#3: Brain Surgery & Post-Op

Brain Surgery

03/06/2020

The morning we’d all been waiting for eventually came around. Before being taken down the theatre I was washed and then left to wait in my hospital bed for an hour or so (but this felt like forever). I tried to distract myself from the continuous thoughts that were consuming my head. I couldn’t help but think about the worst case scenario - what if I actually don’t make it through? What if I lose my memory? What if I lose my speech? All potential outcomes of the surgery I was about to undergo. Under normal circumstances, my family would have been with me before my operation, and waiting for me when I woke up. I couldn’t help but get upset and feel anxious about the surgery. But it is amazing how brave you have to be when you are alone.

To try and distract myself I listened to PartyNextDoor’s album ‘Party Mobile’ which came out during lockdown. There’s nothing a bit of PND can’t solve. After calling Richard and my family it was time for me to go down to theatre. The porters came to collect me and I began to cry again. Mavis (the nurse) asked if I’d like to take Flopper (my cuddly companion since the year 2000) with me, to which I replied, ‘am I allowed?’. I felt five years old again. As I’m writing this it’s just dawned on me that Flopper, my tiny toy dog, watched the surgeons peel back my scalp, cut my skull open, dissect my brain, and carefully fix it back together. Wow Flopper. We really have been through it all together.

Before the operation took place I was wheeled down to the anaesthetic room. It was just like you see in the films. Very clinical, lots of bright lights, and the surgeons dressed head to toe in PPE (googles, masks, suits the lot). I already had a cannula in my right arm so the anesthetic was inserted almost straight away. I was told ‘try to keep your eyes open’, and within seconds I felt extremely relaxed and drifted off into a deep sleep, holding onto Flopper’s paw.

The Operation Explained:

I purposely didn’t ask too many questions about the operation beforehand, as I knew it would make me 10x more worried than I already was… but let’s just say I was pretty shocked when I did find out what actually went down in the operation theatre that Wednesday morning...

Following the general anaesthetic, I was then taken into the operating theatre and transferred onto a table. My head would have been placed in a device to keep it in a fixed position during the procedure. The initial opening requires some hair to be shaved (another thing I was dreading in the build up to all of this), so that the surgeon can make an incision in the skin. The skin and surrounding muscles are then moved aside - a.k.a: my scalp was peeled open :). The bone in the exposed part of the skull is then cut and the bone flap is lifted, exposing a covering called the ‘dura’ which protects the brain tissues. The dura is cut and the AVM is located with the help of high-powered microscopes. The brain tissues around the AVM are separated so that the AVM can be removed as a single piece. To end the procedure, the neurosurgeon closes the dura and places the bone flap back in its original position. Tiny plates and screws are used to secure the bone flap and keep it in place. Finally, the skin is restored to its original position and clipped back together.

Intensive Care Unit

After a 6.5 hour operation (!!!) I was finally woken up. I’m not sure if I was dreaming or if I was still coming round from the drugs (probably both) but I remember thinking that I had woken up in a hut… on stilts… and the people around me were horses. After realising that I had just woken up from brain surgery and was now in ICU the first thing that came into my head was can I remember who my family are? And who Richard is? And who my friends are? Thankfully I could, my memory was still the same.

I was instantly sick from the anaesthetic, my head was very tender and my back was so sore from lying on an operating table for such a long period of time. I couldn’t keep my eyes open. I was aware of the pain that I was in but also knowing there was nothing I could do about it, so sleep was the best option. I could hear conversations around me emphasising that the operation went well, so despite the pain I felt extremely relieved. I was constantly woken up for various checks. One being my catheter (shock) which wasn’t draining properly, so they had to fit another one - not a vibe post surgery. I remember thinking, well I haven’t been allowed to drink any water since midnight so surely that’s why i’m not producing urine but, I guess I have no say in this! Next up - the drain in my head was removed (this was fitted under the skin to remove all the fluid and blood caused from the operation). I was still yet to examine my wound and see how much hair they’d shaved… 28 staples later and a decent head of hair left, we made it.

