Katy, Surrey

The Adventures of Clive the Cavernoma

I’m going to take you on an adventure. A brain adventure. As that is what our little cavernomas have decided to take us on. My adventure started when I moved to the Southern Hemisphere, to experience working as a doctor in a slightly less stressful health system, with sunshine on tap and in the land of the all day brunch that is Australia. What I didn’t have in mind was getting to know the Australian Health Care System rather too well.

I am proof that doctors make the worse patients. After ignoring intermittent right sided pain and weakness for the best part of 2 months, my body decided to give me a wake-up call. Suddenly, after finishing a ward round, I had a wave of vertigo, which was swiftly followed by loss of feeling of my right arm. I really was in the right place at the right time when it happened. I was suddenly the “stroke call”, which is the alarm that goes out on doctors pagers, telling them that there’s a patient that needs urgent review with a potential stroke. This alarm always causes my heart to race, but this time my heart was racing even faster as I was the patient.

Pre-Op Clive

The scans showed a bleed in my left parietal lobe from a cavernoma in the sensory cortex.
I named him Clive.

The next 9 months of the adventure brought me to have close encounters with hospital food and 4am blood pressure checks. You see Clive was not a happy Cavernoma and he enjoyed throwing the odd tantrum. I had five bleeds in total during this period and the deposits left over from the breakdown of the bleeds caused partial seizure epilepsy, which refused to be kept in check with medication. During this time I learnt to appreciate the invention of the pill box, which kept me organised as I titrated up and down multiple drugs regularly.

With the growing side effects of the medication that weren’t controlling the seizures, episodes of drug toxicity and a constant “cotton wool brain” from the “oozing” of Clive, a decision was finally made. I had awake brain surgery to remove Clive the Cavernoma and the deposits from the bleeds.

Firstly AWAKE brain surgery was the funniest experience I’ve ever had. I said some embarrassing things in that operation (which I had asked to be recorded), and it still feels very surreal. On a serious note though, the thought of it is definitely scarier than the experience. I was woken up, slightly disorientated, but very comfortable and with a slight feeling of pressure around the head. Easy.

Learning to walk again

Clive, Post Op

Clive, Post Op

Post-op was the hard part. I woke up unable to feel or move my entire right leg. I still remember the feeling when I stood for the first time, in the huge forearm support frame, looking at my right leg with distrust. It was as if my leg had turned into a feather and I was asking it to support my entire body weight. A goal chart was essential at this point to get myself through the next few weeks in hospital. After practicing all weekend with my physiotherapist brother I was able to surprise the medical team and physiotherapists when I finally walked down the corridor unassisted and subsequently out of the front door with my discharge papers. Freedom!

The final adventure Clive was going to take me on was that of rehabilitation. A time of naps, exhaustion after walking 100 metres, the return of the “cotton wool brain” and the need for intense concentration in order to put a sentence together. Any increase in pressure led to a “headquake” feeling, as if the bones were like tectonic plates grating together, making sneezing an undesirable activity. The frustrations of not being able to do what I used to do such as running and reading were difficult. Neuro recovery seems to take you forward for a few days and then backwards in huge steps the next. However with time, patience, perseverance and kindness, I have passed milestones in these last 6 months of rehabilitation and every day feeling a little step closer to my old (now Clive less) self.

This has been the easy part, telling you my story. What I really want to talk about are the lessons that I’ve learnt, in the hope that any one of them may be useful for both Cavernoma patients and relatives.

  • Lesson 1: ‘Clive the Cavernoma’. Naming it sounds like an odd thing to do but it worked wonders as a coping mechanism. It’s an odd feeling knowing that there’s something there in your brain that you have no control over, but giving that thing a name, something that you can refer to or express emotions at, made acceptance that much easier.

  • Lesson 2: My stroke…The hidden injury. Post Op I remember getting onto a crowded bus and thinking how on earth do I get a seat? To strangers I looked pretty normal. When really even balancing for a few seconds was exhausting. Unlike broken bones, brain injury is hidden from sight, secretly causing mischief to the way the body functions. Reminding yourself and everyone else around you is a key step to recovery and how you get that seat on a bus.

  • Lesson 3: That epic goal chart. Post injury or post-op…goals are the way to keep yourself looking forward. From showering independently to running that 10km 9 months later, each goal is no less greater than the other.

  • Lesson 4: Feel the sand beneath your toes and swim the ocean blue. After ending up with right leg sensory loss, I found that contact with sand and water was a great way to send feedback to the brain. Walking on sand is perfect for testing your balance too whilst water helps to awaken those lazy muscles and rejuvenate those lost neuro-connections. Shallow end first!

  • Lesson 5: Rehabilitate…’Pilates is gaining the mastery of your mind over the complete control of your body’ Joseph Pilates. With weekly Pilates sessions, I re-gained coordination, proprioception and strength that I had lost from having brain surgery.

  • Lesson 6: Sleepyhead. Brains need naps post injury. Others areas of the brain are now having to take over the job of the area that’s injured, an exhausting business. Fatigue has been my greatest nemesis and I find that when I overdo it, the neurological deficits get worse. Listening to your body is essential for recovery and the all-important little nana naps throughout the day will help the brain re-charge.

  • Lesson 7: Love your brain. Care for it, feed it, listen to it; don’t let it trick you into thinking you can undertake a multiple of tasks…oh whilst learning how to walk again. Time, rest, gentle exercise and a good diet is what the brain needs to recover and keep it healthy. The best advice I was given was this…”Don’t forget, the brain takes longer than a broken leg to heal”.

  • Lesson 8: I have a hole in my brain…The greatness of neuroplasticity. Some other wonderful neurons in my brain are now doing some weight lifting and have taken on jobs that the injured part can no longer do. 6 months post-op, I can walk, run (sort of) and almost balance on one leg. Neuro rehab is not an easy path and as a patient you take your friends and family along this rocky path with you. With all injuries and illnesses it’s mentally and emotionally exhausting for everyone involved, but the most important thing I’ve learned is to share the experience. Which helps, when you can’t quite function on those brain exhaustion days, to know that your people are right here with you. Don’t be hard on yourself, push yourself, but not too much and as always #loveyourbrain.

Katy on a boat, 2017

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