In summer last year, I was diagnosed with a stroke after weeks of nonstop headaches and fatigue. I went through so many exams and spent 2 weeks in the hospital, having doctors experiment on me to try and figure out what might've caused it. After not being able to figure it out, they just dismissed me, They sheduled for a check up mri which is apparantly normal to see if the spot that shows up on the mri has dissappeared or at least went back a bit. Well it didn't change a bit. So I was sent to a different hospital. after another mri they told me they think it might be a tumor and they want to do a biopsy. They were right. It isn't dangerous yet, and would be easy to remove. Only problem is that it's in such a difficult spot, that removing it could potentially paralyze me. So, I was given a 6 year plan. Watch and wait, they said. I now have a check up mri each month.

Now, it's been difficult for me. I recently turned 18, so I'm still in school. The headaches make it incredibly hard for me to study. Teachers show little to no compassion. A few months ago, right after getting out of the hospital after surgery, I took my geography exam that I tried studying for during my stay in the hsopital. Obviously, I failed. The teacher went mad infront of the whole class, calling me lazy and telling me I need to finally get off my ass. It just felt horrible. After telling my step mom, she agreed with the teacher.

The most difficult thing to deal with has been the invalidation. By others and by myself honestly.
Every time the subject comes up, I'm told how lucky I am that it's not dangerous yet. That I should be grateful. And that I should not complain since others have it way worse. I know that. I really do. Still it feels bad to be told that, after months of struggling. I have constant headaches, they don't go away, ever. Sometimes they're so bad I have to lay down and just end up crying for hours. meanwhile all the people around me can focus on are my grades, which have been going down ever since. I know I'm lucky, I know others have it worse. It still feels bad to have that constantly thrown in your face whenever I mutter even a word about what I'm experiencing.

Last week I had the worst paranoia attack ever and deleted everything. Every post ive ever made and my account itself.

Today hit me hard, I have a brain tumor but a trip to the ER last night and speaking with my doctors has me feeling so low. It doesn’t help that I got dumped over a month ago either and then found out I have a brain tumor after it. I knew something was wrong for a while, family and friends noticed my personality changing over time and I definitely know it affected my relationship. I have a migraine every single day, I’ve been bed ridden for months now. I have to start using a walking cane because I can’t keep my balance. In conversations I suddenly stutter and get brain fog. I had to stop going to school. I’m only in my mid 20s, I used to enjoy life, I used to feel alive, I used to have a spark. Now I have nothing, I feel like my soul is stuck in a body that I no longer own. I was told I could probably never have my own family, to let go of specific dreams for the time being. I will probably never find love or have that real true love that I’ve always wanted since I was little, as people are more likely to leave someone who is ill. I’m tired of hearing people tell me it will get better. I’m so tired, all I can do is cry. I was in the ER the night before for several hours due to a severe allergic reaction to medication, the only movement I get is going to the ER. At this point I know exactly how many chairs are in the waiting room and which ones I prefer to sit on. I’m supposed to go on a trip next week but my doctor doesn’t think I should go because I’m not stable enough. This is breaking me, it also doesn’t help that I carry this burden alone because my parents are elderly and would die if they heard my diagnosis. I told my doctor I’ll go on my trip but we are all scared, I was told to try and purchase insurance but I don’t qualify due to my condition being unstable. Life is so cruel and unfair. Something is always happening to me to the point I’ve questioned if I’m even meant to find enjoyment anymore. For years I was gaslighted medically until my symptoms and health got severely worse, and now I feel like nothing.

Hey everyone, I’m 31 yo F. I’m having a left cpa meningioma surgery on 28 april. It’s close to the hearing and balance nerve and not touching the brainstem yet. The biggest part of the tumor is 17 cm.

I’m managing my fear relatively fine but sometimes I get lost in what ifs and possible side effects.

My surgeon said I might have a 20% hearing loss on the left side and have weak face muscle control though unlikely.

Wish me luck.

