a seizure, surgery, multiple pathology reviews, and not knowing exactly what had been growing inside my head, we finally had a name for it. HPAP is an extremely rare and newly recognized glioma, with only a very small number of cases described in the medical literature. Newer research has even proposed dropping the “high-grade” wording and calling it glioma with pleomorphic and pseudopapillary features (GPAP), with the idea that some of these tumors may behave more like an intermediate-grade glioma. Because I had a gross-total resection and because of the unusual biology of the tumor, my doctors and I decided not to immediately pursue radiation or chemotherapy and instead continued close MRI surveillance.

I’ve had MRIs approximately every three months since surgery, and things initially looked good. However, my most recent MRI in August 2026, a little over a year after surgery, showed small nodular FLAIR-hyperintense areas along the resection cavity (areas that appear brighter on a particular MRI sequence and can represent abnormal tissue, gliosis/scarring, or tumor). Importantly, these areas are non-enhancing, do not show restricted diffusion, do not show convincing increased cerebral blood volume on perfusion imaging, do not show significant choline elevation on MR spectroscopy, and have no lipid or lactate peak. The radiologist did not definitively call this recurrence. The report said the abnormalities were not significantly changed from my June 2026 MRI but had slowly increased when compared with scans dating back to January 2026, and recommended continued follow-up imaging. My neuro-oncologist, however, is concerned that this could represent a very slowly growing recurrence. Based on the tumor’s overall behavior, my neurosurgeon has described it as behaving more like an intermediate Grade 2–3 glioma, possibly somewhere along that spectrum rather than like a conventional rapidly progressive Grade 4 glioma. At this point, some of my doctors are concerned enough about recurrence that radiation may be my next treatment. The abnormality is currently so small that my neurosurgeon does not favor another operation because there is a risk of not being able to reliably identify and remove something that tiny.

I honestly don’t know where this long road is taking me or where it ends. I wanted to share my story because my diagnosis is extraordinarily rare (I am 1 of maybe 60 confirmed cases)  and because, at the end of the day, this is still a glioma and I’m dealing with many of the same questions and fears as everyone else in this community.

Question Section:

Are there any long-term survivors here—10, 15, 20+ years—after being diagnosed with a Grade 2, 3, or even Grade 4 glioma? Have any of you had a recurrence and then gone on to have many more years of stable disease? If you received radiation, was it proton or photon radiation? How did you handle treatment, what short- and long-term effects did you experience, and how do you feel about your long-term prognosis now?

I’m sitting here writing this after work at 23 years old, still kind of mind-blown by where my life has taken me. Not long ago I was mainly worrying about university, internships, going to the gym, traveling, and what I wanted to do after graduation. Now I know way more than I ever wanted to know about methylation profiling, Ki-67, perfusion, spectroscopy, and FLAIR hyperintensity. I don’t know what the future holds. I hope I make it well beyond 45, and I hope I have decades of life ahead of me. I hope everyone reading this does too. To everyone dealing with a brain tumor—whether you’re newly diagnosed, years into treatment, stable, dealing with recurrence, or supporting someone you love—I wish you the absolute best. Go live, go conquer, and accomplish everything you’re capable of. Thank you for reading my very long story.

Hi all,

Does anyone here suffer from gastrointestinal symptoms as a result of this tumor? Symptoms for us started a few months prior to diagnosis & are unrelated to surgery, treatment or medication.

Thank you all

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?

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.​

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.

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?

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!

В мае была операция , удалено 80-90 % опухоли размером 7.5 на 5.5 см. Потом была лучевая 30 процедур 60 гр. плюс темозоломид 160 мг каждый день. Через две недели после окончания лучевой сделано МРТ . Вроде неплохое , но напрягает что по контуру резекции есть накопление контраста , но кровотока в области нет . Что скажите ?

