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.

I just found out that someone I know/my loved one has Moyamoya Disease, how should I respond? - revisited

I received feedback in regards to this topic that this was a rather eye-opening post, in regards to how caregivers/loved ones should respond to a person who has Moyamoya Disease. After some reflection, I would like to add this bit.

The first tip that I gave in the first post for this topic was to avoid saying things like "it's all going to be alright" and/or "stay strong"... because those words of encouragement may end up being more upsetting than uplifting. This also leads me to my next point.

Avoid being the "doctor/advisor" to your friend

I had a difficult time phrasing this... but I've had people dismissing my symptoms especially when I am in physical pain at that moment. I understand that the person may be trying to get me to "think outside the box" or to help  me cope, and probably that person is trying to "comfort" me that maybe my pain is not due to my disease... but saying things like, "don't think about it and the pain will go away" does NOT help. I say this for several reasons:

1.  My pain doesn't come because I'm thinking of it, neither am I willing for it to interfere my daily functioning.

2. If I could easily control it by not thinking of it, I would never be in any pain at all.

3. This statement makes me feel very misunderstood and helpless because I'm stuck in a very uncomfortable/painful situation but I'm being made to feel as though I'm not trying hard enough to "get better".

When your loved one who is suffering from Moyamoya disease were to share with you that they are in physical pain, do remember that they are feeling very vulnerable. So it is important that caregivers and loved ones, be emotionally present with them. Do not discard their pain or say that the pain is occurring because they are not fighting it enough. I think empathy is the most important appropriate response for this. Think about how it's like for your loved one to have to go through this. I realize that we tend to go into "problem-solving" mode immediately, hence the temptation to give advice comes very naturally. But sometimes, all we need is a friend who is trying to understand what we are going through and to be present with us in our suffering. Leave the advice-giving to our doctors/surgeons. Again, I will emphasize that sometimes, a hug and/or a short simple "I'm so sorry that you're going through such a tough time" will suffice. 

What is very damaging is when someone labels their loved one a "hypochondriac" or assuming that they are trying to "seek attention". That happened to me when I was younger. It really broke my heart whenever I heard those words. In the end, I stopped seeking help from those particular people but tried to find out on my own what was wrong with me. You don't want your loved ones to feel rejected and pushed away from you.

I apologize if my posts sound as though we Moyamoya patients are demanding. But these suggestions can be applied to any other person who is grieving or has received a different kind of diagnosis. The reason why I have put these thoughts in writing is that I hope to improve communication between caregivers/loved ones and people who are suffering from a disease. 

I would also greatly encourage that loved ones/caregivers have a heart-to-heart discussion on how they can help support the patient as everyone has different outlooks and needs. I'm only able to cover several things that may apply to some people, but others may be different. So find a suitable time to be able to ask how you may be able to help to make things more bearable.

I just found out that someone I know/my loved one has Moyamoya Disease, how should I respond?

After finding out the diagnosis that I had this scary, high-risk disease... I yearned for support from family and friends. I have come to realize that it is not easy for people to respond to such "tragic" or negative news. Even for myself, sometimes I don't know what to say or respond when I am told "bad news".

After much thought and reflection, I'd like to give some suggestions - coming from my own experience as the sick person and giver of bad news...

Avoid saying, "stay strong" and/or "everything will be OK/alright".

I'll be honest and say this annoys me to no end. I do, however, understand the good intentions of the people who tend to say this in response to hearing bad news. I get that the person is attempting to comfort me, but actually... it makes me feel worse. Maybe not everyone will have the same response as I did, but there are people who feel the same way.

The reason why I felt worse after hearing that was because I was already feeling awful and afraid of what is to happen in the future. To tell me that I should "stay strong" made me feel like it was wrong for me to feel weak, anxious and afraid. I felt as though my emotions were dismissed and that I had to put on a mask to show I'm strong. But who benefits from that? Honestly, sometimes it seemed as though it would just make it more bearable for others because they were feeling uncomfortable. So I had to put on a facade so they wouldn't feel uneasy around me.   

I tend not to say "everything will be OK/alright" because... let's face it. Even my surgeon can't tell if anything bad would happen to me. For someone who is not in my shoes, and not struggling with my disease... you wouldn't know the anxiety, the anguish and the fear of the unknown that one experiences. To just say, that everything is going to be OK made it feel like you don't understand what I am going through and you're simplifying a complicated issue. A person with Moyamoya risks suffering from strokes before, during and even after surgery. This would mean that there will be major changes in the person's life and he/she will have to learn to adapt to these changes. There is also a sense of anticipated grief, because there may be things that the person used to enjoy doing, but may not have the chance to do them anymore due to this disease or the effects of this disease. So please don't comment lightly. 

So what do I say?

Honestly, I think sometimes we just need someone to BE there. To be present at our time of need and distress. Just sit with that person. You don't have to say anything. The more things you say, the more likely you would make the person upset. If the person is willing, give him/her a hug... or just put your hand at an appropriate body part (e.g. thigh, shoulder, etc). If the person is crying and you feel so much for the person, let out the tears... you don't have to hold back. To me, it shows that you are grieving with me. And you understand and feel the pain I'm going through. But please... this has to be GENUINE. No crocodile tears, please.

If you have to say something, think - "what would I want someone to say to me when I'm hurting? How would I be feeling if I was the one who was given this diagnosis?"

Empathize with that person. 

eg. "I'm sorry to hear that you have this disease...."  

"I can't imagine how scary it is to be given this diagnosis..."