I wanted to share a link to this excellent article with you. I was not prepared for the "non-physical" changes, and found this article very insightful. Maybe you do too!

https://www.barrowneuro.org/for-physicians-researchers/education/grand-rounds-publications-media/watch-neuroscience-grand-rounds/preparing-patients-possible-neuropsychological-consequences-brain-surgery/?fbclid=IwY2xjawJjXa9leHRuA2FlbQIxMQABHnGa0M1XWdzLGA7ezgJ8ID-Tk_xyAb0gry4ymVvkiGRmWRK5faDb2SAnmsab_aem_PRHOKAYqHzQggYInv6x3fw

Hi everyone! As of yesterday I just found out I have a brain tumor. I had an MRI due to optic neuritis along with left extremity tingling, visual changes, pulsatile tinnitus, and headaches. The mass is approximately 5.9 x 5.4 x 5.3, so quite large. They believe it is a meningioma, but obviously won’t know until a biopsy. The neurosurgeon said I can always go to a more well known hospital such as Vanderbilt or I can stick with him for surgery in 2 weeks.

I think the only reason I have considered going elsewhere is that he believes my symptoms are related to another neurological condition and wishes for me to follow up with my neuro to investigate. I honestly don’t know what else it could be as the MRI only reported a mass with intracranial hypertension which they indicated is likely a result of the mass. I also have talked to medical professionals I know personally and they say they have heard good things about this neurosurgeon.

So my question is, should I just go through with surgery in 2 weeks, or prolong it and seek another opinion?

I have EVERY confidence in my surgeon - he is world renowned. I am a physician, and was an attending at the university that the procedure will be happening at.

BUT

I am scared. Last night I was awake thinking about the flap that will be created, the bony window and what will be done.

I wrote my living will to sign (which has my older son in particular fully freaked out).

I am not wavering in the decision, but I am scared.

ETA: Tuesday is the 15th - tax day - how ironic.

Just had my pathology test back and it says I have a pilocytic astrocytoma grade 1 on my optic nerve, they removed as much as they could but it wasn't all of it, what's you experience with them??

Hi everyone! I am 24f and back in 2021 I had a CT scan done of my head due to a fall.

Yesterday I was going through old medical test results and found that in this CT scan they found a 2mm possible colloid cyst but I was never told about this. I currently have no health insurance and won’t for another 6-8 months. I thankfully have the financial means to afford self pay but I’m unsure if it’s warranted that I see a neurologist now or wait?

I’ve seen a few people post about colloids in here and I’m just wondering everyone’s experiences and symptoms? Since about 2022 I’ve had frequent migraines that affect my vision and just vision problems in general, blurriness, floaters. No other notable symptoms other than maybe some brain fog but I am a mom to 2 and have a busy schedule.

I'm considering a buzz cut before my craniotomy. I'm not all that attached to my hair and I feel like it would be easier to manage post op. I would appreciate hearing from folks about their experiences with this :)

TIA

7 months ago I had a 5cm meningioma resected. All in all outcome was good but I was warned of possible nerve damage to the nerves controlling tongue and throat, and indeed that happened. I have partial left side tongue paralysis and complete left larnyx paralysis. They wanted to wait 6 months for any recovery, but there has been none. As my vocal cords can't press together, I can't make much sound, so have a raspy croak for a voice.

Tomorrow I have a left laryngeal thyroplasty, which means they will cut a hole in my neck, and insert a plastic filler piece to push my immobile left larnyx against the working right. This should allow me to make sounds. I'm told that with luck, it's completely effective, my voice will be almost as good as before.

I will be awake for this. I have to be as they will adjust the filler and ask me to speak and stop when it's maximal effect.

Wish me luck. Just another fun gift from tumorland I guess. I'll report back tomorrow on if I get my voice back. The fix is immediate.

Surgery done. But my throat feels like I took a roundhouse from Colin McGregor.

It's too painful to speak, and I can't swallow without much pain. But I can tell from my short utterances that it sounds much better.

I'm hungry as hell but no way I can swallow anything. Doc gave me a bottle of oxys so just took one waiting fir the effects.

