How to live with a brain tumour (Part I)

Hi. I am Rex. I am 30 years old and I have a brain tumour. This is a record of what happened since I first discovered it.

April 2019

I was born with a pair of waxy ears. A year and a half ago, I was trying to be smart and bought an ear pick tool with a USB camera online trying to deal with the problem myself (please don’t repeat the same mistake as I did). I accidentally poked my eardrums lightly on both ears. It was not painful or anything. My right ear was perfectly fine but I lost almost 80% of my hearing on my left ear in less than two hours. The ringing (tinnitus) followed immediately after.

It was scary as hell. I went to an ENT specialist immediately and had a pure tone audiometry (PTA) test. I got an 80dB hearing loss on some of the frequencies. The doctor diagnosed it as sudden sensorineural hearing loss (SSHL) and assured me I have not damaged my eardrum from my stupid act. I was prescribed with corticosteroids and Trental that supposedly aid my hearing recovery by reducing inflammation and promoting blood flow to my ear.

What does having hearing loss feel like

People often asked me what does it feel like having hearing loss. Well from what I read it is different person to person. I will try to describe what I feel to the best of my abilities.

Imagine having water in one ear that you were never able to get out. Everything sounded muffled. You completely lost the ability to make out anything spoken to you from your left. You struggled to understand people speech even in a decently quiet environment. Your bad ear became extremely sensitive to noises. Even a clap annoyed you.

That was basically me when I was experiencing severe hearing loss (80dB HL).

First recovery…or was it calm before the storm

I made a very satisfactory recovery after 1–2 weeks of high dosage corticosteroids. I recovered almost 80% of my hearing on my left and I barely noticed any difference between my left (bad) and right (good) ear. PTA several weeks later also confirmed I only had mild hearing loss at that point (20–30dB HL). I was so glad I recovered.

Everything seemed to be back to normal. I can talk to people, I can listen to music. I thought I would have a laugh with my mates blaming this on the rock/metal music I play and listen to and this would be the end of it.

Second hearing loss attack: my 29th birthday

On 23 November 2019, I was hanging out with my mates when I had my second severe hearing loss attack. I noticed sound getting muffled yet again. I was horrified. I thought I was going to be completely deaf for sure this time.

Armed with the experience of the first attack, I again sought medical attention as soon as I could. I got the same diagnosis (SSHL) and was prescribed with corticosteroids.

I was also lucky that time I had a good recovery. But since I had two attacks in one year, my doctor recommended me to get a magnetic resonance imaging (MRI) scan of my brain just to play safe and make sure there wasn’t anything else that might be causing my hearing problems. I scoffed it off, thinking there was nothing major as there can be no known causes to SSHL.

Spoiler alert, there actually is.

15 April 2020: A new diagnosis

The on-and-off hearing loss had become such a frequent occurrence from November 2019 to April 2020 that I could not ignore the doctor’s order to take an MRI scan anymore.

It was 15 April 2020. I remembered it to be a relatively mundane day. I was working from home because of COVID-19 and was taking a few hours off to collect the MRI report from the clinic. The nurse who phoned me sounded funny. ‘Are you collecting the report on your own? Will there be family members with you?’. I was taken aback. I was not usually asked these questions when collecting reports but I told her I was going alone.

The ENT specialist also looked more serious than usual.

‘Mr. Ng, having gone through the MRI report, I am sorry to inform you you have a rare brain tumour.’

A million racing thoughts flooded my brain.

‘Am I going to die?’ I thought.

‘It is a 8mm ×5mm × 4mm benign tumour on your balance and hearing nerve. It is called an acoustic neuroma.’

Somehow I managed to keep my composure. I was definitely shocked but I had a feeling he was not going to deliver good news the moment I walked into his office.

But at the same time, I was also relieved because at least there is an identifiable explanation for my hearing loss. I was immediately referred to a neurosurgeon and an oncologist, who basically gave me three options:

  1. Watchful observation
    This basically means I would be having MRI scans every year to observe the tumour’s growth. Since acoustic neuromas are known to grow very slowly, sometimes even not grow at all. Ideally, this would have been the best option because the following two options involve some form of surgery. However, this also means I would run the risk of letting it grow and potentially be suffering from more serious, life-threatening symptoms.
  2. Stereotactic radiosurgery
    This is a new form of surgery involving the use of high dosage radiation to target specifically the tumour on my balance and hearing nerve. This surgery has been proven to control and suppress the growth of tumours in a relatively safe way. No anaesthesia, no cutting open my skull, no pain, the patient can even be safely discharged immediately after the surgery. This surgery can only be performed on patients with small tumours though. Luckily mine is small.
  3. Translabyrithine craniotomy
    This is the riskiest option because it requires cutting open the skull to remove the actual tumour. Complete hearing loss is also almost guaranteed after this surgery. Mark Ruffalo, the famous actor who plays the Hulk in the Marvel Avengers franchise and was also suffering from acoustic neuroma, took this option (his tumour was much bigger than mine so stereotactic radiosurgery was not an option for him). He lost his hearing completely on his left ear.

The Cyberknife surgery

After some dead serious discussions with my family, I have decided to go for the stereotactic radiosurgery, aka the Cyberknife.

This option made the most sense to me. The benefits seemed to outweigh the costs and we did not think watchful observation was a sound move. Had we taken that option, we would still have to go through those three options again every single time I had an MRI because there is a possibility that the tumour will grow. Rather than delaying the inevitable of having surgery, we thought it would be better for me to have the surgery then than later.

The surgery was not a bed of roses.

To be continued on Part II.

Programmer | Watch enthusiast