I discovered a massive tumor in my head three weeks ago and had it operated on within 24 hours. The surgeon removed most of it, if not all of it. I still have a long path ahead though. The tumor has become my life for the time being.

Here's the proof: http://i.imgur.com/BxDKpIr.png

Edit: It's super late where I am, so I'm off to bed. Please leave any questions you have, and I'll get back to them tomorrow.

Comments: 389 • Responses: 92  • Date: 

herpderpherpderp241 karma

How do you feel about dark humour pertaining to your situation? I'm not sure if you'll find this funny or not, but when I was doing the back-check on your verification picture, when I was going through Google Images, this is what I found:

http://imgur.com/PNklwUU

As you'll see, picture #14 in visually similar images is:

http://imgur.com/p594MYk

Didn't know if you'd appreciate the dark humour of that.

SamTheSnowman210 karma

Hahahahahahaha, I'm laughing so hard right now. That kind of humor is right up my alley.

not_a_muggle129 karma

How was it discovered? Did you have other symptoms that brought you the doctor who recommended the brain scan?

Good luck with everything, positive thoughts sent your way!

SamTheSnowman216 karma

I had no idea anything was wrong. It was discovered because the tumor became so inflamed that the symptoms caused me to think I wouldn't make it. I was at a restaurant while on vacation, and I suddenly lost a lot of motor function in my right hand, lost the ability to speak, and had a lot of trouble breathing. They did the MRIs that night.

ikahjalmr83 karma

How did you recover from that? I mean, obviously you survived, but is your motor function/speech/breathing okay? I hope so, that sounds like an especially terrifying way to learn of having a brain tumor.

SamTheSnowman204 karma

I was speaking like I was without the tumor right after the surgery. After a few days I was relatively back to normal, just a little weaker. It's incredible that medicine has advanced to the point where I'm fine four days after.

e-jammer141 karma

That's crazy, I swear my wisdom teeth caused me more trouble than that.

SamTheSnowman234 karma

I have to get my wisdom teeth taken out within the next six months. I'll let you know how they compare.

e-jammer52 karma

I have a cautnionary tale that I'm moderately sure you won't need.

Don't get your friends to make you hash cookies becasue you can't smoke. You will get an urge to, while you are incapable of moving your jaw, an urge so strong to eat every solid object in existence (as well as some gasses).

Its.. not fun. Intriguing, and enlightening, but not fun.

SamTheSnowman67 karma

I've never done any sort of drugs anyway. I'm as straight-edge as it gets.

lolApexseals29 karma

hard to find people like that anymore. i havent had a sip of alcohol in 10 years.

also havent gotten laid in 10 years, but thats another story lol.

SamTheSnowman28 karma

Haha, I'm certain those aren't related.

cjkline8328 karma

I dont know if this will help or not but (strawberry) milkshakes (my Mom got me like 3 durring my recovery) helped soothe my pain and discomfort from the tooth extraction.

SamTheSnowman24 karma

I'll remember that when I get the surgery. Thanks.

e-jammer9 karma

Its for the best. They are really only fun if its a path you choose to take, and even then its a nasty dangerous balancing act that is almost impossible. I've turned back many people who wanted to take my path for the wrong reasons.

SamTheSnowman17 karma

I've found that tolerance of other people is fine so long as they don't try to force me into it as well.

GoogleSlaps34 karma

if the painkillers say to take with food, take with food.

SamTheSnowman14 karma

Duly noted.

SmellyMickey14 karma

Another lesson I learned the hard way, don't jump on the trampoline the day after your surgery! Dry sockets freaking hurt.

SamTheSnowman15 karma

I remember brushing my teeth for the first time afterwards. It hurt. Brushing my teeth hurt. Who knew?

trufleshufles7 karma

Yeah it's amazing where we're at, my dad recovered just the same even after his second surgery. My advice is to not just appreciate the "good" things you experience, but be grateful for the bad things that you don't. For example a successful recovery is amazing. Hang in there man, I hope your family is with you and I wish you the best.

