My son had a craniotomy done to remove a large tumor three months ago. Not till very recently we noticed that if he got upset, his emotions got intense fast and extreme then he started screaming crying and hitting me and his dad relentlessly (not other people). Almost impossible to calm him down. He’s never done that before. He is generally a very delightful kid and has a good temperament. At this point, I’m genuinely not sure if it’s normal for a growing 5 years old or if it’s behavioral changes due to surgery. Any guidance is appreciated. Thank you!

Husband just had 2 seizures (30 seconds each, within an hour). Craniotomy was 4 months ago and pathology was grade 2 Oligo (IDH mutant, 1p/19q codeletions). He was deemed to have a 95% or more resection.

He had a CT quickly to rule out brain bleeds/infections/etc. CT came back normal, which was a relief. Findings showed all expected post surgical changes and no acute concerns.

We were doing so well and these seizures caught us off guard. He is on Keppra so they increased dose. Anyone experience this? Trying not to be defeated, and be grateful there is no serious concern (such as hemmorhaging).

Good morning I had two brain tumors, now stabilized but I am losing my teeth (on the top one) and it is starting to seriously bother me in my life, a complex which has repercussions on my meetings, less so in my professional environment

I wouldn't want to say on the first date "hey I have two tumors coming with me so don't worry about my teeth!" But often I see that it is a hindrance, in the eyes of others it is clearly a lack of hygiene and even if stupid care is planned to fit me with dentures by then I have problems eating and all that weighs on me

People who have advice on what to do, meal... Meeting.... Meal+meeting?

THANKS

My 14 y/o has a suspected PLGG on her superior cerebellar vermis. She also has had syncope episodes. This week she had the TILT table test and her doctor said it is suggestive of POTS but not diagnostic of POTS. Her heart rate rose from 80 to 160 when she moved from supine to tilted up. Then dropped but stabilized. I have heard this is pretty common in pediatric cases. Her doctor is going to refer her to a dysautonomia clinic which I think will be helpful for her. Her cardiologist did not start her on meds which upset me, because right now she is on homebound from school because she keeps fainting. My goal is to get her back to in-person school. I am hoping her pediatrician will or the dysautonomia doctor will, but the wait time for that doctor is like 6 months (ugh).

The day after her Tilt Table Test, she told me she had an earache for two days, so we went to the doctor, because our life is doctors now. And her regular doctor was not there. She has fluid behind her right ear - effusion and bilateral retracted eardrums. She hasn’t flown or anything and doesn’t appear to have sinusitis or any type of cold. I’m guessing this is from the pollen invasion in Charlotte. Not sure. Anyway, poor kid can’t catch a break!

Her next MRI is in June and she will have her braces off by then. They will see if the tumor has grown. It was ill-defined 1.5 cm and t2 hyperintense and nonenhancing and they did not biopsy it or anything since it was an incidental finding. My dad, who is a doctor, is pushing me toward getting a second opinion when we get the new MRI in June. I see nothing wrong with getting a second opinion, but if it differs greatly from the opinion of our local Neurosurgeon then we will have some decisions to make. Where her tumor is there is a chance of posterior fossa syndrome, so I do think with lack of symptoms and the small size, wait and watch was the right choice even though it took me awhile to get to that place (and a lot of anxiety). Plus, I have never been a helicopter mom, and I feel like one now. I am in touch with the Pediatric Brain Tumor Association and that has been helpful.

Lots of love to you all. ❤️

Hi Y'all. I have a close friend who is looking for survivorship resources. He had grade three brain cancer at the age of 5, now he's in his 20s. He has been looking for any resources that help him manage his care, stay on top of appointments, and work on his health and longevity. I have pointed out stupid cancer and a few local nonprofits. I also found this platform www.pathway.care focused on survivorship and longevity medicine for childhood and aya cancer survivors. I wanted to see if any of y'all had any additional resources I could share with him and help him with.

