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

May 29th 2014 by rulerofelves • 18 Questions • 1534 Points

So, I had a brain tumor called a Meningioma of the Jugular Foramen. It was/is benign and was in a pretty difficult spot to get to according to my two surgeons which is why the surgery lasted 20 hours. And, no, they didn't get all of it unfortunately but I'm going in every 12 months for a check up to make sure it isn't growing more.

My proof: http://imgur.com/a/kWrgE

Edit: I'll post a picture of my tongue as soon as I get home so you guys can see what an atrophied tongue looks like.

Q:

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 :)

A:

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. :)


Q:

anything else strange before that? other symptoms?

A:

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.


Q:

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?

A:

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.


Q:

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

A:

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.


Q:

Has anything in your daily life changed since your surgery?

A:

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.


Q:

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

A:

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.


Q:

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."

A:

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.


Q:

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.

A:

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.


Q:

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..

A:

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.


Q:

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!

A:

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


Q:

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

A:

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.


Q:

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

A:

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.


Q:

Have you noticed any personality changes since the surgery?

A:

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


Q:

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

A:

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.


Q:

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

A:

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


Q:

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

A:

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.


Q:

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

A:

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.


Q:

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!

A:

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