Клинический Основной
Астроцитома (WHO Grade 3, IDH-мутантная) теменной доли левого полушария головного мозга. Микрохирургическое удаление больших размеров новообразования теменной доли левого полушария головного мозга с применением нейрофизиологического мониторинга от 21.05.2026 г. Стереотаксическая радиотерапия СОД=60 Гр за 30 фракций с одновременным приемом Темозоломида 160 мг/сут 22.06.2026-31.07.2026 г. (C71.3); IV стадия;
Описание
04.0723T
На МР-томограммах головного мозга, выполненных в режимах Т2, T2-FLAIR, DWI, Т1 и FSPGR до и после в/в введения контрастного препарата в левой теменной доле парасагиттально сохраняется послеоперационная ликворная полость, распространяющаяся на левые отделы валика мозолистого тела, окружённая зоной перифокального гиперинтенсивного МР-сигнала на Т2 и T2-FLAIR. Масс-эффект отсутствует. Других изменений МР-сигнала в веществе мозга не определяется. Эпидурально на уровне оперативного доступа скопление жидкостного содержимого (изогипер- на Т2 и
FLAIR, изо- на Т1) толщиной слоя до 6 мм.
Субарахноидальное пространство в конвекситальных отделах выражено неравномерно, не расширено.
Желудочковая система не расширена, боковые желудочки асимметричны (D<S), задний рог левого бокового желудочка подтянут к зоне послеоперационных изменений.
Хиазмально-селлярная и пинеальная области не изменены.
Срединные структуры не смещены.
Внутренние слуховые проходы симметричны, не расширены.
Миндалины мозжечка расположены выше уровня большого затылочного отверстия.
Пневматизация придаточных пазух носа, ячеек сосцевидных отростков и пирамид височных костей не нарушена.
В режиме DWI патологического повышения МР-сигнала в веществе головного мозга не выявлено.
При проведении ASL-перифузии в области вышеописанного образования признаков повышения кровотока не отмечается.
При внутривенном введении контрастного препарат отмечается его накопление по контуру резекционного дефекта, оболочками в зоне хирургического доступа (п/о реакция). Иных участков патологического накопления не определяется.;
Заключение
Состояние после комбинированного лечения диффузной астроцитомы (grade 3) левой теменной доли.

Hi all,

Does anyone have any tips on helping to improve concentrating / focus?

My family member is unable to concentrate on anything and it's severely impacting their quality of life. We're only 1 month post op, however we really do need to improve their quality of life.

Thank you all

I’m wondering if anyone else who has dealt with a brain tumor or brain surgery has experienced significant mood changes afterward, particularly anger, irritability, or getting frustrated much more easily than before.
I’ve noticed that I can become irritated or angry over things that normally wouldn’t bother me, and sometimes the intensity of the emotion seems disproportionate to what’s actually happening. It can be frustrating because I recognize that I’m reacting differently, but in the moment it can be difficult to control.

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.

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?

In May, I had my usual follow up scan and unfortunately it was back, but it was back faster than usual, and without surgery they can't confirm that it's moved up but it's more than likely (previously AA3).

Fast forward, I've been doing 3 weekly Avastin infusions and 6 weekly chemo tablets (Lomustine) and continue to do this (at least chemo) until the end of the year.

FINALLY had my follow up scan to see if the treatment was working and IT IS!!! My husband and I are so relieved, we know it is far from over, but oh my gosh the relief knowing it is working.

So yes, it's not ideal but if it keeps me alive I will take that 3 hour, maybe longer some days round trip (thats just the drive) so basically a whole day but if it keeps me around for my 2 and 5 year olds with my hubby, I don't mind.

I thought I'd spread the joy ❤️

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 ?

Hi everyone

A family member of mine, a young adult, has recently been diagnosed with a grade 3 oligodendroglioma. We had a very successful debulk and the prognosis is fairly positive with treatment.

Our concern now moves on to quality of life. My family member has no real physical symptoms, however there has been a big shift in personality, decision making and mood.

Does anyone have any info on the long term symptoms and quality of life? Can symptoms improve post treatment or are symptoms likely to remain?

Thank you all