• Kelsey Taveira

What to expect after Brain Surgery

First of all, congrats!!! You did it! You are done! You went through one of the most serious, terrifying and dangerous surgeries possible. It took strength, courage, bravery and you came out of it strong and ready to recover and get back to normal life as soon as possible.

It takes a long time to recover. I know that probably sounds obvious, but this point took a long time to sink in. I got really impatient with myself. I kept wondering, after just a few weeks, when I’d start to feel like myself again. At three weeks, I started to panic. In the end, it took months – months! – before I felt normal. It was finally at my 2 year mark where I was like WHOA that was intense. And guess what things still weren’t exactly where they should be. And that’s okay. Healing takes time. Be patient with yourself. I had my second surgery January 23, 2018 and that recovery was a lot easier as I knew what to expect and also my surgeon was able to use some of the same incision and changed things from how the first one was done in order to make this one easier and less painful.

Pain meds are your worst and best friend. They help the pain but you will feel like a zombie. I was loopy from the medicine, and slept for days. DAYS. I could barely stay conscious for more than a few hours, but I kept fighting it, which was dumb. Just sleep it off. You’ve earned your rest and who doesn't love an excuse to take as many naps at any time throughout the day.

You will have the attention span of a goldfish (because of the aforementioned medicine). TV shows will be really difficult to follow, and reading books or email will be absolutely impossible. Even the plots of movies you’ve already seen will be absurdly confusing. Have you tried watching Adventure Time? The episodes are only 11 minutes long, and they don’t really make sense anyway, so you might want to check them out. Make Netflix your friend and at least when you have to change the series you can always go back to recently watched or continue watching.

It might hurt. A lot. This should probably fall right into the “obvious” pile, but I did not anticipate this the first time. The thing is, getting your head drilled actually causes pain. I mean you did just have a piece of your skull removed, a foreign tumor removed and then your scalp placed back and stitched up. People will tell you that the brain doesn’t have any nerve endings, but your scalp and your skin do. Now is not the time to wait it out or to be tough. Because you could end up with a headache that lasts for – I kid you not – days. Take your damn painkillers. You can be macho at a more appropriate time, like at the grocery store or your child’s birthday party. (Also, if you start feeling really badly, or if cerebral fluid starts leaking out your nose or ears, call your doctor IMMEDIATELY). Listen to your body!!! Each surgery I had to go back to ER because I just knew something was off. The first time I was ok. This past second surgery I found out days after being released and having unbearable pain that no pain killer was fixing I had gotten a blood clot in the back of my brain. Thank God I went to ER and they found it!!! Blood clots are a risk of surgery but on top of surgery, being female, the brain tumor, I had recently went through IVF (in vitro fertilization) to freeze my husband and I's embryos so was on a HIGH HIGH dose of hormones which caused the clot. So stay on top of pain, symptoms and act accordingly.

Nerves take a long time to regrow. When your surgeon cut into your skull, they also cut into a lot of tissue and nerve. Over the next few months, as these grow and heal, they’re going to be crazy sensitive. Every time I shivered, it felt like it reverberated straight across my skull and down into my brain. I’ve found that the best way to calm things down was to gently press a hand onto my head. Just a bit of pressure helped soothe my nerve endings. Also, consider wearing hats if it is cold or windy. Also your face will feel when those nerves are growing. I told my mom it felt like little people inside my right cheek messing with me!!! It is annoying and there is nothing you can do about it. I just think to myself its healing and growing back together up there.

Your senses might reset. People told me about this, and it still amazes me of some stories I have heard: whenever the brain is touched or traumatized, your senses are affected. In my case, I noticed that my already strong sense of smell turned even stronger. I could smell things from afar and also they intensified. I also became acutely aware of the sound of my own voice, which sounded strange and foreign to me. Like, it was annoying me because it didnt sound like me haha. Sometimes it still does but probably just because I talk a lot and lose my voice easily. This changes though and things normalize after a few months, and I’ve got to admit: this is one of the cooler after-effects of brain surgery. This second time around I didnt get any new effects or super powers like I wanted.

Now those pain killers that are helping are also messing with your body. You ain’t gonna poop for like, a week. The lower intestine is the last thing to wake up after major surgery. So take all those stool softeners the docs are giving you, okay? TAKE THEM! TMI…..too bad, you will know what I mean soon enough!!

Steroids can you turn into a hormonal, rage-filled beast. The good news: they stop your brain from swelling, so you don’t die. The bad news: they transform you into the Hulk. Some get acne, I didn't but I swear its making my facial hair grow (no, not a beard)haha…but my eyebrows need to be plucked everyday and I feel like my forehead is getting random hairs. I dunno maybe I am just insane! And another thing they make you want to eat everything in your fridge. Here’s a tip: try eating lots of lean protein, fruit and veggies, and accept that you might gain some weight and get a little pudge. After my first surgery I ate EVERYTHING! Tons of crap and especially chicken pot pies, like they were only going to be available on earth for another week! I mean it wasn't healthy thats for sure!! So from experience be responsible, but don’t try to limit your caloric intake or diet (I can’t remember why – but I think it actually has a negative effect on muscle mass). Remember: it’s not permanent. You’re feeling weird because of the medicine, it will be over soon. But speaking of being over soon, weaning off the steroids is a B*t*h!!!!! It is really hard to get off of them, at least for me, even just down 1mg it gives me horrible headaches and just a feeling of not feeling good at all!!! Currently, I am still on 2mgs.

