6 months after brain surgery

Six months ago I had brain surgery. If you want to know the details of why and how, please see my earlier post. 

Most people won’t have to go through a brain surgery— but for anyone who does, or for anyone who’s curious, I’ve decided to write down a bit about my experience. It’s a weird train to ride, and here you can learn about it vicariously.

Before my surgery I had about 8 months of preparatory work: isolating the problem area through EEG tests (where you have wires hooked up to your brain so electricity in your brain can be logged), getting neuropsychological assessment, having special MRI’s to track your thinking process, etc. etc.

However, the biggest challenge was preparing mentally to have my skull cracked open and my brain tinkered with. That was a crazy challenge, but I stayed calm right until I was outside the operating room; I watched the doctors and nurses prepare everything and I burst into tears. They came and held my hand, reassured me and handed me tissues.

As I was wheeled into the operating room, they transferred me onto the operating table and all gathered round, holding my hand and looking down at me like it was a strange, sombre good-bye.

They looked at me and said “Are you ready?”

I said “Yeah but….” and they stared at me in anticipation, ready for me to say something meaningful, but all I said was “the other bed was a lot comfier.”

They all laughed at me and then the anesthesiologist told me he was ready to start the concoction to put me to sleep. He gave me one shot, and I felt all my organs float warmly inside me. He then said he would inject the second round…and then, I woke up in the ICU.

My head was screaming (okay, maybe a 7/10 in pain, but it hurt) and I remember telling the nurses about it. Everything was a blur, but I know they gave me something. Then, my family started coming in. My mom and dad first, followed by my then-fiancé and my brother. I know even in that point of delirium that I caught my brother in a lie, and we laughed about it later.

I was encouraged to move around very quickly— hours after the surgery they removed the catheter, and told me if I needed to go to the bathroom, I needed to do it myself.  So, I quickly started walking (with my slip-proof socks, of course— so comfortable) and then by the end of the day was transferred to a regular hospital room.

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The morning after my surgery: I was able to pull of a great Cyndi Lauper look.

 

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Later on in the day when my bandages were removed. I had asked the surgeon to keep as much hair as possible because my wedding was in five months, so I woke up with a funny little braid!

 

I learned some weird things during the process, so I thought I’d share some stories.

screen-shot-2016-11-14-at-2-54-27-pm Don’t wear nail polish on the way into surgery

As it turns out, nurses and doctors will often check your circulation by pressing on your nail beds; if colour doesn’t return quickly— or alternatively if your nails are starting to look a bit blue— it means you’re circulation isn’t running properly and you could be in serious trouble.

I didn’t know this when I went in, and in fact intentionally painted my toe nails blue the day before because I figured I would be looking at my feet for the next little while. It was quite a process to get the polish off the morning of my surgery ( the hospital carries some nail polish remover, but it’s not great), and afterwards when my nurses checked up on me, I had more than one looking very concerned when they looked at my toes…

screen-shot-2016-11-14-at-2-54-35-pmAnything too stimulating will tire you out (no phones, books or TV for me!)

I don’t mean stimulating like laser tag while rollerblading; I mean have a conversation that is too long (let along with more than one person), or looking at magazine photos. Much like having a concussion, your brain is going to have trouble processing things, and if you try to do so too quickly you’re going to be exhausted and slow your healing process.  When I was released from the hospital, simply driving to the hotel was so intense; cars, people, sights and sounds. I needed a nap immediately.  Much like a bad concussion or even a bad hangover, too much light really bothered me. My dad went out of the way to get me a pair of sunglasses and then snap one of the arms off so I could walk around and not get an instant headache.

So, for entertainment I would doodle ( my creativity was on HIGH after the surgery), nap, or take short walks.

 

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Me, wearing very cool, one-armed sunglasses altered to accommodate my scar.

screen-shot-2016-11-14-at-2-54-52-pm Anesthesia has crazy after-effects

I stayed in Montreal for a few days after my release so that my doctor could remove my stitches after the first week. I had to take pain medication, anti-inflammatory medication, anti-nauseam meds, and a few different meds for my stomach (it’s unhappy for a while after any surgery). But man, after the operation the worst part is the effects of the anaesthesia.

I have never had panic attacks, but I found myself having very strong ones after I was released from the hospital. Honestly, sometimes I still feel them coming on, but they aren’t as intense or as frequent.

