My story

As I was looking through my posts, I just realized I didn't actually share my personal journey to how I received my Moyamoya (MM) diagnosis. My apologies. But this is my story.

I started having migraines when I was 15 years old. My migraines began to come more frequently and severe as years passed. Sometimes my migraines may last from a day to a month or so. I also started having "strange" symptoms apart from my migraines since my teenage years (i.e. chest pains, tingling and numbing sensations in my left arm). More often than not, my complaints about my symptoms would be dismissed. As mentioned in my earlier posts, I was even called a hypochondriac before. Then in my college years, I had really supportive college friends (and a lecturer) who would take me to the hospital whenever I had severe migraines/chest pains. Again, ECGs will prove nothing. Again, doctors will say that I was perfectly fine and that I was just being difficult. I even tried Chinese meds (ugh!) but nothing helped.

I also noticed that I would have awful stabbing pains after engaging in sports, and the pain would attack me significantly quicker than before. I used to be able to play sports for 3 hours straight but would start feeling the stabbing pain an hour into the game but I could still continue. But as years passed, even just within 20 minutes, my head would feel like bursting and I would have to stop.

In 2011, when I was doing my Masters in Clinical Psychology, my migraine was so severe I could not function for a month. That was when I was asked to get an MRI done to rule out any biological causes for my migraines. After the MRI was done, I was found to have Multifocal (Biparietal) Lacunar Infarcts. This meant that brain cells were dying at both sides of the top of my brain. This also meant that I've been suffering silent strokes. My brain was affected by these dying/dead brain cells but it was not severe enough to cause any physical damage. This is a very rare condition for someone who was only 26 at that time. I had to undergo further tests to find out the cause of this condition, but in the end, it was a huge question mark. No one knew why. But from that day onwards, I had to be on medications for the rest of my life (Clopivid/Plavix - a blood thinner; Simvastin - cholesterol; Topiramate - seizures; Sumatriptan - painkillers).

Life went on as usual as I had to make adjustments to having this Lacunar Infarct condition. By the grace of God, I managed to graduate from my Masters' program. My migraines still continued to haunt me with a vengence. It was only in 2014, when I had relocated and was working in Singapore, when a migraine so severe landed me in the A&E in Tan Tock Seng Hospital. That led me to a referral to see a neurologist in the National Neuroscience Institute (NNI) Singapore. Again, I was faced with a skeptical neurologist who insisted that I was only experiencing panic attacks. However, I insisted for an MRA to be conducted.

Lo and behold, the MRA scans concluded that I showed signs of Moyamoya disease. I had to return to the hospital to conduct more tests to confirm the condition. Again, the grace of God directed me to a fellow Moyamoya patient, Winifred, who had very similar life experiences with me (20s, psychologist, worked at my hospital before). Winifred was a pillar of strength for me. Hearing her story and knowing that she understood my fears was a great comfort.  I couldn't afford the medical services in Singapore as I was not a citizen, neither a PR. I was concerned that I would not be able to find a surgeon in Malaysia.

Thanks to the hard work of my family and friends, we managed to find two surgeons but I ended up choosing Prof Sia as I felt I could relate with him. I also had an awesome anesthesiologist, Prof Lucy, who took great care of me in and out of the Operating Theatre. I had my first STA-MCA surgery on the right side of my brain on Oct 11, 2014. I bounced back very quickly from my first surgery. Looking back, I think it was my defense mechanism to recover so quickly. The SPECT scan after my first surgery showed that my blood flow had improved but was not up to my surgeon's expectations. Prof Sia had then prepared me that I may require a 3rd surgery if my 2nd surgery is not enough. My second surgery was on January 17th. This time round, it took me longer to recover probably because the surgeries took a toll on my body. I went through a period of depression as it was hard for me to accept that I felt weak and useless. It took me some time to get out of the depression and to create meaning and purpose for myself again.

And here I am now sharing my story with you, dear reader. To be honest, I do still get migraines suffer stroke-like symptoms now from time to time. Sometimes it's a reminder that my battle with this disease is not over, but for me to just press on and try to live life to the very best I can.

Living with this disease is no walk in the park, but the burden may become lighter when the experience is shared with others who have gone through this same path. This is a very personal journey for me, but a journey I hope I can share with fellow MM patients because we can support each other through this very trying time.