Scar tissue is a bitch. Check with your doctor on this one, but after you’ve healed completely, consider massaging the site of your incision to help break up the scar tissue that forms around it. I also rub frankincense oil on it and behind my ear and neck 2-3 times a day. A little bit of scar tissue protects your skull, but if you have a lot (like I have) you might feel an uncomfortable pulling across your scalp.

Your head is going to look like a medieval dungeon. There’s the matted blood in your hair, and the weird jelly they put on your head, and the metal staples or sutures holding it all together and … ugh. Oh, and you’ll have weird scabs on your scalp, as well as some bruising. As gnarly as all that sounds, it is, apparently, normal. And even worse the first time washing your hair is scary!!! I am very lucky to have friends that are hair stylists and own salons because each time they have helped with my first few washes! (Cailey and Jen xoxoxoxo)

Obviously, this goes without saying, but you shouldn’t pick at anything. It is going to feel overall just…..WEIRD!!!!!!!!!

You are going to wake up crazy thirsty from the anesthesia, and no one is going to give you water, because they are concerned you are going to throw it up. So instead, you get to much on ice chips in an attempt to quench your crazy thirst. And then you will probably throw up anyway. I actually didnt either time but a lot of people I have talked to do. So just be prepared.

Do you speak more than one language? I don't. Although my husband is Portuguese and I am learning it, he joked about having my surgeon put in a portuguese language chip and I would come out fluent. That would have been seriously amazing!!!!! Its not possible, duh we asked haha! Anyway if you do speak multiple languages, you might get confused as to which language you are speaking, and to whom. I have heard this also happens to lots of people also! Which I think is pretty cool.

Don't feel bad asking for help. Actually, for that matter, get someone to take care of you. I am lucky to have amazing parents and a husband that are the best and been so helpful I honestly do not know what I would do without them. Also so many friends that were willing to help however they could. Swallow your pride, and rely on other people. You will be in a daze. Making yourself food, getting dressed, washing your hair, are all going to be impossible without help. I was 30 when I had my first brain surgery. I can’t remember ever needing my mother more. Love you Mom! My second surgery I was lucky to have a husband that literally did not leave my side and really made our first year of marriage interesting….there are absolutely no boundaries or surprises anymore. Having a child one day…..thats nothin!!!!!!

People in your life are going to react to this in different ways. The crazy thing is, you won’t be able to predict who’s going to do what. Some of them are going to be amazing. They will come to the hospital and visit you and send you chocolate-covered fruit and call you to see how you are doing. They will stop by your house with food and presents and if they are grossed out by your head, they won’t show it. And some "friends" … well, some of them will drop off the face of the planet. They’ll say or do weird and insensitive things. They’ll dismiss what you’ve been through. It may hurt your feelings, it may be infuriating, it might just confuse the hell out of you. Whatever the case, try to go easy on them, okay? Some people are just bad in a crisis. Besides, you’ve got bigger things to worry about.

Friends are going to look to you for cues on how to act. If you don’t want to talk about it, they won’t ask. If you are really open, they’ll be receptive to what you have to say. Decide how you want to deal with this thing, and you’ll find that everyone else will likely fall into step. This time around obviously I am an open book and am holding no information back so people I can tell feel more comfortable asking any question that after the first time would have never asked. I feel being open and honest and sharing all this information is just overall easier but also the fact that you are reading this and it can hopefully be beneficial to you is my main reason and purpose for all this.

The entire experience will be weird and surreal. My surgery first surgery was more than 2 years ago and my second was just a month ago, and I still haven’t completely wrapped my head (hehe) around what happened. Things seem to fall into two categories: “before my brain surgery” and “after.” That’s just how it is. It’s a weird thing. I have brain cancer…and thats that. This is my life and this is how I am deciding to move forward. I have accepted it and am turning it into the most positive experience I can!!

For a very brief window of time, everything in your life is going to make sense. The petty things that bug you will fall away, and you’ll just be really grateful to be alive. Enjoy that feeling for as long as you can. Know what you went through and know it will all work out!! Stay strong, stay positive, don't stress the small things and remember everyday you are here, others have it worse and to make the best of your situation. You never know who you may be able to help and inspire!

Second surgery battle wound!! #braintumorsurvivor #warrior #battle #braincancer #ucla #fightthefight #nevergiveup #positivevibes

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Redondo Beach, CA, USA