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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3 thoughts on “6 months after brain surgery

  1. James says:

    Hey Nicole! I’m literally laying in bed at 4:30AM (Arizona time) researching people’s cavernoma experiences and found your blog. I’m going in to the hospital at 8AM for my 2-4 day EEG monitoring and functional MRI test.. And I just can’t sleep! I wanted to say thank you for taking the time to document and share your experiences and challenges. It’s quite honestly the best reading I’ve done out of ALL the articles and people’s experiences that I’ve read. And by far the most helpful.

    I was diagnosed with two cavernomas in my left temporal area two months ago after an unwitnessed event where I passed out. They found an abnormality on a CT of my brain done in the ER and sent me for an MRI where both cavernomas were found and identified. I’ve been having issues with staring spells where I lose time and trouble making sense of words for a while now. I’ve since learned from the doctors I’ve seen that these are most likely seizures.

    So I found a lot of comfort in your blog because all of this has changed my life hugely, and it tends to give you this feeling of being alone. Your words were an awesome reminder that I’m not and that normal people go through this. I’m a Firefighter and have been taken off of the Fire Truck and placed on light duty at this point, as well as lost my driving privileges. It sucks!!!!!! But the Fire Department I work for is taking really good care of me and my Doctors are trying to get all of these tests done quickly so they can prove the cavernoma(s) are where the seizures are coming from, and take them out so I can get back to work doing what I love. I’m really hoping this EEG monitoring will show that so I can get this over with! Anyway I’m sorry for the long message, just wanted to say THANK YOU! Your words were so helpful and comforting, and laying here at 4:45 in the morning (unable to sleep) I’m actually feeling better. So thank you thank you again! I hope all is well in your world Nicole.

    Respectfully and sincerely,
    James G.

    Like

    • nicolerutherford says:

      Hi James,

      Thank you very much for your kind message. I’m sorry you are in a similar situation I was in, and I’m glad this could help you out. I know how you feel about being alone… when you deal with something in your own head that you can’t really explain, you can feel really isolated. But, now you know, you’re not alone! Maybe when you go into the hospital for your tests you will meet other people in a similar situation— I highly recommend reaching out to them if you do!

      As for myself, I am now 1.5 years post operation, 2.5 months off of my medication and I haven’t had a single seizure since! I even got my driver’s license back!

      I guess that by now you have finished your hospital stay (I’m sorry I didn’t see your comment earlier) but I hope that you had fortuitous results from your tests.

      Please do not hesitate to reach out again if you have any questions or thoughts about your potential surgery, or living with your cavernomas.

      Wishing you good luck and good health,

      Nicole

      Like

      • James says:

        Hey Nicole!
        Finished my hospital stay and they weren’t able to get enough information from my eeg to make a good determination. They’ve put me on medication now, which makes me feel horrible, and then I follow back up
        With them in a month. I guess in order to get these things taken out there has to be some good prof of what’s causing the problem.

        So no we play the waiting game and see.
        So stoked to hear your news and how well you are doing!! Hope to be sending messages like that soon enough! Thank you for taking the time to respond, I will keep you posted!

        Like

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