SamTheSnowman12 karma

I'm happy to have recovered so quickly. I kind of felt bad for people visiting me. I felt like they expected to see me on bed rest, but found me acting practically normal.

lifeformed17 karma

What was it like not being able to speak? Was it possible, but just really hard? Were you able to move your mouth and tongue normally? Could you communicate clearly in other ways (writing, body language)?

SamTheSnowman24 karma

I couldn't write either, but that's because I'd lost full control of my right hand. I could say "no" out of instinct. I could also make noises, but words just wouldn't work. It's one of the hardest things to explain that has ever happened to me.

chippies17 karma

Hi there. My dad was diagnosed with brain cancer in November 2013, after having a grand mal seisure in June 2013 with no prior symptoms. He's hasn't been able to communicate or really do much of anything in recent months, and his current prognosis is for weeks to maybe a month.

Can you tell me how cognisant you were during these times when you lacked communicative skills? I always give my dad the benefit of the doubt that he knows what's going on, but his body (by way of the brain) is betraying him and preventing him from expressing anything. He makes eye contact, and will smile when we make inside jokes, but still I wonder. Also, were you in any discomfort or pain during those times?

Thanks for doing this, I'm glad you're doing well and wish you all the best.

SamTheSnowman18 karma

While I couldn't control my right hand, I could still move it and put it into a fist. I could control my whole body, but it was the speaking that I couldn't do.

It was frustrating, but a couple of my cousins were with me and they were able to translate my gestures so that the nurses knew what I was trying to say: I was cold, I was hot, I was thirsty, I had to go to the bathroom, those sort of things.

Unfortunately I can't really relate to your dad, but if you find some way to communicate even simple things it could help.

I hope this proves helpful in some way.

CrimsonHarmony6 karma

Did you hear the words in your head or was it like you were fumbling around the syllables?

SamTheSnowman17 karma

It's weird. It's like I knew everything that was happening and what I needed to communicate, but words just didn't exist. I couldn't really form sentences in my head.

slackador4 karma

I know it probably doesn't compare, but there have been 2 specific times in my life that I can recall that I was SUPER sleep deprived and was awoken only an hour or so in to my sleep. On these occasions, people were talking to me, but I was simply 100% unable to understand what they were saying. I knew they were talking to me, I could hear the sounds, but it was all gibberish to me. I can only imagine that what you experienced was a bit similar, but in reverse.

SamTheSnowman4 karma

Yeah, I can see how that would relate. There were times like that, though. I really had to focus to understand what the paramedics were asking me. Otherwise, it was exactly like you just described.

ChewyUbleck1 karma

I've had migraines that left me in a state that is identical to what you're describing. It's absolutely terrifying.

SamTheSnowman1 karma

I think I could have written had I been a lefty, but I was a righty unfortunately.

paleperson10 karma

That sounds absolutely terrifying. Glad to hear you are doing better now :) It truly amazes me what can be done about things like this these days.

SamTheSnowman14 karma

Where we were wasn't near a hospital either. I honestly thought I would die of suffocation then and there.

StoneLaquenta66 karma

How was it having u/StoneLaquenta as a college roommate? On a side note, sorry for destroying our bean bag chair and never buying a new one like I said I would.

SamTheSnowman45 karma

That guy was awful. He never disturbed me or ate my food or anything. How much was that beanbag chair? Like $10? Who cares?

StoneLaquenta39 karma

I care Sam! And thanks! I tried to stay away from all of your ludicrous amounts of snacks. Even that trader joes cookie butter. Oh my god that stuff was good!

SamTheSnowman42 karma

I put that between some chocolate chip oatmeal cookies today. It was fantastic.

PrincessOfWales64 karma

Wow, seeing the size of that mass is quite jarring. I'm glad you're on the road to recovery. What was the surgery like? What did it entail?

SamTheSnowman33 karma

It was called a craniotomy, and this one only took a couple hours. Here's the wikipedia page: http://en.wikipedia.org/wiki/Craniotomy. That will explain it better than I can.

zKITKATz40 karma

Well shoot. So what's next? Where do you go from here?