I also had horrific nightmares— they were so  violent and gory that even repeating them was a terror. This lasted for a couple of months, but I know from other people who had brain surgery that this is actually pretty common.

screen-shot-2016-11-14-at-2-54-56-pm Patience is a virtue, but God-damn it sucks   

After a brain surgery, you’re supposed to be on light-duty mode, with a lot of rest for 3-6 months. Now, that’s pretty hard to do when after two weeks you feel like you can take on the world. Obviously that’s just a short-lived feeling— for the first couple days if I walked five minutes I needed a two-hour nap— but it get’s really frustrating with how much you can’t do.

Don’t lift things, don’t read things, don’t go on your phone, don’t watch TV, etc. etc.

I am a very restless person, so this was very difficult. But, I am also a very stubborn person: two weeks after my surgery I was adamant about going to my convocation ceremony, and convinced my family to get up early and drive for two hours to attend.

I even had to come up with an interesting braided hairstyle to weave around my scar.

Needless to say, by the end of the day I was exhausted. Brain injuries are tricky, too, in that there is a delayed response to an activity. So, I might do something on Monday, but not feel the repercussions until Tuesday or Wednesday. So, after my convocation for the next few days I was wiped.

 

screen-shot-2016-11-14-at-2-55-05-pm You’re gonna feel crazy, but you’re not crazy

I don’t know how I got such kindness, but somehow or another I have a husband who is a physiotherapist, and who specialized in concussions in his graduate project.

Neurologists are obviously very well educated, but they tell you more of what to do before the surgery— not afterwards.

If you’ve ever had a concussion ( I had one as a kid ) then they are kind of comparable because I brain surgery would be a very very acute version of a concussion. So, sometimes things just don’t make sense, or you don’t feel normal but you can’t pin down why. I actually felt like I was going insane, but then my fiancé found some important papers from his course-work that helped me organize my day. In these papers, tasks were given points (kind of like weight-watchers) and you were only allotted 10 points per day. So, for example, computer work would be 2 points per half-hour (because they were so straining).

I never received any information about my post-surgical behaviour (other than to rest) from neurologists, so it’s definitely something to look into. The cherry on top was that one day my fiancé brought me little guide that literally said “You are not crazy!” and I almost cried from that alone.

 

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Six months after surgery, my scar is healed up and most of my bald spots are filling in. My skull still feels weird, almost loose and a bit numb, but apparently that stays minimum a year.

I am back to my old self: I can work on the computer, exercise, occasionally have a drink, and have a day full of tasks without needing a couple of naps.   I’m starting to feel like a normal, stronger version of myself again.

But, before I forget, I want to give out some tips that I learned:

 

screen-shot-2016-11-18-at-10-10-02-amWashing your hair with baby shampoo

After surgery, you can’t wash your hair for two weeks. That is super gross considering the blood, stitches, and who knows what else is on your head. BUT, it’s the best feeling in the world when you wash it. I was told baby shampoo because it’s gentle, and after the first wash I felt great. I realized that if I continued using the baby shampoo and spreading out the washes that my hair seemed a lot healthier. Make sure to really massage your scalp (as if you’ve had a while between washes and you want to work it out) and I swear you will see a big difference. Also try to avoid using too much conditioner— I couldn’t use it for a while and found that my hair was still healthy.

 

screen-shot-2016-11-18-at-10-09-53-amTap into your creativity!

While your brain is healing, you’re thinking in a different way. Also, you’re not allowed to be distracted my computers and television, so I think this gives access to your creativity. While I was healing I did paintings, arts and crafts, origami, and even adult colouring books. Honestly, it was AMAZING and I wish I had written down more ideas and done more sketches. If you are ever in this state, take advantage of it!

 

screen-shot-2016-11-18-at-10-09-43-amChamomile tea is your best friend

I mentioned that after the surgery I had panic attacks and really bad nightmares. I also just couldn’t sleep very easily. But, I found that if I was feeling very panicky, or if  I was going to bed, that having a big glass of chamomile tea really helped me to relax and rest. I really, really recommend it.

 

screen-shot-2016-11-18-at-10-09-34-am Remember that it’s okay to rest

Sometimes I would be rattled with guilt over not doing anything— I had just finished a master’s degree so I guess I was used to being very busy. But just remember, it’s okay to rest at this point, and just take advantage of it. If you’re worried about it, think about a long and slow project you could work on, or just work on how good you are at napping.

 

That’s all for now— if you every have any questions please let me know! I’d love to share my experiences to make others feel assured or educated.