I had a low grade glioma resected out in 2022 and I've been doing MRIs every 3 months since then to monitor the site. At first there was some flair at the site, but doc wasnt sure if it was scare tissue or remaining rumor, so we kept watching it. Well based on the latest MRI he's convinced he didn't get it all out and that it's growing. He's suggesting he go back in for a "clean up". He says it should be easier this time because he already has a surgical path. I guess my question is, for anyone who has had to re-operate, is it any easier the second time? Is the recovery time better or worse? I had some vision loss after the first time (its in the visual cortex) but my vision seemed to recover within a few weeks. I'm afraid he'll need to take out more good tissue and make the vision issues worse than last time (though I'm hopeful I will recover just as quickly). Anyone who's gone through this a second time and has some insight would be appreciated. Going through that the first time was one of the most difficult things for me, for a variety of reasons. I thought I could be all done with it but I guess that was just wishful thinking.

My partner might be looking at progression to subinsular/deep white matter area. We are waiting for another MRI to confirm. But neurosurgery had essentially rules out and chance of resection/biopsy due to the area.

Has anyone had tumours in this area and what did management look like for you. His original tumour was r frontal lobe so this is all new to me. Just looking for hope I guess because this new area doesn’t seem great.

Appreciate all of you ❤️

Hey all. I avoided this subreddit for a long time after my initial diagnosis back in 2021. I had 2/3 neurosurgeons tell me that my 2cm tumor showed no signs of metabolic activity and the blood-brain barrier was intact. So they put me on MRI's every 6 months for the first 2 years and once a year since then. The thought was that because I had no symptoms (it was discovered during a head CT scan for something else), that if it shows no signs of growth, then there was nothing that needed to be done about it.

My first neurosurgeon has a split practice with pediatric neurosurgery and he told me that he sees tumors like mine all the time that people are just born with and they never cause problems.

But after 4 years, my last MRI showed 1.5mm of growth. So far everyone in my current HMO is saying it's time for surgery. I'm getting second opinions from UCLA and City of Hope (I live in Los Angeles so I'm close to 2 of the top 10 ranked cancer centers in the country, so I have some luck).

My tumore is located in and partial diffused into my language and memory areas. Obviously, they are gonna run all the brain mapping tests to make sure, but the idea of losing language and/or memory is scaring the shit out of me. I don't take drugs or drink because I hate having an altered state of consciousness.

All of this is to say that I have started leaning heavily on this subreddit to get me ready for the trials ahead. If anyone has any best learnings or things to watch out for that they can pass on, I would be eternally grateful.

5 brain surgeries along with brain damage from swelling fragmented quite a few of my memories. It's odd, I still know math, science, and such but I have a hard time recalling my school days at all. I'm 37 so I guess maybe it happens normal people to some degree. But when I'm able go across the country to my home town, I feel really bad about seeing my old friends just because I have so few memories of them, and that's usually the conversation topic you end up at. I just don't know how to handle that. I feel like a completely different person than they grew up with. So I avoid it. I saw my family and that was weird enough, so I just avoided seeing my old friends at all. I just don't know how to handle it. Any advice? It's getting close to my trip back this spring. I mean sure I could explain it, but having to explain that to everyone just seems exhausting.

I had an mri showing a small (6mm) lesion on my thalamus that is suspected to be low grade glioma. I was curious if anyone else has been in a similar situation with a small lesion like this. How much and how fast do these typically grow? I know that low grade gliomas grow at varying speeds and that it is often very slow, but I wanted to hear some first hand experiences. I’m currently in the watch and wait phase. How much growth would need to happen before they consider treatment? And since this lesion is on my thalamus, what kind of treatment would be done (as I know the thalamus is typically considered inoperable)

My dad is 56 and has been battling GBM since end of may 2024, between surgery and one course of chemo/radiation unfortunately didnt work, his team of doctors advised him to stop treatment and enjoy the rest of his time so hes been in palliative care at home (refuses to go to hospital) since mid september.

We can see he is towards the end now as he sleeps atleast 20 hours a day, only eats one meal and drinks small amounts of water here and there.

He hasnt really followed the “usual” timeline so im interested to know if anyone has had a loved one pass in their sleep without having gone down the path of everything listed in the brain hospice timeline?

