In Surgery...

    Well, obviously, I was under anesthesia the whole time, so I don't remember much of what happened. But I will explain to you what has been explained to me.
    After you get the happy juice in your system, you are wheeled into the operating room (OR).

There, the nurses will put you under anesthesia, and you will fall into a deep sleep. The anesthesia will continuously be put into your system by breathing tubes that are placed down into your throat. These can make your throat horribly sore if they scratch your throat. It's not that much fun. Anyway, then they will go about their various procedures, readying your body for surgery. I had to get an arterial line (art-line) placed into the artery on my left wrist. I was out for that, so it didn't hurt. I chose to have the art-line and IV on the same side (left) so that I could have a totally free right side. You can choose to have one on left, one on right, though. The purpose of the art-line is that it makes the nurses able to draw blood without poking me each time. It was very helpful, I won't lie.
    The other things they did was sterilized the skin outside of my stomach so that in case the lining of my brain ruptured, they could patch it with a fat graft. Also, they put a catheter into my bladder. NOT FUN. :(
    The operation began. What they did for me was to have me get several CT's and MRI's so that they could make a digital map of my brain, and hooked their instruments up to the computer map so that they would know where they were. Since my cyst was on my pituitary, the docs chose to do a transsphenoidal approach. Basically, they went through my nose. They shoved my septum (the part of my nose that divides the nostrils) over and used the path through the sinuses to get to my cyst. Here's some photos explaining:

     See how simple that is? Nice, huh? I didn't even have to shave my head, and there were no external scars. It was great! When they had drilled through a little bit of bone, and drained/marsupialized the cyst, they shoved my septum back in place, and stitched up my nose a bit.

    Then, they rolled me into my room to recuperate. Apparently, lots of teenagers have issues waking up from anesthesia peacefully, and I was no different. I don't remember this, but I was flailing around when they tried to transfer me into my new bed. They knocked me out again, and the second time, I went in just fine.

Pre-Op and IV's

    Everything that you have done has led up to this. And you're kinda scared. Don't worry. Here are a few tips:

• don't drink the morning before (even water)
• don't eat
• REMEMBER your medical card
• bring a loved one

Why can't I eat/drink? Because the anesthesia might wobble your stomach, and you don't want to throw up right after brain surgery. That would SUCK!
 Let me tell you a little bit about my experience...
     I woke up at, like, 5 am to drive to the hospital with my mom. We brought my duffel bag (with my stuff in it) and went into the hospital. We followed the signs until we came to where we were supposed to sign in. Paperwork (blah, blah, blah, sign here, blah, blah, blah). If you've been reading my other posts, you know the drill. All this paperwork is important becuase you want to make sure that they give you the correct care that you need.
     After a lot of waiting rooms and people calling your name, you are going to enter into this room called the "Pre-Op Room". Here's a picture:

    This is where you are going to get ready for surgery. You are going to take off all of your clothes and put on a flimsy hospital gown. This is when I ought to let you know: privacy goes to hell as soon as you walk into the hospital. People are going be taking care of you, and part of that entails that they are going to examine parts of you that you won't enjoy quite as much. Just deal. It will be okay.
     You are going to get an IV. IV stands for intra-veinous (inside your veins). Ick. Just thinking about it makes me That was the part I was most scared about, but it really wasn't bad. The nurse saw me freaking out (I was crying a little) and explained to me what was going to happen. The people who are going to help you are nice. Don't worry. They will put a numbing gel on your hand, and it will feel buzzy, exactly like two bee-stings. Then, while you look away, they will put in the needle. How an IV works is that they use a needle to get it in, then press a little button to get the needle out, so you basically have a miniscule straw in your vein. They will use this to give you medicine and stuff. It will be attached to a cord with a bag called an "IV drip".

     You will stay on your rolling gurney bed, and then an anesthesiologist will come and put something in your IV that I call "happy juice". It will help you relax, and you won't really remember much. That is the point where I said good-bye to my mom. I don't really remember any of it, but apparently I high-fived her, then was rolled away giggling like a maniac and talking about all sorts of things (don't judge me!!). I remember a brief flash of the lights around the table in the operating room (OR), then I was out.
    When you are in pre-op, it can be scary. I was freaking out, and I didn't want to go into surgery. Up until that point, I was oddly calm, but when you are there, it can start making you nervous. Here is what I have to say about that: Don't worry. The God of the Universe is watching over you and protecting you. He loves you. Make sure you say bye to all of your loved ones, just for peace of mind. But DON'T worry. The doctors and nurses do this all of the time, and they will take care of you.