SamTheSnowman58 karma

I have an appointment with a highly recommended neuro-oncologist a week from Monday. I'll find out then.

Neurooncologist167 karma

Neuro-oncologist here!

Glad you are doing well, OP. The fact that the tumor was so large when it was first discovered actually suggests that it was relatively slow-growing. (Brains don't adapt as easily to the presence of a fast-growing tumor.)

It sounds like you have a good management plan in place, so I'll keep my recommendations brief...

  • For a tumor like an ependymoma, having an accurate diagnosis is key. Consider getting a second pathology review (ie, send the tumor slides or block to another institution).

  • For ependymomas, maximal resection is important, so if there is residual tumor, consider getting a second surgical opinion.

  • Keep good records. Make sure you have CDs of all of your MRIs.

  • Don't forget the holistic perspective. Tune out unhelpful "advice". Eat healthy (nothing crazy is necessary), exercise (when the craniotomy heals up), get good sleep, reduce stress, connect with others.

You are on the right path! If you have any other questions, feel free to PM me.

SamTheSnowman46 karma

Wow, thanks! My surgeon is very busy and is eight hours away at all times, so I haven't even seen the original pathology report even though I asked for it.

I also don't have access to the slides of the tumor. I was told that the tumor was sent out for a second opinion originally though.

The picture on here came from the CD of MRIs. I'll be learning a lot more once I meet with my neuro-oncologist a week from Monday. I am tagging you in case I need any advice in the future.

Neurooncologist50 karma

Glad to hear the slides are being reviewed. Although it's not always made clear to patients, keep in mind that you do have the right to control what happens to your tumor tissue. After all, it's your brain...

You may also be able to get the pathology report through the Medical Records department, though sometimes that's easier said than done.

(And yes, I'll make sure I'm available if you have any questions. I've been lurking reddit a long time; happy to step out of the shadows if I can be of help.)

SamTheSnowman17 karma

The problem is that I was on vacation when this all happened. So now it's all about 7 hours away. Again, I'll talk to my neuro-oncologist a week from Monday.

makorunner15 karma

Having the pathology report is so helpful, without I would never have found out I had a pure embryonal carcinoma non-seminoma. My urologist just told me it was a non-seminoma and needed surgery to remove my lymph nodes. But because I did the research on my exact type from the pathology report, I discovered that I could do one round of chemo instead of a major lymph node dissection. Basically what I'm saying is because I saw my pathology report, I saved myself a scar and unnecessary pain!

SamTheSnowman10 karma

I can't wait to get my own hands on my pathology report.

arbyq50006 karma

he has been a redditor since 11pm tonight. it's not likely you will see him in the future

SamTheSnowman11 karma

I friended him so I could remember him in the future... even though his name is neurooncologist.

pbtree11 karma

Hey /u/SamTheSnowman, I'm not (based on others comment's bellow) convinced that /u/Neuroncologist is entirely legit.

However, I've worked in the health care software industry for a few years, and I can definitely say that his advice regarding getting a digital hard copy of all of your MRIs and whatever data you can for you pathology slides, especially any that will save you a biopsy, is totally spot on. Try to get all of your medical records in some easy to process format -- the worst case is essentially hand typed hard copies of said records, but that beats a format that your hospital back home will be unable to deal with.

Hospitals, especially in different countries, but even between institutions here in the states, have awful standards for sharing data in bulk, but if you can break it down into things like MRI and pathology slides, you basically end up with some JPEGS that anyone can work with.

Demand your data in such a format, and you'll have a much better chance at surviving whatever is going on here (again, not a dr, but I know a good case for imaging and good record keeping when I see one!)

SamTheSnowman6 karma

I have a couple packets that were given to me as well as a CD with all of the MRIs on it. Would you suggest scanning the packets to my computer?

REALbwGHOST36 karma

At the time of discovery, were you shocked as your family and friends may have been, or did you think of the tumour as a relieving explanation to the symptoms/effects (poor grades, depression etc.) you were experiencing?

