My Craniotomy Story

Craniotomy

Getting this done was to help with the epilepsy and get rid of the seizures as much as possible. I had to plan about meals ahead and make sure we have stuff ready before the surgery.

I knew things were going to be hard, and that the pain afterward was going to be intense, but I didn’t expect it to happen the way it did.

The surgery went really well, don’t get me wrong. I just know that for some reason, stuff was a little off. PS- I just need to put this down somewhere.

2 days before the surgery- There was tests among tests. It’s already rough being in the hospital for at least 8 hours (not an exaggeration), but having to do that without being able to drive (due to seizures) or easily take care of myself in the process really made the day hard. So all of the tests were hard to handle, and I was given an extra puffer on top of the normal meds I had to take, too, just because I seemed like I was worse off than I normally am. I decided not to look into extra information about the surgery so I didn’t make myself and other friends/family really scared and worked up.

Finally, I made it home and looked into paperwork and other things that needed to be completed, and I gave my husband a big hug. He seemed very positive and excited about all of this. We bought a camera so we can get photos of the surgery because, why not?

I decided to sleep basically until the surgery because we found out that we needed to be there at 5am-ish?

Surgery Times

Day 1- Brother, Mother, and Husband are all coming to be in the hospital for the surgery for me. We park and get ready to head inside with only a couple of bags. We decided we will leave the rest of the bags and belongings in the car since Husband will have to move the car anyway. After the surgery, he will bring our stuff in to the relaxing room that I will be staying in until I get sent home. I will have the surgery, recover for an hour or so, then get put into a room to myself for me and the family, right?

They went ahead and let my mother, brother, and husband visit me (I don’t remember too much because of everything I was taking at the time) but, my husband was allowed to stay with me.

Later that evening- “We still don’t have enough room for you to have your own room for you to heal up, so we have to keep you here. At least until we get a room open for you.” I was in a tiny area, not even a whole room to myself, trying to recover some how. Don’t get me wrong, the nurses were nice and cared about me. I don’t remember having issues directly with the nurses themselves but, people didn’t know how the hell to organize me to get into a room. When I somewhat became awake and knew what was going on later that night/next morning, I was in so much pain from the bottom of my back. No idea why.

The pain in my head makes sense given the giant cut above my ear for the craniotomy. But the pain in my lower right back, making it hard to sit let alone move, confused the heck out of me. I never expected this at all.

Day 2-

Woke up getting asked so many questions that I don’t know the answer too. I don’t even remember the questions that I was asked again and again. I just remember that I kept getting more meds and that I had a (PEE HELPER)catheter make me constantly feel like I had to pee more. Every couple/few hours I would get asked sometime, I couldn’t answer all the times. Or maybe I could hear the question and just couldn’t think of the work right away. So I would get given more meds. Right after I have meds, I would be so tired right away that I would fall asleep for I don’t know how long. And every time I would start to lay down, everything hurts, whatever the pain was from on my back.

I started to get a little bit of time that I was coming out of the crazy feeling though. I can remember people asking me some stuff and I was answering some questions. I was still in pain and was able to tell them what was happening, even though people thought I was nuts about it. I also realized there is food there and I should eat it. I really didn’t want to. Husband helped encourage me to eat some small stuff that was there but I mostly told him to eat it because I wasn’t going to. My head, mouth, tongue, back, butt, and even my sanity hurt so badly that I didn’t have the stamina needed to eat to survive.

Day 3

More pain and more sleep. Some stuff happen that I can’t remember at the time. I think around then is when I finally got the catheter removed and I learned how to walk a tiny bit.

Day 4

I actually remember some stuff happening. Either my body started getting somewhat used to having all of those meds or I just didn’t take as many as I was on day 1. Either way, my body was in pain and my brain was exastited. I couldn’t remember everything I needed to say all the time and I couldn’t even walk properly to be able to get to the car to go home. Luckily my husband helped me get into the car and get me home. I slept most of the time at home and was still unable to eat. I felt like crap. I was trying to take everything they gave me, even though I didn’t want to- thank you husband for helping me! My head just kept thrawping over and over again. And my back was still so bad that my poor husband had to walk into the bathroom with me. He took really good care of me, have I said that yet?.... All I can honestly remember at this time is that I would sleep, hurt, take pills, and feel sick because I refused to eat enough food for myself.

Day 5-8

I am home and mostly been sleeping, watching some random stuff, taking more pills from my husband and friends. A lot of the time I sleep, hardly eat anything except for one meal here and there. But with all of the help going to the bathroom and laying down I’m finally getting myself back together. I have slowly been learning tiny things on how to walk and wipe myself. One of those days my best friend called the hospital to get better meds to help with weird pains. And stuff slowly got better. VERY slowly but it is progressing.