 

All the best,

 

xoxo

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Brain Surgery— Part 1: why did I need surgery, and how did I get it?

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One day after brain surgery— I had asked them to leave as much hair as possible because I had my wedding in 5 months, so they made me a little braid to go around the scar!

On May 20th I had a cavernoma (a benign cluster of malformed veins) removed from my left temporal lobe. That is the part of your brain that controls language, communication and memory, amongst other things.

The cavernoma had been triggering seizures, and it was time to come out. I had been experiencing seizures, migraines and auras (symptoms that are almost a seizure, but not quite… these can be experiences like seeing something, smelling something, hearing something or just having an abnormal sensation) for TEN YEARS before I could get the help I needed.

I’ve learned a lot in the process, so I thought I’d share some of my insights about having epilepsy, and pre and post surgical experiences.

However, this was a bit of a long road, so I have decided to split it into two parts: Part 1: Leading up to the surgery (it was a hell-of-a-long path) and Part 2: 6 months after brain surgery.

WELCOME TO PART ONE!

But first, I had to have brain surgery because of my epilepsy. Let’s learn some basics about the neurological disorder:

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So what did I learn?

screen-shot-2016-11-14-at-2-54-27-pm Always trust yourself!

It took 2 general practitioners, 1 blood specialist, 1 hormone specialist, 7 neurologists and 2 neurosurgeons to properly diagnose and treat my epilepsy.

THAT’S A LOT OF DOCTORS.

Those doctors are obviously educated people, but you know what? No matter how much they have trained, they don’t know your body and mind like you do. If you think “something is wrong, I don’t feel good” you’ll know that a hell of a lot better than someone who’s  never met you or experienced what you have experienced.

Trusting yourself when you have a seizure disorder can be pretty counter-intuitive; if your body and brain are constantly doing things you can’t control, one of the hardest things to do is trust yourself. I found it all to be pretty damaging to my confidence, but one thing I stuck to was knowing that something was not right.

When I was 15 I started having weird neurological problems. In hindsight I think they started as migraines, and sometimes auras. For me, this was being blinded from seeing spots (like how you can’t see when someone has taken a picture of you with flash), along with not being able to feel my body correctly. For example, I couldn’t feel my fingers any more. I would be very, very nauseated and unable to think clearly. I wouldn’t actually get a headache until a few hours after experiencing this. When the headache came I was overjoyed, because I knew that soon I would vomit and the feeling would subside. Gross, right?

When I tried to get this resolved, no doctor thought of my head. They thought I had a low blood pressure (people in my family have a low blood pressure disorder) and that I was simply having fainting spells.

TMI time, but when I was 20 my menstrual cycle simply stopped. I checked many times if I was pregnant and I wasn’t. When I went to a hormone and blood specialist, I was told that I probably had an eating disorder (which I didn’t, I’m just kind of small). I was also told that my hormones seemed fine, and that there wasn’t a reason otherwise.

When I was 22 I was finishing my undergraduate degree and was studying Japanese and German as elective courses. I usually have an aptitude for languages, but suddenly I had these strange [near] fainting spells where I was overcome with exhaustion and heart racing simultaneously and I would need to sit down. As I recovered from the sensation, I had trouble speaking or remembering anything. I went from being a language expert to having no memory of what I was learning— I would literally need to relearn everything before a test and then write it quickly before I forgot what I’d learned the next day.

Again, no suggestions from doctors. All I knew was that it was becoming more and more frequent, going from once a month to three times a week.

Shortly after graduating I woke up in the hospital with a splitting headache and a swollen tongue. Last thing I remembered I was having dinner with my family.

The nurse told me I had had a seizure. I almost laughed at how ridiculous that sounded. Only weirdo’s have seizures, right?

But, that’s what happened.

Doctors had finally taken scans of my brain when I was brought into the emergency.When they looked at the results they diagnosed me with brain cancer.

At that point I was pretty stoned from drugs and the rush of dopamine that floods your brain after tonic-clonic seizures (these are the ones you see on TV where you collapse to the floor and shake).
It was probably the best possible time to be told you have cancer, but obviously my family was devastated.

However, a second look at a more detailed scan revealed that it wasn’t cancer, it was a thing called a ‘cavernoma’ a cluster of malformed veins. It was benign, and had likely been there since I was born.