SamTheSnowman91 karma

At first I didn't even grasp it. I was so shocked and out of it that I just thought, "Oh, I have a tumor." It was like someone told me, "Today is Thursday." It didn't sink in until a couple days later. Then I was a little distraught. The relief did eventually come, though. Having an explanation for why I was becoming less intelligent was a good thing to have.

themindlessone4 karma

That would confuse the hell out of me too, today being Sunday and all.

Jokes aside, I'm glad you are doing as well as you are.

Pennypacking3 karma

Well he said it takes a couple of days to sink in, maybe it's Thursday to him.

SamTheSnowman5 karma

It's not Tuesday?

amethyst_specter30 karma

This is an odd question, but how boring are you, and do you feel that you're less boring now? I ask because I sometimes wish something would go wrong with me just to make me less boring.

SamTheSnowman61 karma

I say I'm boring because even without the tumor I'm not the most sociable person, so I had a very good relationship with Netflix. While the tumor has been a great conversation topic, I would not recommend it to anyone. It sucks/sucked.

Well_thats_Rubbish29 karma

You mention cognitive impairment - were there any personality changes that, looking back, you think were attributable to the tumor?

SamTheSnowman58 karma

My depression. All of my family says that I became even more of a recluse. Depression runs in my family, so I thought that was it. Depression is still something I'll look out for, but this time it was the tumor.

Prosopagnosiape4 karma

Does that mean that with the tumour gone you feel a big lift in your mood?

SamTheSnowman9 karma

Yes, my overall mood has improved dramatically.

malvarez9729 karma

What are you studying now in college?

SamTheSnowman43 karma

Journalism, but I could change that after taking some time off.

Slayer197316 karma

Change to neurosciences!

SamTheSnowman24 karma

I'd be a little late to the game, and medical school is not cheap.

AsaTJ14 karma

I know you've heard this 1000 times probably, because I did when I majored in journalism, but we don't make any money. It's completely true. I didn't listen, and I didn't really understand. You'll actually be shocked how much money you don't make for the amount of work you do.

I'd still do it the same if I had it to do all over again, and I'm not trying to change your mind. But seriously. Hopefully you live somewhere that rent is cheap.

SamTheSnowman20 karma

I know. I'm not prepared to live an extravagant life in my years after college. I've also heard that I should do what I love, and I love writing.

AsaTJ9 karma

Then we are kindred spirits, man. Writing is awesome. Keep at it.

SamTheSnowman14 karma

The power of words is astounding, and when you can't use them you come to realize it more.

big-fireball10 karma

There are lots of writing jobs in business that aren't journalism. Just putting it put there.

SamTheSnowman11 karma

I know, but writing for a newspaper is appealing to me.

TheInvaderZim5 karma

I was into journalism for awhile, and even though I don't have any advice for the cancer, I have some advice for this: Switch to General Business. You can do pretty much anything with it, including journalism if by some miracle you find a job in the field.

Good luck with your recovery!

SamTheSnowman5 karma

I'll keep that in mind, thanks.

Pousseymahbitch19 karma

[deleted]

SamTheSnowman98 karma

It has. While I was being rushed to the hospital, instead of having my life flash before my eyes, I thought about how sad it was that I've never had the guts to be in a relationship with any intimacy, or a relationship period for that matter. So I asked a girl out that I had/have a pretty big crush on high school the other day. She politely turned me down, but we're still grabbing coffee on Monday.

to_tomorrow45 karma

A great small step. Friendly word of advice: don't focus on girls after they turn you down. Ask them out when you realize you're interested in them and move on if they decline. Your instinct will be to hang around on the off chance they'll change their mind--they won't, and you'll waste too much time.

SamTheSnowman40 karma

I know, but she said she still wanted to get together for lunch or something. I'm not stupid enough to turn down coffee with an attractive girl.

elemental_1_121 karma

It'll be kind of like going to the art gallery. Looking at a lot of pretty stuff that you'll never own and being totally okay with it.

SamTheSnowman50 karma

That's an accurate metaphor that I'd never repeat to her.

to_tomorrow12 karma

Of course! ... And she probably has friends... :)

SamTheSnowman28 karma

Haha, I'm about 80 percent sure it's a pity meet-up, but I don't really care at this point.

