Brain surgery kinda sucks

It’s taken awhile for this blog post to come together, and I wish I could say that’s because I’ve been out living my life and since surgery I’ve had this amazing burst of energy and I just haven’t had the time, but that’s not really true. Surgery was hard, it was painful, and the recovery took everything out of me. Just as last time I was admitted into hospital the night before, I had to have blood tests done, a chest x-ray to make sure my lungs and heart were all looking good, and an ECG to check that my heart was actually functionally well. Thankfully everything was perfect. My surgeon came and saw me, and he made some last minute changes to the plan. Originally he was just going to go in and widen the posterior fossa and take some more of my C1 vertebra out, and leave the dura patch that had been put in during the first surgery alone. But now he wanted to replace that patch with some of my own dura matar from another section of the membrane (the original patch was synthetic), which meant either an extra incision, or a really big one. In the end he went with a really big one.

It was nil by mouth at midnight, except for a little sip of water to take my morning meds, and it was a bright and early start because I was the first surgery of the day. The nurses had me up at 6 am and I was showering with an antibacterial soap and then donning the wonderful gown and compression stockings. Quicker than I realised I was saying goodbye to my mum and Courtney and being wheeled into he operating room. The theater that I was in didn’t have an anesthetic bay so I had to be put under in the actual room. I saw the bed, a whole load of people that I assume were the operating team, and a huge computer with a whiteboard next to it that said “DO NOT SHUT DOWN!! WILL BLOW UP!!” so naturally as the pre-meds were setting in and I was feeling groggy I asked, “do you think that’s true?” and the anesthetist said that he’s always wanted to test it. The last thing I remember as I was going under was when they told me they were just putting the mask on me they told me it was just oxygen and I replied with “you’re lying” and he looked at me amused, chuckled, and said “yup” then continued to put it on and tell me to breathe.

Compared to last time, waking up was a lot better. I’m not sure if it’s because I warned everyone that I usually vomit after surgeries and they managed it really well, but I didn’t throw up once! My points of regaining consciousness are completely different. The first time I remember being in recovery and hearing the people around me, and then being groggy and out of it for almost two days. This time however I was awake and making faces at Courtney for about an hour before I begin to remember things. But my alertness came back quicker and I was wanting a cup of tea that night and managed to sit up and have half of it with the help of those around me.

The thing about brain surgery is that it leaves a pretty big wound in a pretty inconvenient place. My staples went from the base of my hairline to the crown of my head, right down the middle of my skull, exactly where you would lie when you’re lying on your back to sleep. Once mum and Courts had left that first night my pain was still pretty controllable and I was more concerned with watching the first episode of the new season of Plant Earth. There was a whole drama with the TV in my room, and yes, I was in ICU and there was still a TV. Crazy I know, but this surgeon only works out of private. But my nurse was flipping amazing! After not getting it to work, she decided to move me. I was fine with not watching it but she was determined! So we made the journey through ICU, me in the bed, her pushing, and another nurse pulling. We made it across and I began to watch. I only made it half way through the episode before my pain became unbearable and I was a blubbering mess, but she got it under control and set up a PCA pump so that I could push it rather than buzzing her whenever I needed meds.

The night in ICU was manageable. I’m not going to go so far as to say pleasant, or comfortable, but I made it through. My night nurse was again a blessing, and for being five months pregnant and standing most of the time I commend her. People really don’t give enough credit to the good nurses. By the morning my new nurse was a firecracker of a lady running between patients, helping me get my breakfast ready and cutting up my banana into my cereal. Occupational therapy came and I stood up and walked and then there was a drama about being transferred up to the ward and not having enough beds and timing and my sister and best friend arriving at the same time and them going to the ward when I was in ICU but some staff thinking I was in one place when I was in another. Eventually I was out of ICU, on the ward, still on the PCA, oxygen, and fluids, but out of ICU.

The medication that was being used through the PCA pump was fentanyl, hence being on oxygen constantly. One of the side effects to it, that they warned me about even before my surgery, and that I experienced in full swing was nausea. They can control this as best as possible, but when I was on the ward I had managed to land in an unlucky time for a patient in pain. You see I was stuck between a rock and a hard place. My pain began to get increasingly worse so I was pressing the button to administer myself a dose of fentanyl, and because my pain was getting worse the pressing more insistent. The draw back of this was the nausea started, and it wasn’t something that would set in after a few hours, but immediately. So what did I put up with? Give myself some pain relief but then have insane nausea, or suffer through the pain but have no nausea? The pain wasn’t a mild throb either, it was a grab at your head, doubled over, pain so bad it blinds you, type of pain. If you’re thinking, “why didn’t you just call a nurse?” well I did, multiple times. Here’s some hospital policies, nurses can only give you medications if it’s been written on your chart by a doctor beforehand, so if you’re having a new issue they can’t just hand out meds, you have to be seen by a doctor first who has to write up the medication on your chart and then only a certain type of nurse on the ward can administer the medication. The unlucky situation that I was is was that the doctor on my ward had an intern following him and doing most of the work and taking twice as long, so I was in this tunnel of pain and nausea for what seemed like hours, but was probably closer to one.