I honestly hope for his sake that he doesnt lose his mobility or anything and just passes in his sleep or during a nap because watching him go through this the last 10 months has been an emotional rollercoaster to say the least 💔

Ugh. Still dealing with the bloating and now weight gain with the Dex. I may have to stay on it forever to keep the inflammation down on the lesions. I’ve gained 10 pounds in 3 months. I DO eat more because the med makes me ravenous!! I eat pretty healthy for the most part.

So my question is, has anyone been able to loose some of the steroid weight while still taking it, and what did you do? Thanks allk

Glioblastoma stage 4,1-3 months left perdiction,doctors cant help,i considered some alternative staff such as blue metelyn, invermektin and forendezol i misspelled some of those ,but need some feedback..

Hallo zusammen, ich suche nach Erfahrungsberichten zur Neurochirurgie an der Charité in Berlin. Falls jemand dort behandelt wurde oder einen Eingriff hatte – wie war eure Erfahrung mit dem Ärzteteam, der Organisation, der Nachsorge etc.? Gibt es bestimmte Ärzt:innen, die ihr besonders empfehlen könnt? Würde mich sehr über ehrliches Feedback freuen – gerne auch positive oder kritische Punkte. Vielen Dank im Voraus!

⸻

Hi everyone, I’m looking for personal experiences with the neurosurgery department at Charité in Berlin. If you’ve been treated there or had surgery – how was your experience with the doctors, the organization, the aftercare, etc.? Are there any particular doctors you would recommend? I’d really appreciate honest feedback – both positive and critical. Thanks in advance!

Having my meningioma removed via craniotomy today. Thanks to you all for sharing your stories. Because you shared, I learned some options that led me to a much better doctor and a far better anticipated outcome. Keep sharing. It matters. Thank you all!

Getting my trans lab craniotomy done on April 15th. I’m so nervous and scared.

I just got told yesterday after a second MRI with contrast that I have a 1.4cm low grade glioma in my brain. Was not given much more information other than that, and I'm being referred to a neurosurgeon. They said that it looks benign and that given the situation it looks like the best I could ask for.

I have a bleeding Disorder so I don't even know if they would take it out right now, and honestly I'm terrified to look anything up and I was too shell-shocked to really ask any questions. We weren't even looking for a tumor when we found it.

Does anybody have any advice, or really just anything that they found helpful with coping or processing? Anything that helped you get through the day? Heck I'll even take any helpful questions that I should ask because I don't even know where to start and I'm afraid to Google anything.

Hi all, I was diagnosed with a brainstem glioma (on my medulla) 6 months ago. My neurosurgeon is not recommending treatment due to the location but I have multiple symptoms so I am seeking second opinions. I know everyone's insurance is different but I'm interested to know how this has worked for others. If you have sought a second opinion, has it been to a place that your insurance has referred you to? If it was a place you chose on your own and maybe paid out of pocket for the consultation, what do you do then with that information? If that neurosurgeon is "better" and you want to continue treatment with them, did you just tell your insurance that and hope they approve? As you all probably know, it's incredibly difficult to get insurance to approve of basically anything so I'm just interested to hear how this has gone for others.

I am working with the Brain Tumor Network but my hands are tied by insurance. I did get insurance to approve of a referral for a second opinion but it's not a place I was wanting to visit (though I am grateful for the opportunity for a second opinion). I was hoping to visit UCSF. I know I can pay the $1800 out of pocket for a zoom appointment with UCSF but what's the point if my insurance ultimately would never approve of treatment there anyway? Thoughts?

Hi all, I have awful symptoms headache, dizzyness, nausea, blurred vision.. and yet no one is concerned over my brain mri results. I am wondering two things. A) if you have had a pituitary adenoma and b) if you had surgery for removal how was this? Did it ruin your nose ?

Thank you and sending prayers to everyone

Hello all, this might be a bit confusing to follow and for that I apologize, I am confused myself.

