IamA girl who had a 20 hour sub-cranial brain surgery. AMA.

What were your initial symptoms that lead to the discovery of the tumor? Be good to raise awareness of things like this.

Also congrats on your recovery, looking really good :)

The only symptom that really got me to go to the doctor was that half my tongue was paralyzed. It was atrophied and I didn't really have any control over it. One day, I showed my friend how weird my tongue was and she freaked out and took me to the school nurse who told me to get an MRI as soon as I could. So I did, and that night the hospital called with the results saying that they had found something.

And thank you. :)

anything else strange before that? other symptoms?

Well I have been consistently clearing y throat since I can remember (because I can't properly swallow due to paralysis of half my throat) so the doctors think I've probably this tumor since.. birth.

My girlfriend has the same swallowing problem (not making a joke, it's true) and she has constant migraines. Do you think that she should go in for a scan?

Um, I would say if you have any thought in your mind you should go in. This is definitely something not to put off. I don't want to freak people out who have a lot of headaches but that is definitely the most common sign for almost any brain tumor.

That is precisely what I keep telling her but she keeps putting it off and denying that anything is wrong, not that I want there to be. I'll show her this AMA and maybe that will motivate her. Thank you.

I hope so. Just because she might be scared of the answer shouldn't stop her from knowing at all. If there's a chance it could be something she needs I get it checked out as soon as she can.

I hope so. Just because she might be scared of the answer shouldn't stop her from knowing at all. If there's a chance it could be something she needs I get it checked out as soon as she can.

Best of luck to the both of you.

Did your chronic tongue paralysis and swallowing issues improve/resolve after the surgery?

No, they actually got worse. When the surgeons cut out the tumor they cut out the nerves around it as well so what little function I had left though the nerves was completely gone after the surgery. It took a little while to get used to it.

You said that after the surgery your swallowing got worse. My question is - was the surgery required? Was the tumor growing, or you decided to remove it just in case?

The tumor was incredibly aggressive for a meningeoma. Normally people only have problems with these types of tumors once they're well into their 60's and it had grown around my carotid artery so it was cutting off blood flow. So, yes, something had to be done about it.

I may be a layman, but what surgeons can do amazes me. Thinking that this person looked at their calendar and said "This Thursday? Can't golf.... gotta do brain surgery... you know, save a woman's life."

Exactly.

It honestly blew me away when I saw the picture of my surgery. I can't even make sense of what's what. I don't see my jaw, my skull. It looks like a giant ball of mush and the fact that they can go in there and work with smaller than hair sized cranial nerves in all of that is the most amazing thing.

What was the idea of somebody cutting you open to help you like? Was it hard to say yes to?

By the way, this is amazing.

For the two months that I was going to about 5 doctor appointments a week, I was in shock I guess. My body and mind never really let me truly think about what was about to happen. But, after the surgery, with all the pain I was in and discomfort, I don't want to say I became depressed because that word gets thrown around a lot, but for a while I did think constantly about what would have happened if I had died in surgery. I became obsessed with it and even told my boyfriend because at the time, I was so miserable. I couldn't eat by myself, I wasn't allowed to walk up the stairs to sleep in my own bed, I couldn't go hiking with friends or even down the street to a cafe with them. For a while I wished I had died in surgery leaving everyone with a memory of a young careless girl who had fun and just left too soon, instead of tainting those ideas of who I was with the unhappy miserable girl that I became.

Those pictures are crazy!! Did you ask for them or is that just normal to have surgeons photograph your brain?

Some of those, my mom took of me but the pre-op, post-op, and during pictures were taken by my brain surgeon. I'm not sure how common it is for them to do that but I think they wanted a picture of it because it's the second type of tumor (that they know of) to have existed.

When I found out they took pictures I didn't stop bugging my surgeon until he sent them to me. It was too fascinating to not want to see what the inside of me looks like.

Has anything in your daily life changed since your surgery?

Well the tumor had destroyed several cranial nerves, many of which were in control of my swallowing on the left side of my throat. So, I basically have half of my throat paralyzed permanently. For a while after the surgery I didn't want to go into public because sometimes I would just aspirate on my own saliva go into a series of coughing/choking fits. It was incredibly embarrassing and made going to college pretty difficult for the first semester. I would get really nervous and then think about my throat more which would increase the risk of my choking of my own spit. I eventually began to become more comfortable in public situations and it got a little easier because I wasn't thinking so much about my throat. So now, after my second semester, I'm almost back to how I used to be.

Did you work with a speech pathologist for your swallowing? Curious if they recommended any strategies (assuming you did) to get around the paralysis.

I did, I'm currently working with a swallowing therapist as well. There are several exercises that he has me to help improve my swallowing.