CT (CAT Scan)

     If you are about to get a CT (or CAT) scan, never fear. It's fast and easy, way faster than an MRI. First of all, CT stands for computed tomography. The doctors are trying to make a map of your brain using pictures that they capture. It uses radiation like an X-Ray, but don't worry - you won't get hurt. The initial process is the same as an MRI. You go (probably to the Radiology Department, where the MRI's are) and fill out paperwork (blah, blah, blah, sign here, blah, blah, blah). Wait, and when the tech calls your name, follow him/her into a room and take off your jewelry. They will lead you into a small room where you will lay down on a bed/table thing, and lie still. This goes really fast, trust me. Then they roll you into this big donut-shaped machine, which has a bright red light. Close your eyes. The techs will yell at you if you open them.



 
    The whole process is very chill. You will have this heavy vest/blanket thing on top of you to protect you from radiation (I think). The techs will scan your brain. Keep your eyes closed. It only takes, like, five (maybe ten) minutes. Then you are done and on your way. Don't forget to put back on your jewelry.
    Good job. You just did your first CT scan!

MRI

 

  If you have never had an MRI before, this might be your first experience with the whole ordeal. Let me tell you, it's actually NOT THAT BAD. Not bad at all, actually. Basically, what is going to happen is that you are going to walk in the room, a medical assistant (they are called a "tech") is going to lead you into a room. But before that:

• take off all jewelry
• change into comfy clothes (wear lighter clothes with a sweatshirt to wear if you want - they have blankets, too!)
• bring something to do in the waiting room
• don't drink too much water
• don't eat too much
• if you really need to, take a sedative to help you relax (not reccomended)
• GO TO THE BATHROOM before you go in the little room
• relax!!!

    This is going to be absolutely FINE! It's really not a big deal at all. In fact, it can actually be kind of relaxing and fun. What this test uses is a magnet, so calm your worries about radiation. MRI actually stands for Magnetic Resonace Imaging. It's just a big magnet, and that is why you need to take off all of your jewelry.
     Anyway, back to our scenario. You will walk in, sign some paperwork junk (blah, blah, blah, sign here, blah, blah, blah), and then you wait for them to call your name. When they do, you get up and follow them. If you brought a loved one, they can almost always come, too. Then, you go, the tech leads you into a room. STOP! IF YOU HAVE NOT GONE TO THE BATHROOM, DO IT NOW!! Good, now that your bladder is empty, step into the room. Your loved one will stay outside. The tech will ask you to lie on this bed/table thing. You will put in earplugs (or occasionally, headphones) to block the noise. Hint with foam earplugs: roll them really flat, then push them into your ear. They expand to block all the noise. And if they don't work the first time, try again. You really want them to be in there well.
     Lay on the table. You can ask for a blanket if you're cold, and the tech will get out one. Then lay still. This is your last opportunity to scratch itches, so take full advantage of the occasion. If you are getting a brain MRI, they are going to put your head really straight and put pillows around your head to brace it. This is all so that they can get the best picture possible. When I had one MRI, the pillows were more bracing my jaw than my head. The tech only realized that afterwards. Just to clarify, the pillows are not that uncomfortable. All of this can be really fun as long as you keep a good attitude. It's like an adventure!
    Once you are all braced and earplugged (I'm talking to you, people who are getting brain scanned), the tech is going to place this helmet/basket-y thing around your head. It's just another mechanism to keep you still (if you stay still, it won't take as long, and you won't have to come back to get another one). The helmet/basket will look like this:

     As soon as you are all set, the tech will hand you this little squishy thing attatched to a cord. This is your alarm. If you get really freaked out, feel sick, or need to go to the bathroom (because you were stupid and didn't listen to me the first two times), you can squeeze this and the tech will take you out really fast.

     This is the part where you go inside the machine. CLOSE YOUR EYES. I don't care if you aren't claustrophobic, you do NOT want to be stuck inside a tube for a long time when you feel trapped. Just close 'em. The tech is going to close the door and start talking to you through a microphone. They will say, "Okay, (your name), everything looks good. Now I want you to stay really still and we're going to start the first sequence. This will take about two minutes." Then, as you lie still, the machine is going to start whirring. Yes, you can hear it through your earphones. No, it's not scary. It's actually kind of cool. There are all these sounds that are going to go off, and it will sound like helicopter blades, machine guns, etc. One of the things I like to do is sing songs in my head or listen to the noise and imagine words that the noises could go with. It will make sense once you're in there, I swear.

     Anyway, after that sequence stops, another one will start. The tech will tell you, "Great job. Keep still, and the next sequence will be one minute." STAY STILL. The machine needs to get an accurate picture of your brain. One thing that it might do is move you around a little like a massage chair. I don't know why it does this, besides to get different angles, but it's fun. Keep your eyes closed, and relax. Take a nap if you can (I couldn't, but I did try).