I was slightly hopeful that after the operation I would’ve regained some movement back in my left side, but still, nothing. I felt slightly disheartened but thankful more than anything - to still be here following such a delicate operation. The physio team came to see me and began to put together a plan for stage one of my recovery. During my time in ICU all I wanted to do was be left alone to sleep but I was constantly being prodded, poked and asked a million questions. I was expecting to be in ICU for at least 2 days but my time there lasted only 16 hours and I was moved back to Kent Ward.

Kent Ward 2.0

04/06/2020

I was really happy to be back here - somewhere familiar amidst all the uncertainty - as I was expecting to end up on a different ward post-op. I spent the next 3 days sleeping. I didn’t want to eat or to even look at my phone, I only woke up when I needed more morphine to ease the unbearable head pain. My eyes were getting increasingly more swollen and it became harder to see out of them by the day - another excuse for me to close them and just go to sleep instead. When I finally found the energy to look at my phone I took a look at the swelling, and let’s just say it was not what I was expecting. The Doctor’s told me my face was swollen and this was normal but good GOD this was something else...

When the physio who was on call that weekend came to see me to assess the mobility in my left arm and leg, I was still unable to move them or feel anything at all. I knew this was probably going to be the case, however there was a small part of me that couldn’t help but feel disheartened as I thought perhaps I could be that miracle. For the rest of the weekend I was dosed up on all sorts of tablets - some of which I don’t even know what for - but one of them was to prevent any seizures from happening (which is likely after brain surgery) and I also started the nightly injections to stop blood clots from forming.

Monday came around and I had my first rehab session with two lovely physios - shoutout to Jade and Liz! They got me standing up, strapped in a brace, and I was able to bend my knee ever so slightly! This really was a miracle moment - I WAS that miracle girl! But seriously - this was huge news. After being examined over the weekend I was told that it could take months to regain any sort of movement in my left side, but here I was just 5 days post-op! From three weeks out of action my left leg had shrunk to half the size of my right due to loss of muscle, and the same had happened to my arm. So the recovery was more than just training my brain to move them again, it was about rebuilding the muscle and strength too - all things that would take time. This was a marathon not a sprint.

One of the other neurological surgeons came and saw me after my operation and said he’d been operating on another patient in a room close by. He (quote) said to me, “I kept popping my head in to see how you were getting on. It was a very neat operation!” I couldn’t help thinking that, like Flopper, he had seen my skull cut open and brain in the flesh...

I had to have a couple of follow up scans to confirm that the AVM had been removed successfully - the doctors were 99% certain it had. I continued with my physio sessions and was seeing tiny improvements in my leg, but nothing in my arm yet. I received a number of visits from my surgeon who was so impressed with how far I’d come already. Prior to the operation he didn’t sound too hopeful that I would ever be able to move my left side again. Perhaps he was being cautious, not wanting to get my hopes up. But after seeing me post op his stance had completely changed. I was certain that my left side would make some sort of recovery and this was reassuring in moving forward. In the middle of one physio session I was lucky enough to spot my mum and my sister who were in the middle of a Deberoo food drop - I was practising bending and straightening my knee and they caught me mid-action! This was such a nice surprise for all of us, and they caught me at a good time.

A bit like the first time (except worse) - where my hair was matted with blood from the fall - my hair had reformed into one giant dreadlock from where I had been lying down for 7 days straight unable to brush or wash my hair. Similarly to last time it took a while for this to be sorted out, but eventually a brave healthcare assistant offered to brush through my hair, and out came the dreadlock.

With the dreadlock out, it was time to tackle the 28 staples in my head. When I mean staples, picture those giant staple guns that your teachers used to use to redecorate the class notice board… also can I just add - I was under no local anesthetic, not even any numbing cream. Out the pliers came, and one by one, they removed the staples in my head. Another shoutout to my roommates Rachel and Debbie who were cheering me on throughout the process. This too was a success and I could finally see my scar... (keep scrolling if you’re squeamish).

I had various cognitive tests to cover all grounds (to check that the other important regions of the brain were still working - memory, speech, spatial awareness etc). In one of the tests I had to copy out a number of diagrams - one of them being a clock - and it honestly looked like a child in reception had drawn it. I remember thinking oh no, what’s gone on here then - does this mean this part of my brain has been affected too? Or is it because I can’t use my left side to keep the paper still? My GCSE Art skills were put to the test and I can confirm (despite the wonky clock) that I passed.