What nerves did you lose? Your situation is very similar to mine but I am 10 years out now missing 9th,10th, 11th, and 12th cranial base nerves and my jugular.

I'm missing the 9th, 10th, 11th, and 12th as well but they managed to save my jugular

That's crazy. My scar is identical to yours, I also have horners syndrome which is very obvious with green eyes. Do you have issues with your eyebrow sweating from the horners? My tongue no longer sits straight and I have what many refer to as a phone sex operator voice. I aspirate like no ones business and have to turn my head to the right, the side my tumor was on, in order to swallow properly or yell loudly. How is your voice? Sorry for all the questions. I was 12/13 when I had my tumors removed and I feel like they butchered me, I am really interested in how everything ended up to affect you.

Oh my god. Everything you just said is what I do and what happens to me. My eyebrow sweats in a weird way, I have I turn my head to left (the side that my tumor was on) to swallow. My voice cracks a lot too.

I'm missing the 9th, 10th, 11th, and 12th as well but they managed to save my jugular

Mine only took 8 hours, but high five for brain surgery!

Wow! Surprised nobody has asked you anything yet! But how come this happened? If you feel comfortable talking about it

Nasty headaches, dizziness and the sound of what I can best describe as 'being underwater'. Lasted about 9 months of GP visits while they dismissed it.

Eventually got sent for an MRI and when the results came in, rushed in to see a specialist. I was presented with a few short term solutions, none of which sounded pleasant, ended up going with removing the whole thing (a cyst right smack bang between the ventricles).

8 hours of surgery, a few months off work, no problems since!

That's amazing! I'm glad everything worked out okay.

It's been an hour so I don't know if you're still doing this buuuuuuuut

I'd like to know how your parents handled your ordeal and if there was anything you wish they'd done differently.

Well the main issue, I think besides that fact that I had a brain tumor, was that I was showing signs of having this tumor for two years before someone finally suggested going to the doctor. I think my mom and dad feel really guilty for not having said something sooner. And, once we found out about it, I don't think my mom and I were apart for more than an hour at a time (besides sleeping of course). My mom got incredibly clingy, and she was already really smothering before all of this, but now I didn't seem to mind. My dad on the other hand had recently moved up north so I wasn't able to see him until the day of my actual surgery. He walked with me as they wheeled me into the room and he didn't leave my side the entire 4 days I spent in the ICU and the next 6 days in a regular hospital room. This might sound cheesy but my bond with my dad is so incredibly strong now because of what we went through together. I call him every single day just to say hi and ask him how his day was. He's probably getting annoyed by now but I just love talking to him.

Really glad to hear you're doing well. You are brave and it is good to talk about it. You mentioned that there were signs over two years of the tumor before finding it. Can you share what some of those signs were? Best of luck. <3

The three main signs were clearing my throat consistently (like several times a minute), my atrophied tongue, and the constant headaches.

Well the main issue, I think besides that fact that I had a brain tumor, was that I was showing signs of having this tumor for two years before someone finally suggested going to the doctor. I think my mom and dad feel really guilty for not having said something sooner. And, once we found out about it, I don't think my mom and I were apart for more than an hour at a time (besides sleeping of course). My mom got incredibly clingy, and she was already really smothering before all of this, but now I didn't seem to mind. My dad on the other hand had recently moved up north so I wasn't able to see him until the day of my actual surgery. He walked with me as they wheeled me into the room and he didn't leave my side the entire 4 days I spent in the ICU and the next 6 days in a regular hospital room. This might sound cheesy but my bond with my dad is so incredibly strong now because of what we went through together. I call him every single day just to say hi and ask him how his day was. He's probably getting annoyed by now but I just love talking to him.

But, I honestly don't think they could have handled or dealt with it any better. My mom found the absolute best surgeons and my dad and mom were there for me every step of the way. When I was crying and delirious from all the pain medication at 3 in the morning my dad would stroke my hair and tell me a story like he used to do when I was 5. I have no idea how I would have ever made it without them.

Not many people get to see their brains. Pretty beautiful brain!

Hahah thanks! I'm surprised you can make sense of the whole mess

Everyone wants to know about the surgery, I want to know what you dreamt about while you were out for 20 hours. Ive never been put under and am scared stiff at the idea of it..

I didn't dream about anything. I don't think people dream when they're under anesthesia. It was just kind of a lapse in time. I was being wheeled into the room, the nurse said she was going to give me something to help me relax and that was it.

I had some pretty crazy hallucinations while they had me on dilaudid though. Those were intense.

Have you noticed any personality changes since the surgery?

Oddly enough, I have a very short temper now. I don't think it's related to the actual surgery though.

A situation like that really grows on you, how did you deal with it?