I'll report in a day or two on how voice sounds.

Thanks for the good vibes !

For whoever needs to hear this. This picture was taken today and my beautiful hair is mostly gone probably forever. However I am learning that you need to love yourself no matter what stage you are going through. I know life is really tough for a lot of you but I just want to remind everyone reading this to take a minute to love yourself no matter what. Don’t forget to keep living your life no matter what situation you are in. Also if anyone needs a friend or just wants to vent I’m available.

I had surgery on the 14th, since then I've been taking levetiracetam and washing my head with pervinox soap, I feel like more hair is coming out when I shower than before, it's not coming out in chunks but still it's falling more than before the surgery. Idk if it's the meds, the stress of waiting for the pathology test results or not being able to wash properly with soap, my hair feels oily and it's falling a bit. It's very short cause I had a buzz cut before surgery and I really wanna grow it out, any of you had this happen?

21 days post op my doctor finally removed my stitches, in a week I can stop taking my anticonvulsants and start showering with normal shampoo!!!! Recovery is going great

My cat scan came back with a 1.2cm “focal dural calcification” that they suspected was a meningioma. Then I had an MRI with contrast and there was nothing to be seen. Has this happened to anyone before? Does an MRI negate can scan results? Waiting to see my drs but I’m so frustrated bc I thought that I at least had something to explain my symptoms. Any anecdotal evidence is appreciated!

I’m a 23yr old Male and I’ve had odd symptoms for the better part of a year now. Started when I noticed I couldn’t handle substances at all anymore (I used to smoke a lot but cant smoke without a panic attack anymore and feeling so many other things and drinking makes me feel disoriented immediately) So in the past 6-7 months, I’ve gone to urgent care and the er around 6 times total and this last time I went to the urgent care, I got a CT cause I had an on set of dizziness that lasted for hours even after taking a nap for 2 hours. The results say there was calcification of 3mm and said results seem to point to multifocal meningiomas. I go see my PC and he was like okay let’s get an MRI, got it and it came out clean. I don’t know what to do and I feel like I’m just being led astray but I have a neurology apt, it’s just going tot take 6 months to see. I’m gonna call other docs tomorrow to see if I can be seen sooner. I just don’t know what to trust. The CT could had artifacts, but the ear pain, dizziness i experience sometimes along with a sense of feeling off that I can’t describe any other way, every single day I don’t know what to believe and I feel like I’m going crazy.

The countdown is officially on and I'll be having a second surgery next month to remove the other half of my pituitary macroadenoma. The first surgery I had was a transphenoidal procedure this past October. I'll be honest, it was rough. My surgeon said it was the harder surgery of the two, but I'm finding that hard to believe! From the information I have been given, it seems the healing process is similar, but I'm terrified. I know everyone is different, but if you have had a craniotomy what was the experience like for you? Was it very painful? How long after did you start to feel like your normal self again? Can you feel the screws in your head? I'm starting to prep and pay bills ahead of time, but what are some things that helped you that you didn't think of before the surgery that you wish you would have known? Any input or tips are appreciated 🙏

Im 20 years old and just got diagnosed with a 4 x 3 mm hypoenhancing nodule in the left sella where my pituitary gland is. My mri finding states: This is favored to represent either a small incidental Rathke's cleft cyst or heterogeneous enhancement of the normal pituitary parenchyma.

I am relieved to have answers because I haven’t felt like myself in 2 years since receiving the Depo provera injection. My symptoms line up with Rathke's cleft cyst. But I’m not sure if that was directly caused by the Depo injection or it just happened on its own. Regardless, though it’s pretty small it’s been causing problems and is symptomatic. I’m worried they won’t want to remove it surgically because of its size. Has anyone else dealt with a similar situation?

In all honesty I am worried. It’s been impacting my day to day life immensely and I just want it removed.