I am a male in my early 20s who had a craniotomy around a month ago, and my surgeon removed a pretty large tumor, fully resected. Surgeon’s initial impression was a high grade glioma. Preliminary pathology and conversations between my oncologists and the pathology team @ UCSF maintained the belief of a high grade glioma. I was supposed to start radiation and tomolozide tomorrow, just had an appointment today to make sure my treatment plan was perfect and my mask fit for radiation…

I was prepared to fight this monster, come tomorrow morning but shortly after my radiation dry run I get a call from both my neuro and radiation oncologist saying that we are cancelling treatment and I am no longer going to be taking TMZ or Radiation, and my radiation oncologist advised us he will be hands off for the time being. Apparently, at the 11th hour the pathology team found that there are some things found through the examination of my tumor and consultation with colleagues that we should not start on treatment. Oncologists skirted around whether or not they still think it is a high grade glioma, which yesterday, they believed to be the case. They seemed very caught off guard and says such a thing is very uncommon. Additionally, they are sending my tumor to the NIH for second opinion, and expect it to be back in 3 weeks.

I am just wondering if anyone else has, or has heard of peoples treatment being cancelled at the last moment, or if anyone has not been given the standard of care for high grade gliomas. This whole thing is confusing the hell out of me. Part of me wants to believe that this is perhaps a low grade glioma since they said theres different treatment for what the pathologists see. Another part of me is nervous waiting 3 weeks at least for the NIH to give their input.

Any input would be appreciated!

Hi everyone, Firstly, sorry if my writing isn’t exactly great. I’m recovering from my craniotomy that was in my language area.

I just got my pathology report back. I have a pilocytic astrocytoma, which is a grade 1 tumor. Previously, it was thought it be a low grade glioneuronal tumor, which is generally also low grade. However, I’m confused by my genome report. It says I have a malignant neoplasm of the frontal lobe and is classified as a glioma. This is an excerpt from that report:

Cancer Mutations with Potential Clinical Significance: EGFR c.754C>T p.Arg252Cys KRAS c.181C>A p.Gln61Lys

From what I read, they tend to be more common in malignant cancers, not necessarily just low grade brain tumors.

Does anyone else have something similar? I’m Relieved about grade 1 of course, but I’m confused about the pathology

I had a craniotomy in fall of 2023. I healed well and only recently have I started showing growth again so I feel it’s important for context to note that I have had zero treatment- no radiation, no chemo, no vora. I plan to start soon but it’s been a chaotic time in my life- I found out about the regrowth the week that I lost my job (and insurance) and then since then I got another job that worked me to the bone- I actually had to quit my therapy 🥴 and was barely able to keep up with the normal stuff. I WILL be looking to start vora soon, I just had my healthcare with a new, much more flexible job reinstated.

Moving on!!

I am getting cramps in my feet that are so crazy. It’s not like a regular Charlie horse, it feels like it extends to my whole feet. It will keep me up at night when it happens and it impacts me for hours at a time.

I assumed this was a nutritional thing or something and went to my primary care to figure out how to make it better. Since shortly before the surgery I’ve lost like 20 lbs (and I was a size two before that so it’s not as minor as it seems). We did a full blood panel though and it looks as though everything is completely fine. There’s nothing to explain the weight loss or the cramping.

I’ve never really given it much thought but before I start looking into magnesium supplements or upping my already pretty high water intake to no avail- can this be a brain surgery thing? I recovered from surgery beautifully but by the time I had it, the tumor was pushing back into my motor…. Area??? Before that it had always been causing behavioral issues only but I ended up having it removed because I would lose feeling and control of my feet and fall over, and they said it was tumor related. So I guess it stands to reason that to remove it they would have had to be in that general area.

And if it can be caused by that- is it even… fixable? Or not worth much time confirming something with no treatment.

Our brain tumor treatment copay assistance program is now open to new (and renewal) patients again, but will probably close soon. It covers: Optune, Avastin, Temodar and Gleostine and their generics. Go to braintumorcopays.org for details and to apply.

My mom was diagnosed with PCNS Lymphoma. I be been trying to pay off her credit statements and find access to her banks through power of attorney, but I can’t find the banks she used. How have people managed funding the treatments and bills post diagnosis. My mom no longer remembers her banks or usernames and password so I have no idea where to go or what to do.