It was weird. While I was in the hospital for 10 days, pumped full of pain medications, I was really emotional and vulnerable. I had never truly felt mortal up until that point. It was absolutely terrifying knowing that I was so fragile. I developed, I guess you could call it, separation anxiety. I would go into complete freak out mode if my mom or dad left me alone in the hospital room. I even did this after I got home from the hospital and for about a month after. But, as I began healing and the headaches began to go away, the emotions and feelings I felt began to go with it.

Now, a year later, I hardly feel like this surgery impacted me in any way. I'd love to say that I have a whole new perspective on life and I value and cherish it more, but.. I don't. I wish I did, because I feel like a completely ungrateful asshole who's life was saved and nothing really came out of it for me.

That's really unfortunate, I too felt that way when I was in the hospital although it was a much smaller scale incident than this. I could only imagine how painful and confusing it must have been to not know what is going on and having a strong attachment to something and the fear of letting it go or losing it, in this case your parents were those attachments. I am glad you came out of it fine and haven't let it affect your life for the better. And please don't ever believe you won't amount to anything, it's one of the worst poisons you can put inside your body without even knowing. You are an admirable person to come out of a situation like that and come here to a crowd of strangers to share your stories and answer questions for them. Thank you for your time here, I wish you a great recovery and life to come.

Thank you so much. It honestly makes me feel good to read this. The main reason I actually came to the internet to talk about this to a bunch of strangers is because it makes me feel better to talk about it. I can't just go up to people in real life and show them a picture of my skull sawed open and expect them to be like, "Oh hey! Cool! Let's talk about it." Internet strangers offers a lot more comfort than some would think.

I suppose it is hard to relate to a situation like that in real life v.s. a crowd of thousands. Well anyways I'm glad I could at least attempt to make the situation better for you and again wish you the best in your future.

Thank you, that means a lot.

Did you try to fight the anesthetic as you went to sleep?

Hahaha yeah but that didn't really work out too well. I tried really hard to remember the last thing I saw before I went out and for the life of me, I don't even remember entering the operating room.

Man, I've had brain surgeries before, but never a 20 hour long surgery. I'm glad it seems you are doing well.

Question for ya: How terrible was the hospital food for ya? When I had to go in, only thing that was even slightly edible for me was hospital pizza

Hahaha oh god don't get me started on the hospital food.

Half of my throat was paralyzed so they had me on a liquid diet because I couldn't swallow solids yet. As if the regular hospital food wasn't bad enough, they had me on PUREED CHICKEN. Everything I ate was blended. So fucking terrible. I never craved a sandwich more in my life.

Did you notice anyone looking or acting differently around you after the surgery? If so, how did you deal with this?

No, thank god. That would have made it harder to deal with. Fortunately, the area that they shaved on my head was easily covered by my hair.

Did it hurt?

Before, since it had grown down into my neck, just some muscle tightness in my neck. After the surgery, holy hell it hurt.

Glad you're ok. That seems like quite an ordeal. It's amazing what modern medicine can accomplish.

Please forgive me for this, as I know this is a serious post...but you look like the crazy girl in the video that just "Loves Cats!".

So...I'm sure Reddit would like to know...do you like cats as well?

That's not me but I'm nuts about cats. Like I really really love them and it breaks my heart every day I don't have one.

Like how does the surgeon rotars work? do they swap? and why did it take 20 hours?

I'm pretty sure they were both in there for the entire 20 hours. Surgeons are pretty amazing people.

My friend from high school who is also a 20 year old girl just found out she has a brain tumor also. She has been going through surgeries and chemo. I just wanted to say you're not the only one and a positive attitude goes a long way. Good luck!

Thank you! I hope your friend is doing really well. Cancer is quite the bitch from what I've heard.

As a chordoid menigioma(lining of the brain) survivor myself I wanted to say congrats on a successful surgery. I woke up one morning cross eyed and blind in one eye. That's how we found mine. I just thought I did someonehing to my neck...I personally had to go through two 15 hour surgeries because it came back fast and hard. I then went through two months of proton radiation therapy along with being on the chemo pill. 6 years later I'm still doing two mri's a year and now on seizure meds because of post radiation damage. Since the radiation it hasn't grown more then 2mm. It can be scary and an overwhelming thing to go through. If you need to talk to anyone feel free to hit me up. People, employers, family sometimes just don't get what your going through

That's amazing! I'm glad you're alright though.

I really agree with friends and family not being able I truly understand what I'm going through. They can see everything from an outsiders view but they'll never be able to understand the emotion part of it and what I've had to go though just to feel relatively comfortable in public.

It might be inappropriate but may I ask how much this surgery did cost you? :)

Absolutely nothing. My step mom has great health insurance. We were very fortunate.