Edit: I thought ide describe some of my symptoms which include: loss of period for 2 years, loss of smell, cold intolerance, mood and behavior changes, headaches, vision problems, I’m constantly tired and fatigued. I am the most anxious and depressed I have ever been. I can’t use the bathroom (constipation and digestive issues). I gain weight despite working out and eating clean, no changes to my diet whatsoever. I have an under active thyroid and back pain. Facial swelling, oily and dry skin, joint pain, etc

Hi Everyone,

I've been having increasingly severe symptoms of headache, dizziness, head pressure that feels like a sinus infection but isn't, facial pain, and fatigue for over a year and a half. I finally got a referral to an ear nose and throat doctor in February because I didn't know what else to do (my PCP said they didn't know what was wrong, two times to urgent care earned me a shoulder shrug as well; both told me it was probably stress/anxiety). The ENT saw nothing wrong with my sinuses but ordered a CT because my symptoms sounded "kind of weird". I got the CT results back on March 5th and they showed a lime-sized mass near the temporal lobe.

I had to wait three weeks to see a neurosurgeon, then two weeks for the MRI's she ordered and now I'm 13 days out from following up with her to discuss treatment options (which will very likely be surgery due to the size and my symptoms). I feel like my life is on hold and I'm going a little stir crazy.

The advice I'm looking for: What should I keep in mind pre-surgery? Do folks have suggestions for what helped during the hospital stay and then things that helped you navigate things at home post-op? I'll thankfully have friends and family to help :)

Thank you!

i’m 19 years old with a gene mutation causing a brain tumor generator (i don’t remember what the mutation is called i just remember it having numbers) i’ve survived two brain tumors one a 8 and another at 16 every 8 years i have to get brain surgery and i found out about the gene mutation last year and id be lying if i said im not scared of my future which is so gut wrenching considering i always had such a drive and motivation for the future i had such big dreams and now im not so sure i feel like im in shackles of my own disease and i just don’t know how to cope and i cant talk to anyone about it bc everyone quickly shuts it down bc my tumor take them feel uncomfortable but what about me ? im suffering and i cant afford therapy. and there are no support groups where im from. how do i cope ?

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...

Hey Reddit family,

I’m writing this because I’m finally at a place where I can say I made it through the storm. Not untouched, but unbroken.

A while back (March 2020- one week before Covid)I had brain surgery after doctors found a tumor pressing against my amygdala, the part of the brain that controls emotion, memory, and fear. That moment shook me. But coming out of it, I realized I had a second chance at life. And I promised myself I wouldn’t waste it.

So I started living.

I went skydiving for the first time. I got my motorcycle license, something I always wanted to do. I became the full-time dad to my amazing son. I became the top salesperson at my company. I earned promotions, respect, and recognition.

But even with all of that, I still struggled. Imposter syndrome hit me hard.

I constantly felt like I wasn’t smart enough, wasn’t polished enough, or didn’t deserve the success I was achieving. Even after everything I had accomplished, I kept thinking it was only a matter of time before someone figured out I wasn’t who they believed I was.

Even now, when the people close to me praise me and tell me how proud they are, I struggle to fully feel it. Not because I’m ungrateful, but because my heart is focused on helping others. That’s what truly gives me purpose.

Here’s what I’ve learned: that voice of doubt is a liar.

Surviving brain surgery didn’t just give me another shot at life. It gave me a new perspective. I am not here to be perfect. I am here to be real, to grow, to show up, and to live fully.

I still struggle with memory lapses. I still get nervous in meetings. I still second-guess myself. But now, I fight back. I write daily affirmations. I speak to myself with respect. I wake up early, work out, read, reflect, and I keep showing up.

If you’re someone who feels lost, broken, or like you’re not enough, I see you. I’ve been there. And I want you to know you have more strength than you realize. You do not have to have it all figured out. You just need to take one step at a time.

I’m sharing this not as a therapist or an expert, but as someone who has been in the dark and is now choosing the light. If I can help even one person feel seen, heard, or encouraged, then it’s worth it.

If you ever need someone to talk to, feel free to comment or DM me. We rise together.

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.