    If you are like me, the tech will take you out halfway through and give you a shot in your elbow pit (it's the same place that they draw blood from, so no biggie). You will stay in your little encasement. Open your eyes if you want to. The shot won't hurt much at all. What is happening is that in the shot, there is what the docs call "contrast". This  stay relaxed, stay loose. This is your only opportunity to scratch. Stay as still as possible, though, so you don't need to get re-adjusted. Then they will put you back in. Close your eyes. You've done all of this before, so just relax. When the tech says that you are doing the last one or two sequences, if you really want to, you can open your eyes. It's not a big deal, but never do it at the start, in case you get claustrophobic.

    Once you get out, throw away your earplugs. Thank the tech and walk out.

   YAY!! You did your first MRI!! Good job. See, it wasn't bad at all.

Diagnosed

     When I found out about my cyst (I had a 2cm cyst on my pituitary), it was all within a few hours. Yes, we had signs leading up (not growing, secondary ammenarrhea, occasional headaches, etc), but nothing that screamed out "BRAIN CYST!!" What happened was that I had crazy bad headaches for a week and threw up, practically unable to move. The doctor said, "Oh, maybe she has a sinus infection," and sent me to get a CT (CAT scan). I crawled back to his office and waited for an hour until he came in and told me that I had a cyst on my brain. I was too tired and lethargic to really understand what was going on, but I have to admit that it was a relief to know what was going on, despite the whole "it's on your brain" announcement.
     I had to go home for a couple hours and then come back late at night to get an MRI. I was still sick, but spent a little time with friends and tried not to move my head too much (it still hurt). Then I went back, had the MRI, and went home. I was missing crew and school, and it was kind of a bad time to be getting this diagnosis. After all, life was still going on, and I had a busy schedule. Well, if this describes you, I have advice ("yay, advice!," you exclaim): Chill. You can't get better unless you have rest. You will never be able to do all those things that want your attention unless you give full attention to your body and mind right now. Trust me. If you're an adult, take off work. If you're a kid, take off school. Spend time alone, sleep a bit, eat good food. Get a clear mind to receive whatever lies ahead of you.
     If you just got diagnosed, talk to your doctor. If they won't give you answers, you can go online and read about your diagnosis. For me, that meant reading up on Rathke's cleft cysts (we don't actually know if it was that after all, but, still...). A warning though: don't take everything the internet says literally. I actually waited about half of a week before researching my diagnosis. It was the weekend, and I wasn't going to see the doctor for a few more days...why stress about it? My mom and I stayed away from medical websites for a while.

     Talk to friends. If you are reading this, and your palms are sweaty, you were just diagnosed, and you don't know how to comprehend what is happening - I know how you feel. I know that the last thing you want to do is talk to people. There are lots of worries that you might have:

• that your pals might not treat you like they used to
• that everyone will freak out
• they have too much on their plates, they don't need to worry about me, too

     These are not true. Maybe some of them will happen, but it will be worse if you don't tell anyone. They don't need to be involved in the whole process, but it can feel good to talk things out with people who don't have their medical license. You would want to know if your best friend had a medical issue, so do the same for them.
     And don't freak out. Take time to do things you like, don't just be glued to the computer or phone, constantly thinking about stupid medical problems. Have fun. Get your mind off of the nasties (I refer to hospital, medicine, crap, etc, as "nasties").
     Everything is going to be okay. Trust me. Don't let your imagination run away with you.

Appointments

     There are often many appointments leading up to a surgery, but don't let them get you down. When I had all those engagements with doctors, it freaked me out a little bit. Having to drive to the hospital all the time stressed me out, reminding me constantly that soon, I would be under the knife.
     My advice for you is to remember that all these appointments are helping the doctors know how to help you. Whether it's CT scans, MRI's, blood tests, or just check-ups, they are all happening so that when your surgery comes, it can go great!
     Make sure to bring a book and some candy or something. Waiting rooms can be busy. Also, bring along a friend, parent, or loved one. Everything is less daunting when you face it with someone by your side.

So You're Going to Have Surgery

Hi!     Well, I'm sure the past few weeks have been hell for you. I know what that's like, trust me. Whether you've known about this for days or for months (for some of you, maybe years), it's still the kind of thing that can totally keep you up at night. Sleep deprived or not, you can understand that something big is happening in your life. Here's what I have to say:

• take a deep breath (seriously, do it - now!)
• close your eyes
• pray
• take another deep breath (c'mon, just do it!)
• keep reading

     This is a major event, but it doesn't have to be a bad one. I want to let you know that no matter how much crap I went through during my whole surgery experience, I am able to look back on it as an overall good experience. 

     This blog was designed with you in mind. I wish that I had been able to access resources such as this before my surgery, but I know God helped me get through that for a reason, and perhaps that reason was so that I could help you. Hence, this blog was born! I pray that this helps you in some way, shape, or form.

    Keep reading!

         Blessings,

             Coxn