Day 9-11

I am finally properly writing on here. I remember a lot of stuff that is finally happening and I can actually walk by myself sometimes. A friend of mine took me to the dollar store at some point. These 3 days have been so much better. I am in pain in my head and back but I can at least sit up and feel ok. My head pain is much much lower than it was in the past. Now it’s more of an annoyance than a lot of pain I suppose. And as for my back pain- it’s still sore but, I can handle it now. I can finally go to the restroom on my own for normal stuff and for showering. I can take a quick nap if I need to and I can actually do stuff if I need to. It’s a bit of a hassle to really cook but sometimes I can get away with making something in the microwave. Luckily one of the wonderful people that lives with us does the dishes, and my husband takes care of basics that I mention and ask him to do. Most of the time I can do very simple stuff now, I am so happy about that. I still can’t bend 90 degrees but I have taught myself to bend in easier ways that work from time to time.

In these days I had my first night without someone sleeping with me, and everything went well. I had to switch from the couch to the bed to the couch again but, hey progress is being made now. I slept in bed again and it worked this time. I also had a day where a friend of mine took me outside of the apartment and to a dollar store. Just to get out for a small amount and it was wonderful. My brain is still running a little slow but, it is getting better every day.

I am still moving slow but I am at least moving more. I am healing, I have spoken to some friends and managed to learn how to handle myself a little bit. I’m not taking as many or as crazy pills anymore and have a good schedule that works for me. So I’d say things are going a lot better by now. We have some more tests and doctors visits we have to go to soon but, I’m at least not scared of going to them now. Now that I understand what is happening I feel so much better. I now know what I have to do and know that I can control this, with the help of my wonderful Husband of course. I’m no longer scared to say something about this whole situation.

Day 18

Everyday up until now is around the same, a little bit of a heal and pain depending on what I’m doing. Today was a special day though- removal of the stitches. As dumb as that may seem, I was excited. I’m not going to lie, I was nervous. Let’s start with last night. First of all, I couldn’t sleep right. I had so many emotions going through me along with physical feelings. This is what my brain does in the middle of the night when I’m trying to sleep. Waking up either every 2 hours or 5 minutes all night know, I was tired by the time I needed to wake up. Because it’s time to wake up at 8:15am(but my body says “NO, YOU WILL GET UP AT 8am) and go get my head strings removed…… I’m not your average morning person if you can’t tell. Either way, I was still excited. So, wake up, get dressed, and get to the doctors office. Finally got there and got into the room, she comes in and says hello. People are amazed with the giant cut that looks like a “?” and I say thanks. She started removing the stitches and it hurt at first but just for the area that is around mu ear. After that, I couldn’t feel a thing while she was removing the rest and it felt GREAT when it was done. It took us about 5 minutes, if that, to get the stitches removed and it was amazing. These 5 minutes were wonderful, ok…. My head has already started feeling better just from getting those stitches removed and I love it.

I just wanted to let everyone know, this is about all that will be written about. I still have some speech therapy that I have to go to but, I am getting better with my talking. Everyday, I remember more words and then learn there are other words I have to focus on. Sometimes I stop and think, but I am remembering most of my words quickly. Sometimes my friends will finish sentences or fill in blanks for me to get the right words, but everyone is good about the issue. I think words and thoughts are coming back a little more every day, and my brain is coming back to the way it used to be. I’m starting to get comfortable with people again, and I am getting back to the old me, out in public and in general. I’ve learned that I like new things to eat and like old things, too. I also learned that my American Sign Language is still well-known (I got my Bachelor’s Degree a few years ago) and useful, and I can still do the simple things like making a puzzle. And the best thing about all of this is, I haven’t had a seizure yet!

A special thanks to:

My Epileptologist. You are seriously the most intelligent person in your field that I have ever met. And you have great resources.You’re my savior!

My Neurosurgeon and the others helping out. You are amazing with your hands and I will keep those photos forever.

My friends that have taken care of me and have pushed me through it all. You guys are truly inspirational and encouraging.

My Mom and Brother. You guys are who I needed and who I know, naturally, will always be there for me. Love you!

And my Husband. Thank you for everything. If it weren’t for you, I wouldn’t be able to walk, talk, and even be myself. You are the happiness in my smiles, the love in my heart, the support I need every single day. I love you, forever and always!

WARNING!!!!! Some photos are very graphic! Look at your own risk!