A very apparent fact about brain surgery is that it’s not easy. The pain is consuming. That hour I wanted to give up. If I could’ve I would have been clawing at my head to reach the parts that were painful and pick them out, but I was in too much pain to move. But I wasn’t alone. My sister and best friend had been with me at the time when the pain started to reach it’s peak, both of them had been trying to get the doctor but were told the same “he’s doing rounds and will be here soon”, so it was left up to them to try and settle to me. It was the first time my best friend had seen me in that state of complete submission to pain, when there’s nothing I could do to stop it, and it probably scared her, as it would any normal person. But Courtney had seen me the first time in ICU, had gotten the shock then and had to take a moment to get over the tubes and machines, and when the pain was starting to drown me, she went into survival mode. A big thing I struggled with was getting comfy and she just took off all the pillows from the bed and rearranged them in a way that was perfect, tucked the blankets around me, and then just helped me breathe through it.

To add to the horrendous first day on the ward, was a pretty bad night. Because of the fentanyl I had to be on IV fluids to protect my kidneys and they were going through me so quickly I had to have a catheter so I wasn’t rushing to the toilet constantly. And the fact I had just had brain surgery. There had been issues with it not draining properly in ICU, and the line being slightly kinked so my nurse just had to straighten it out and it would continue to drain. The thing with a cath is you don’t feel the urge to wee, but when it doesn’t drain right you do get that urge, because, well, it’s not flowing. My nurse in ICU was fine to deal with it all, and even my last surgery no one had an issue. I mean why should they? It’s part of their job. But the nurse that I had during the night after the pain riddled afternoon made it seemed like I was asking her to look at the most vulgar thing in the world. Twice during the night I got the feeling that my bladder was full so I called my nurse and asked her if everything was okay and if the line was flowing because there had been issues in ICU, and she glanced at it briefly and said it was fine. So I fell asleep and the next thing I know I’ve woken up and my whole thigh, leg and bed is wet. Rather than just the line being kinked, the whole catheter had leaked. So we had a bed change at 3 in the morning and I was glad to see it go the next day.

Once I came off the PCA fentanyl I was able to come of the oxygen and I had visits with occupational therapy to start waking up and down the halls and stairs, and to start moving my neck muscles. It was an absolute blessing that I cut my hair just before my surgery because I was allowed to wash it 5 days post op, and this time we didn’t have to cut out chunks of matted hair. My first shower was by myself, whereas last time it was assisted, and I was even able to wash my hair myself! It sounds silly to be excited over that, but it’s an achievement considering all the muscles you need to wash your hair. Another achievement (again, TMI, sorry) that my nurses also celebrated with me was when my bowels finally started working. If you’ve never had surgery, or never thought about it, when you have general anesthetic it not only puts you to sleep, but puts EVERYTHING to sleep, including your bowels, and hospital policy is that you aren’t allowed to leave until things have gotten moving and since I had reached every other milestone, that was the last one.

So after being in hospital for six days, five days after my surgery, I was on my way home. The car ride was painful. I couldn’t put the back of my head on the headrest because of all the staples and sleeping the following weeks was a mission. Just getting comfortable was an impossible task and I kept snagging parts of my pillow or the couch on the incision. Sleeping was a whole other issue and lack of it induced many meltdowns. When the staples eventually came out I didn’t much relief, but I was able to put more pressure on the site. The thing is, even now, a month and a half out, I can’t lie on the floor and just relax with my head on the ground, I have to angle it so the weight isn’t on my scar. I’m not sure if that’ll change as it heals more, so we’ll just have to see.

I can’t say if this surgery was easier or harder than the last. I never expected to even need a second, but who ever really thinks they’re going to need brain surgery in their lifetime? I’m in a weird spot at the moment. I can’t say if I’ve fully healed from it all. I’m still getting a lot of nerve pain, the scar still scabs, and I still have random neck pain that I can’t explain. It’s a slow process, one that we didn’t have a lot of time to prepare for thanks to the two weeks notice before surgery. My body is still adjusting to this new scar, to the tender spots on the back of my head, but I’m getting there.