How to live with a brain tumour (Part II)

This is a continuation of my previous article, How to live with a brain tumour (Part I)

The big day

Apart from your standard run-of-the-mill MRI scans to prepare for the surgery, I was also required to have a custom heat-moulded head mask made a few days before the actual surgery so that the software could calculate and pinpoint the exact location of the tumour. Because the prep and the surgery would be on different days, the mask and markers ensured my body would be in the same exact position.

My oncologist and neurosurgeon prepared the actual treatment plan using all the measurements they gathered during that day. Cyberknife, being a completely automated treatment, doctors were no required to be present on my actual big day as there would be technicians handling all the inputs and controls for the surgery.

A Cyberknife mask (credits: reddit)

The surgery took place on 29 April 2020.

The operation theatre was a spacious room with soothing music on. At the centre, there was a hard bed for me to lie down and behind it was the Cyberknife M6 system with a fully automated, 360-degree swingable robotic arm, responsible for targeting and delivering the radiation to my tumour.

The Cyberknife operation theatre in Hong Kong Sanitorium & Hospital

The technicians did their best to assure me everything is going to be OK while they secured me with the head mask made a few days ago. They left the room soon after to oversee the surgery from a control room one floor above due to the radioactive nature of it.

I was absolutely terrified when the robotic arm whirled around me making eerie sounds. I did not even dare to swallow my saliva, fearing even the slightest movement of my head would affect the targeting of the Cyberknife. It was a hellish 30–40-minute session that seemed like forever.

When I finally heard an announcement telling me it was over, I did not feel that different. There was slight vertigo when I reached home but nothing too serious. I even met up with a friend the next day, thinking this would be all behind me while I would be on my way of full recovery.

I was so, so wrong.

The nightmare

It was around 3 am in the middle of the night. I was awakened by a nightmare with cold sweat. I sat up on my bed. Everything was spinning. I did not understand what was happening. I closed my eyes and reopened. Everything was still spinning. I panicked and felt like throwing up. I tried to get to the bathroom. I could not even manage the five-step distance to the bathroom. I was toppling like a drunk. I had to crawl-walked my way to the toilet.

Believe it or not, this song was in my head that night I thought I was going to die

I was literally hugging the toilet bowl at that point. I threw up five or six times that night. I tried going back to sleep. None worked and I was still feeling like dying. Luckily I am living with my parents (Hong Kong eh?) and I woke them up. Had I moved out and lived on my own, I am not sure I could even manage to call an ambulance on my own.

The inpatient

At that time I was feeling so sick and nauseous the nurses gave me three injections of Gravol (an anti-vertigo drug) and put me on a Ringer’s lactate drip. They even gave me a urinal to pee in but I was too dignified to use one :)

Me, in hospital, bearly having the appetite to enjoy my favourite comfort food: fishball noodles

I was again prescribed with corticosteroids and vasodilators. This time they also threw anti-vertigo drugs into the mix. The sedative effect was so strong that during my hospital stay, I was either passed out or was at the brink of doing so.

Night at the hospital was also terrible. With the ongoing COVID-19 pandemic, I had to wear a face mask even when I slept. I was either woken by other patients coughing or the nurse trying to take my blood pressure at 3 am. I couldn’t sleep a wink.

MRI scan and PTA test followed the next day. Fortunately, nothing was too out of the ordinary. By then my left ear was still at around the mild hearing loss mark and results showed the same. I got a little bit better and was discharged.

I took a week-long rest at home the week after.

The aftermath

By this time I was almost completely numb to these attacks. It was doctor visits after doctor visits; MRI scans after MRI scans; tests after tests. I was not so lucky with the meds after the surgery. It took four weeks to regain 50 per cent of my left ear’s hearing back.

The most frequent PTA I did on 4th September 2020. Left ear showing a 40–50db hearing loss at 500–2000Hz.

Speech comprehension has started to become difficult. ‘Smile and nod’ has become my signature move. It has taken a toll on my ability to actually communicate with people (not something I am good at to begin with).

My three doctors (ENT specialist, neurosurgeon, and oncologist) admitted they were at their wits’ end. They have never seen a patient react so poorly to the Cyberknife surgery and they have no idea why I had so many sudden hearing loss episodes.

I was recommended hearing aids mid-September. I had no choice but to accept my hearing loss is very likely to be permanent and I would need hearing aids for the rest of my life.

My hearing aids: a Widex Moment 330

My Widex Moment does not magically solve everything though. As of the day of writing (2nd October 2020), speeches still sound muddled and high frequencies are still tinny and metallic.

Modern hearing aids usually come with an app that lets you switch hearing environments. This Zen B profile has a picture of a poop

The best I can do is to use the hearing aid’s app to do rough adjustments on the equaliser to lower those unwanted frequencies.

Strangely enough, having a hearing aid makes me appreciate Apple iPhones a lot more (I have always been an Android user since iPhone 4) because they have a Made For iPhone standard for hearing devices to stream sound directly from their iPhones. Android has been pretty slow in this regard and up to this day, there are only two hearing aid models supporting to Made for Android standard.

The outlook

Outlook is bleak but I have come to terms with it. Perhaps I would try other non-conventional treatments like acupuncture when my situation stabilises. I have actually had around eight acupuncture sessions but it did not do much. Maybe it will this time. I don’t know.

Thank you for reading and taking a trip down memory lane with me. I hope you now know more about acoustic neuroma. I also felt much better writing this all out. Thanks again.

Programmer | Watch enthusiast