The cavernoma was located in my left temporal lobe— the part of your brain in charge of language and memory. This explained why I was having such trouble communicating and with memory. Additionally, it was situated near my pituitary gland, the gland which controls your hormones. As soon as I started taking medication, my menstrual cycle started again.

Long story short: I WASN’T CRAZY!!

screen-shot-2016-11-14-at-2-54-35-pm You will lose people

Adversity acts like a sieve in your social life; when times get rough, a lot of people you could never imagine hurting you walk out of your life. But you know what?  Fuck ’em. At the same time they walk away, a lot of amazing people also reveal themselves to you— and some of them are completely unexpected.

For me, many close friends— including my best friend of over 10 years— decided the stress of dealing with my illness was too overbearing. I’m gonna be honest, I was probably a bit of a basket case, but I was adjusting to new medications ( they are NOT easy to get used to) as well as dealing with the trauma that comes with knowing you have a brain disorder. Seizures affect you mentally and physically, and on top of that the plans I had spent years developing and prepping for now had to be cancelled because of the need to balance out my life. I was absolutely devastated.

Other people just don’t know how to handle the swift differences you face. I lost my driver’s license, but I also was advised not to drink. So, I was the sober friend at parties but still couldn’t be the designated driver.

I was literally told by my previous friend that she didn’t want to go to parties with me because she didn’t want to “babysit me.” I was so hurt by that comment that I felt like I had been slapped— I couldn’t think of anything to say.

From then on I was too scared from that comment to ever admit to her that I was having a seizure, even though they happened often. One time we were in a conversation and I spaced out from a seizure. I found her staring at me and I tried to recoup by asking her a question regarding something I remembered her saying. She got so annoyed with me because, I guess, she had just answered that question. She told me I never listened to her, and stopped speaking to me.

So, when people you could always lean on walk out on you, you are winded from that unexpected damage.

It will happen. I promise. Some people just don’t know how to handle it.

BUT

Other people also step forward and show how amazing of a friend they can be. These varied from people down the street wishing you the best, to people living far away sending care packages.  People I barely spoke to suddenly came forward with an infinite amount of support and encouragement. This included my neighbour that I hardly spoke to, and a girl who I went to high school with but never really hung out with; suddenly they became pillars of kindness in my life, and showed me that kindness can come in the most unexpected of places.

screen-shot-2016-11-14-at-2-54-52-pmBe extremely persistent

Having a neurological disorder is a tricky beast to wrestle with. For me, my seizures were not physical except for the one tonic-clonic seizure. The rest were mental seizures that, even with medication,  came to me as a sudden confusion in communication. I wouldn’t be able to understand people, let alone feel like I was producing something comprehensive. So, I usually just nodded and smiled unless it lasted long enough that I would be able to sputter out that I needed a minute.

My symptoms started to become worse and more frequent. At one point I couldn’t understand my own thoughts, and then I would start projecting my non-sensical thoughts onto others;  I would literally “see” them saying those thoughts. I wouldn’t remember what they said a moment later, but it made me feel like a psycho.

The first time I was unable to understand my own thoughts I was so terrified that I checked myself into a hospital. I waited many hours to simply be told that since I was already diagnosed as an epileptic nothing could be done. I might have to wait 8 months for an MRI but really, they said, it was just stress from my grad program.

I had one neurologist that I started seeing in Ottawa— he was well regarded but had the bedside manner of an old wolverine prowling for money. Without listening at all to me (he literally asked me why I was in his office, clearly not reading my charts that sat neatly on his desk), he then tried to prescribe me a new medication which I reminded him I was allergic to. I was very annoyed because I had waited 8 months to see him. He then tried to get me to take valium, and I lost it telling him I didn’t need a calmer, I needed help. I stopped seeing him.

 

If I hadn’t already dealt with so many jaded doctors I might have taken his advice and tried to be calm about it. But even in my calmest moments I felt my seizures becoming worse and worse. I was going to school in Ottawa, but I called my neurologist in Victoria, B.C.— he was the only one who took my feelings seriously, a true gem of a man. I told him I was coming to B.C. for reading break (my boyfriend was still in B.C.) and if I could get an appointment. For some miraculous reason, he gave me an appointment after his office closed.

When I spoke to him he told me that my symptoms were pretty strange and got me an MRI WITHIN TWO DAYS.  The MRI didn’t show anything too interesting, but still he got me a place in one of Canada’s top neurological hospitals, located in Montreal, to stay for up to two weeks for monitoring.