Whitesock121 karma

Hey its great experience for your next date with a hot chick!

SamTheSnowman20 karma

That's a great way of looking at it. Thanks.

HighInAK0 karma

She's gonna' change her mind, real quick.

And if not, hot girls always hang out with hot girls.

SamTheSnowman4 karma

About turning me down for the date? If so, I hope you're right.

HighInAK4 karma

Yes sir!

With a positive attitude and resolve like yours, who wouldn't go on at least one date with ya?!

SamTheSnowman10 karma

Looks and charisma have never been on my side.

fellow_hiccupper5 karma

That's okay, looks and charisma should be on your front.

SamTheSnowman4 karma

-Drum sting-

I_do_love_you_peanut16 karma

Did you, or anyone close to you, find you were acting at all irregularly or strangely? Did you ever find yourself thinking about things differently than you were used to? Erratic and / or unconventional behavior can be symptoms of brain tumors, and I'm curious about how that 'feels,' if you can remember it happening.

SamTheSnowman39 karma

My family noticed that I became much more reclusive, but no one came out directly and said it. The assumption was depression. I don't remember thinking about anything irregular, but that doesn't mean that I didn't. After the surgery I felt like I'd lost 10 pounds. I actually did lose 20 pounds from being in the hospital so that's not a good metaphor. I guess a better explanation would be that I felt like I'd come out of a fog.

SkyrimDovahkiin14 karma

Hey Sam, glad to know you're doing well. Just wanted to ask, were there any major symptoms that gave it away? Ironically, over the past few months, I started getting anxiety from GERDS, which caused pain in odd places, headaches, etc. i googled it (Worst idea in history btw. Makes you think everything is cancer. Damn you webMD!) and thought I had a brain tumor. Like anxiety does though, it made me start having symptoms of a tumor. Scared me half to death. Godspeed on the road to recovery!

SamTheSnowman24 karma

The major symptoms were sudden: trouble breathing, inability to speak, and diminished motor function in my right hand.

The other symptoms were more subtle: fatigue (sleeping 10-12 hours a day), depression (loss of motivation, constant sadness), loss of mental acuity (struggling to learn new things in my classes), and mild headaches on the back of my head near the right side of my neck.

My doctor specifically told me not to look up ependymomas online, which I promptly ignored and did anyway.

coffeetable9213 karma

I'm glad to know you're doing well! You mentioned how you had poor grades as a result to your tumor. I was wondering does the school erase your prior grades considering you were unable to work at the best of your ability? Or did they just give you the "try a better excuse" shit?

SamTheSnowman21 karma

They gave me the "we have no precedent for this" response. Now I pretty much have to prove that the tumor is the reason that I didn't pass the classes. They'll also take out the classes I passed last semester.

finishwhatyousta15 karma

That doesn't make sense to remove the ones you passed. You did that with a fucking brain tumor!

SamTheSnowman21 karma

That's what I'm saying, but instead of creating a method to deal with tumors they're bunching it in with the other medical reasons.

HiddenA7 karma

That's so lame... Maybe you could write a well researched and cited letter on what brain tumors can do to the mental capacities of an individual and how it personally changed your own abilities as a student. You could try talking to professors in the bio dept and seeing if they will help you out with your study.

Best of luck man!

SamTheSnowman13 karma

I have to write a letter explaining what the tumor did to me. I also have to get letters from my doctors explaining that the tumor could do what I claim.

cloud_watcher12 karma

My in-no-way-professional advice is this: Don't spend too much time and energy on this if it stresses you out. Your first job or grad school interview you say, "Well, I have great grades except for the semester when i had a brain tumor the size of an orange and didn't know it..." is going to explain that away just fine. You've been through something extraordinary and they'll understand that.

SamTheSnowman3 karma

That's what I keep hearing. I won't be working too hard on it.

tamelarox12 karma

So was this in your left lobe? You mentioned right side impact which indicates left side impairment but the photo of the CT scan looks like it was in the right lobe? Just wondering.