Just as I was beginning to feel comfortable and content (as one can be in hospital), without warning I was moved to a different ward. This was very unsettling and I immediately felt emotional knowing I’d no longer see the wonderful staff that I’d formed such strong relationships with. Luckily, Emilija was working while this news was given to me so she helped pack up my things - considering I arrived on this ward with just 1 bag, I was somehow leaving with 8 - and wheeled me down to Brodie on the floor below. One final hair braid later, we hugged goodbye and hoped to cross paths again one day…

Brodie Ward:

14 - 24/06/2020

My time on Brodie was spent waiting for the news of transferring to Queen Mary’s Rehabilitation Hospital in Roehampton. Once again, the sort of information you get given right at the last minute. I spent the first two days in a dark, quiet room with 4 other patients, and felt extremely unsettled having just left the comfort of Kent Ward. Whilst I couldn’t help but wish I could be back on Kent, one of the positives of being here was that there was a balcony. In one of my occupational therapy sessions I had to test drive my wheelchair and I was allowed to take it outside. This was my first time outside in 4 weeks so it was really refreshing. For a second I forgot about the 4 walls that had surrounded me for the past month. The peace I felt didn’t last too long. When I returned from the balcony, I was told I would soon be taken down to the theatre for a follow up angiogram - great. The second time round wasn’t any easier, but I did get to see the before and after scans which helped cement everything that I’d gone through. The neurosurgeons did an incredible job at successfully removing the AVM and I will be forever grateful that I was transferred to St.George’s all those weeks ago.

After 2 nights here I was moved (again) to another room on the same ward which triggered the same unsettling feeling I had experienced a few nights before. Despite this, I was thankful to be moved in the end because I was sharing a bay with my old ward-mate Debbie. This quiet 2 bed bay had lots of windows and suited us perfectly.

My time on Brodie continued to improve as I was reunited with Dragos, the nurse I met on my very first night in hospital. Not only was he another familiar face to help ease all the unsettlement, but we reflected on how far I had come since that first night on William Drummond ward just 4 weeks ago (falling all over the place like a life-sized rag doll). This made me feel extremely proud and excited to see what the rest of my recovery has in store. Debbie and I got on like a house on fire - despite our 37 year age gap - and had some real belly laughing moments. We spent a good chunk of our time here launching percy pigs at one another whilst signing Destiny's Child from the top of our voices and this is how I like to remember my time on Brodie Ward.

Moving different wards meant working with a different physio team. This was disappointing as I really enjoyed my physio sessions with the team on Kent and didn’t even have the chance to say thank you and goodbye. Despite this, the new physios were lovely and threw me straight into the deep end, as it was here that I took my first steps! (See Instagram for footage!) I had to wear a fitted splint for support, as the loss of muscle in my quadricep and calf meant that the stability surrounding my knee and ankle was very weak. This was a feeling like no other, and although my weak hip flexors pinched with every step forward, I was walking!! (Something I was under the impression I might never be able to do again). I was also now able to tense my bicep and shoulder (exciting!), although my hand remained extremely tense with no finger control and as a natural reaction to *anything* slightly strenuous, my arm would curl up and pull towards my body. This is something very common within neurological disorders, but something that will require intense therapy and patience.

Although I was getting used to being away from home and found daily sparks of happiness in hospital, I still had my down days. Two weeks post-op I was deemed medically ‘all-clear’ and so the only thing keeping me was the wait to be transferred to Queen Mary’s for the intense rehabilitation to get going. This was frustrating and another thing out of my control which I struggled to deal with, especially with the many messages from people asking when ‘the big move’ was going to take place. There was talk of having to wait another 6 weeks for a bed at QM, but I was also told I could be moving within the next week - another prime example of the lack of communication. Despite potentially only having to wait a few more days to be transferred, someone of greater neurological support needed my bed on Brodie, so *again* without warning, I was shipped back to my local hospital until a bed at Queen Mary’s became available.

My time in Frimley Park to be continued in #4!