So, for the first couple weeks of my final year in my grad program, I stayed hooked up to electrodes in the Montreal Neurological Institute so that my brain activity could be monitored. If I felt a seizure come on I would push a button and the nurses would check on me, check how much I understood, and then later the EKG monitors would be able to look at the time I had pushed the button and assess my brain waves.

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Getting electrodes glued to my head at the MNI in Montreal

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I couldn’t leave my room often because I had to stay hooked up to a wire that hung around my belt

The purpose of all of this was to make sure that my seizures were, in fact, coming from my cavernoma. Cavernomas are actually more common than you might think, and many have no symptoms, so it was a safety check to see if my seizures weren’t actually coming from a different part of my brain.

Luckily, the cavernoma was the source, and so the hospital decided to conduct some more tests over the next few months to make sure I was a surgery candidate.

In the meantime they referred me to another neurologist in Ottawa. He was also very highly regarded, but when I finally got an appointment he called me in and walked about with no shoes on, without introducing himself, and again, without listening to me. After about 20 minutes of me having to repeat myself and be battered with condescending questions and comments, I stormed out.

Most neurologists, no matter how educated they are, have never experienced a seizure themselves, so I can understand that gap in empathy, but if they treat you like you’re nuts I really can’t stand it.

After many more tests ( I will detail them in a different post) the neurologists discovered that my cavernoma had been bleeding, and damaging surrounding brain tissue. This  was why my seizures were getting worse, and would only continue to get worse as it bled more. If I left the cavernoma in, there was a small chance it could start bleeding heavily and cause a stroke. It was also located in a spot that was not close to very important control centres in my brain, so it would probably be very safe, as far as brain surgery goes, to remove it. I was warned that I may need some speech rehabilitation if things didn’t go perfectly, but  without much of a choice I opted for surgery.

Oh yeah: I WASN’T CRAZY—AGAIN!

 

screen-shot-2016-11-14-at-2-54-56-pmTalk to people in the same boat!

As you may have gauged, it’s pretty difficult to go through the mental and physical aspects of epilepsy. For example, after my seizures I would often be overcome with emotion and just burst into tears for no reason. I would feel absolutely crazy.  Additionally, as a student in a journalism program, my struggle with communications was overwhelmingly frustrating and something I didn’t want to admit to most of my classmates.

Sometimes, too, I would get so frustrated from other people’s complaints. One time I went to a baby shower of a family friend, and the mother-to-be complained to me with such sorrow that sometimes she felt nauseous. I can understand that frustration, but I was staring at her just quietly thinking “at least you don’t have to have brain surgery in two weeks.”

However, I was blessed to have met three amazing people the first time I stayed at the MNI. They were all men of different ages that were experiencing their own seizures, and were hooked up to the electrodes like I was. While they were in a different room, I would be able to reach their room while still being hooked up to the monitoring machine, and in the evening we would all sit around and talk and feel a weight lifted off of our shoulders as we finally discovered we weren’t alone! Even though we had very different causes (one had a brain tumour, one had a scar in his brain, and one had severe seizures for an unknown reason), we all had similar thoughts and feelings, and it was so powerful to be able to talk about it. We called our nightly talks our “therapy sessions.” We still talk fairly often, and they even attended my wedding!

screen-shot-2016-11-14-at-2-55-05-pm You are so much stronger than you think you are

If you need to go through brain surgery, or even if you are just dealing with troubles of your own (health-related or otherwise) that only you can see and feel, you are a strong mother fucker.

Think about it: if you break your leg, you get a cast and crutches. People see that, they know to open doors for you and they know that you are strong because, hey, your leg hurts a lot but you’re out and about doing things.

If you have something going on internally it’s way more difficult; people can’t see what’s happening. And oh boy, if it’s in your head and affecting you so that you are acting any way abnormal, the stigma around mental health makes it so much harder for you to A) talk about it and B) for other people to tolerate it.

I have found myself talking about my experiences a lot, and while it’s probably annoying for some people I think it’s really important to talk about it and make it more “normal” or at least better understood.

In any case, just know that even when you feel so inadequate, weak, stupid, sad, angry or confused, you are still walking about doing things— you are your own rock and that is a rare miracle. And you know what? You’re not alone!! Remember even if you feel like a freak, you are one of many who can talk to you.

 

That’s my summarization for now!! I’m really excited to do my post-surgical piece because there are many stories to tell. In the mean time, if you have any questions or comments, I’d be happy to help!

 

xoxo

 

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