Never mind , I noticed that it was on the left.

SamTheSnowman20 karma

Yeah, the MRIs are taken in reverse for some reason.

CuresLightWounds13 karma

That's the way CT and MRI's are usually done - imagine that the patient's feet are coming out of the screen at you, and the patient's head is going back the other way, behind the screen. The image linked is only one "slice" of your brain, viewed from this perspective. (Pt on their back, feet coming at you).

Also the small letters R and L on the MRI confirm which side is which.

Good luck with your recovery!

SamTheSnowman13 karma

Thanks for explaining that. I've learned so much from this thread.

wwepersonell5 karma

This may sound like a weird question, but were you administered MRI contrast dyes for when you had your MRI to increase visibility of the scan? Like an IV where they put the contrast in before the MRI...

SamTheSnowman11 karma

That's a good question. I honestly don't know. I don't recall any dyes being put into my system, but I was being poked and prodded left and right, so it's entirely possible.

NaHCaBMgMnSi12 karma

Do you have pictures of during surgery? Or can we see some of your head?

Glad to know you're doing well!

SamTheSnowman35 karma

I didn't take any directly after, but here's one of my extremely swollen face after they took the head-wrap off: http://i.imgur.com/CxUpVy0.jpg

PM_ME_FOR_A_FRIEND9 karma

Why was your face so swollen?

SamTheSnowman21 karma

Well, after the surgery they had me attached to a drainage tube to drain the excess blood. When that was removed, there wasn't anywhere for the blood to go. So what little was left stayed in my head and caused it to swell.

PM_ME_FOR_A_FRIEND9 karma

Wow! I'm glad you're doing better man.

Did the swelling happen before or after the surgery?

SamTheSnowman12 karma

After, I was completely normal before the surgery.

goldguy8112 karma

Has this tumor brought financial stress to you through medical bills? How about student loans?

SamTheSnowman21 karma

Medical bills, no. At least not yet. Student loans, I'm still working on that one. It could push up the repayment dates.

cypherreddit22 karma

Federally secured loans (assuming US) can be changed to an income based repayment plan, the only downside is it extends the repayment cap to 25 years, the upside is that you will be able to afford payments (hint, some of my payments were $0)

SamTheSnowman16 karma

Comment saved.

whoiusedtobee11 karma

What type of limitations do your doctors have you on right now? Can you still listen to loud music, drive, go on roller coasters, etc.?

SamTheSnowman13 karma

I think I'm being more cautious than my doctor. They essentially said don't drive in the packet they gave me, and that was it. I can drive now, and I'm going to gradually work my way back into my job next week. There aren't any other limitations that they gave me.

DrKilgoreTroutMD9 karma

Did you name it?

SamTheSnowman14 karma

Gary

skylawl8 karma

Are you taking classes in the fall? I couldn't imagine. I'll be starting my 3rd year and after working for the same company the past two summers it doesn't even seem like a degree is worth it

SamTheSnowman19 karma

I am not. I'll be taking at least a semester off to make sure I am back to 100 percent. I was already going to take the time off to relax, because I didn't do well last semester and though it would help. Turns out the poor grades were due to the tumor.

jackandler8 karma

How do you look at your life now? Has it affected any of your goals in life? I wish the best for your treatment, you are strong!

SamTheSnowman31 karma

I'm hoping to be more of a risk-taker. My new motto is, "Do — fear is a waste of time."

jcaseys348 karma

Is there any idea on your prognosis after your surgery?

SamTheSnowman12 karma

It was an atypical ependymoma that's not techinally cancer, and that's about all I know. I'll hopefully find out the grade next week.

jcaseys348 karma

Well I hope the news is good next week, keep us updated if you can. Thanks for doing the AMA.

SamTheSnowman12 karma

So do I. Everything has gone well up to this points. No problem, I'm enjoying my fifteen minutes.

grantstein7 karma

As a fellow person that had a brain tumor removed (from the left side as well actually) have you noticed anything weird after surgery? A few things that I noticed from mine: 1.) Salty and sweet taste disappeared for about a month and made my favorite treat, peanut M&Ms, taste like just bland peanuts. 2.) Music suddenly had a more emotional connection for me (especially classical music or movie scores) For some reason, music from my childhood, like the Muppets or the Indiana Jones Overture, make me cry now. 3.) Learning to speak and write again took some time.

Glad that you're doing better now and this is just the beginning of recovery so don't get down on yourself. Once you put some distance between yourself and this event, you'll see how much stronger you are and how far you will have gone. I recommend getting the book "Shrinkage" by Bryan Bishop. It's a really great, inspirational, and funny read with a lot of good information on brain cancer and recovery. God bless, man. Keep up the fight.

SamTheSnowman8 karma

You know, I never noticed anything that major. I didn't really listen to music. The biggest thing was just the motivation and depression. As soon as the tumor was removed I regained my motivation and lost the depression. I didn't notice any extraordinary with my senses.

grantstein5 karma

The brain is so fascinating! I had a tumor in almost the same spot at about half of the size and had all of those weird side effects afterward, but nothing prior to discovering the tumor.

How did you sleep after surgery? I'm assuming they put you on some anti-swelling steroids?

SamTheSnowman7 karma

They did put me on some. along with Tylenol with Codeine. I didn't use all of the latter up, so I've got those lying around in case I get bored. (Kidding.)

I've gained a lot of respect for neurologists. The brain really is fascinating.

SlyEnemy7 karma

You sound remarkably calm, much calmer than I would be before or after surgery. How is your general mood about it all? When you were diagnosed did you think this was your ticket out or remain positive? You're a braver man than I, regardless. Good luck with your recovery.

SamTheSnowman10 karma

Despite my depression, I never wanted to die. My natural instinct when I was having trouble breathing was to do whatever I could to stay alive.

I can't explain why, but my natural reaction to all of this is to stay positive. Being negative will only bring down myself and those close to me, which I would not want to do.

People keep calling me brave, but in all honesty it's just a natural response to stay upbeat.

skylarmb7 karma

Whats your favorite movie?

SamTheSnowman15 karma

Seven Psychopaths. Part of my recovery has been watching a lot of Sam Rockwell movies.

DrAbro6 karma

[deleted]

SamTheSnowman9 karma

It's called an ependymoma.

DrAbro8 karma

[deleted]

SamTheSnowman11 karma

Yes, because I was already home when the pathology came in, I never got a chance to see it myself.

3AlarmLampscooter6 karma

Myxopapillary, low-grade or malignant?

And how freaked out were you it was going to be a glioblastoma before the diagnosis?

SamTheSnowman11 karma

I knew nothing about brain tumors before this, so I wasn't worried. When my family found out, my aunt (one of the smarter people in our family) was concerned about it being a glioblastoma. I don't know about the grade yet, but I can say that the doctor guessed that it had been growing for at least 6-8 months.

3AlarmLampscooter4 karma

Until you've got more info it'll be hard to figure out the best course of action, but definitely worth looking at open clinical trials to talk about with your onco.

SamTheSnowman5 karma

Right now, there isn't really a tumor to need a trial for. If anything, there are only cells that will likely require radiation therapy. It is also likely that it is gone altogether. That site has been bookmarked in case I need it in the future though. Thanks.

Beanbot07266 karma

Do you have a scar?

SamTheSnowman12 karma

I do. It's healing very quickly though, and it's covered up by my hair since they never shaved me for surgery.

Beanbot07267 karma

Crazy. Don't know if you've answered this already, but can I ask how old you are?

SamTheSnowman11 karma

I'm 20.

Beanbot07266 karma

What do you plan to do with your time off of school? Anything out of the ordinary? Also, I'm glad to hear you're recovering well :)

SamTheSnowman5 karma

I have to work so that I can pay off student loans, but once I have some extra cash I may visit some of my friends at colleges or travel around the country a little. It all depends on my financial situations.

krash1016 karma

ELI5 Question (I'll ask here for now) for any persons with knowledge on the...brain matter:

If you have a tumor like in this pic that looks like it has about a 4-7cm diameter. Once it is removed does the non-tumorous brain matter refill that empty space?

Is there any permanent damage because of the matter (seemingly?) pushed out of the way as the tumor grew? Or does the brain function relatively normal after the excision?

PS Glad you're OK Op.

SamTheSnowman12 karma

I can't ELI5, but I can say that from what I've read, the brain will fill in any space with regular brain matter over time, assuming there's no tumor remaining. I don't seem to have any permanent damage as a result of my tumor other than a nerve that may not regrow. However, my tumor grew outward and not inward.

blastfromthe16 karma

Do you have a whole new appreciation for medical science and doctors? I sure do even after visiting them for minor problems. Get well soon man!

SamTheSnowman5 karma

I do. I also realize how busy they all are.

lagastic6 karma

You seem like a cool guy. Are you out of life danger? And what were your symptoms?

SamTheSnowman7 karma

Technically, the tumor could still be present in cell form and grow back. Even without the cells, the tumor will always be a threat to grow back. Right now, as of this moment, I'm not in any danger of keeling over and kicking it. Two years from now? I can't say. I just have to take it a day at a time I suppose.

The major symptoms were that were sudden: trouble breathing, inability to speak, and diminished motor function in my right hand.

The other symptoms were more subtle: fatigue (sleeping 10-12 hours a day), depression (loss of motivation, constant sadness), loss of mental acuity (struggling to learn new things in my classes), and mild headaches on the back of my head near the right side of my neck.

niggawut694 karma

What effect has the surgery had on you? I'm guessing a large portion of your Brian was removed. Have you lost movement in any of your limbs? Any personality changes? Are you a Gary Busey now?

SamTheSnowman11 karma

Actually, none of my brain was removed. Had the tumor been on the opposite side of my brain, it would have been another story. I still have full control of all of my limbs, and I am luckily not a Gary Busey.

genericname12314 karma

Forgive me for being insensitive and uneducated.

Does this mean there's a literal fucking hole in your brain?

SamTheSnowman5 karma

Had the tumor grown inwards, then that would be true, but my tumor grew outward so there is no hole, luckily.

genericname12315 karma

So it pressed up against your skull from the inside??

SamTheSnowman7 karma

Yes. It pushed against the skull, and then pushed against the brain causing major pressure throughout.

Metalsand4 karma

Have you previously had migraines or headaches? I hear that's one of the precursors and I once had a CAT scan because of my reoccurring migraines and was curious if you previously suffered from them.

SamTheSnowman5 karma

I'd had headaches, but they were located on the right, lower back-side of my head around my neck. I've had three total migraines in my lifetime and only two of them occurred during the time I had the tumor.

dinogirlll263 karma

How did your family react? I can't imagine how scary that would be for you and them. Did they know you needed medical attention immediately? Do you think you would've been able to get help had you been alone?

SamTheSnowman3 karma

My parents weren't with me at the time. I was with my sister, aunt, uncle, my aunt's daughters from a previous marriage, their husbands and daughters.

My dad came out with a friend of his the next day, but my mom was in a separate state at the time. She was taking month-long lessons to become a flight attendant, and I specifically told her not to come see me and to finish the classes. Both of my parents are very emotional so it was probably tougher for them than it was for me.

I was able to tell my uncle that something was wrong before I lost the ability to speak. I was on vacation in a beach house, and had I decided not to go out I don't know how I would've responded. It's possible that I would've run to other houses and pounded on the door until someone could help.

pavpatel3 karma

How are you doing?

SamTheSnowman3 karma

I'm doing well. You would never know I'd had brain surgery by looking at me. I'm just trying to regain my endurance.

MillionSuns3 karma

What was your reaction when you learned you'd need surgery literally a day after the discovery?

SamTheSnowman5 karma

It was a shock. The surgeon came in and told me I'd need surgery. When I asked when, he said, "Right now." A few minutes later I was being doped up and wheeled into surgery. I'm not afraid to say there were a few tears out of shock.