Let the person know, if you wish to support that person (physically, emotionally, mentally, spiritually).

But don't be too pushy. Don't insist that he/she needs your help. If the person tells you he/she doesn't want or need help from you, please don't take it personally or be offended. Some people need their space to process what is going on and what needs to be done in the near future, especially after hearing devastating news. 

eg. "If you need a friend to talk to/If you need help, please let me know and I will try to support you the best I can..."

Please don't promise the moon and stars. Commit to what is feasible/realistic for you. If you let the person down after promising to help in certain areas, it will add to the person's stress. 

Be honest with the person if you are unable to provide any assistance or support when asked. Don't feel obliged to say yes, but in the end, not keeping your word.

At times, you can check in with the person to see how he/she is doing. But do let the person know that he/she can tell you if they feel that you're intruding into their space. Back off a little if needed. 

Personally, as a Christian myself, I found great comfort when Christian friends asked if they could pray for me. And they prayed WITH me. Again, don't force or insist, ensure that you have gotten consent first and only ask if you actually want to do it. 

At the end of the day, the most important thing is to be sincere and genuine towards people who are struggling with bad news. And sometimes, we don't need to DO something to comfort others. You just need to BE THERE (without saying or doing anything)... just your presence might make the world of difference to someone who is hurting... 

I may have Moyamoya Disease... Now What?

Something I've learnt from my disease is... always trust your gut. Due to the rarity of this disease, it may not be surprising if you have difficulty explaining yourself when you're experiencing a strange feeling. I know I'm not alone - being told by doctors that "you're a hypochondriac" because they can't find what it is causing all the weird sensations and symptoms. I even had a neurologist who attempted to convince me that all I was experiencing was probably a "panic attack" - a psychological reaction to stress and anxiety. I've done countless ECGs but nothing is wrong with my heart. If this has happened to you or is happening to you, I truly empathize with you. It's hard to argue with doctors because they are supposed to be the professionals of the field, but again I would recommend that you trust yourself that you know your body.

To be diagnosed with Moyamoya disease, one would have to undergo ALOT of tests.
First off, is to have an MRI/MRA (with angiogram) to be done for the radiologist to assess if there is a blockage in your arteries and to see if your MRI scan appears "smokey".
Then, you will have to go for an angiogram, which is a minor surgical procedure. With an angiogram, the radiologist would have a clearer look at your blood vessels in the brain, better than what an MRI would be able to see.
And after that, you would have to go for a SPECT scan and a CT scan to see your blood flow in the brain, to evaluate whether you have sufficient blood supply in your brain. This would also help to determine how critical your disease is, and how urgent you may need surgery. Surgery is definitely needed if you have this disease, as it is progressive. If left untreated, you may suffer a stroke and/or die.

If it is confirmed that you do have Moyamoya Disease, I would suggest that you:

1. Learn more about what Moyamoya Disease is.
What helped me face my fear of this disease was to read up on it. Since it is a rare disease, not many doctors may know what it is. So do take an initiative to find out what you're battling against. Thankfully, my training as a clinical psychologist helped somewhat with the journals that were full of medical jargons and terms. But really, I would encourage that you face this illness head on by understanding what this disease is, identifying the symptoms and also preparing yourself for what may happen due to this unfortunate disease. Some may say that ignorance is bliss, but for me... knowing what I was dealing with helped me be mentally prepared for what may happen in terms of surgery, recovery, and even stroke or death risks. Don't get me wrong, reading the risks of the disease and even the surgery was scary, but in a sense, it helped me prepare for the worst. So I hope it helps you too.

2. Reach out to your loved ones.
This may be your spouse, your family, close friends and even God. It is very difficult to go through this disease alone. To be honest, I'm the type of person who shows a strong front but this disease forced me to break that pattern. You do need people around who love and care for you at this point because there will be times when you will struggle with the fact that you have this disease. You may grieve over the potential loss of function (e.g. if you are to suffer a stroke). You would also need support before and after surgery. Having to go through brain surgery, it will take some time for you to be able to get back on your feet. It made me feel very vulnerable to have to depend on people so much, but I am so thankful for family and friends who were willing to assist me then.
As a Christian, my faith in God helped me pull through. I didn't understand why I had this disease, but just knowing that God was in control helped me cope with this illness a lot more. Knowing that I had God whom I could surrender my fears to, gave me strength to battle this disease. Praying helped me tremendously as it helped me focus on my relationship with God.

3. Acknowledge and accept your emotions
As the realization of having Moyamoya disease begins to sink in, you will go through a whirlwind of emotions. There will be days when you will feel alright, and other days when life feels bleak. I struggled with these emotions - anger, anguish, fear, anxiety, hope, courage, etc. Sounds complicated and confusing, no? Well, that was exactly the feeling. To be honest, it was irritating to have people tell me, "don't worry, everything will be fine". It felt as though my fear and sadness was dismissed by people who weren't in my shoes and would probably have no idea how it feels like to have a disease that could potentially kill you. With my experience, I believe that you should acknowledge your emotions and to express them in constructive ways. Ignoring or suppressing your feelings would only make you feel worse, and maybe even bitter. If you're feeling sad, cry. Let your emotions flow. If you're afraid, speak to a trusted person. I realize sometimes I don't actually expect my loved ones to do something for me, but just having their presence may comfort me. You may also find yourself grieving. Yes, you may not be dead... but having this disease may limit you in the things you can do in the future. And that... is a loss. You may be able to regain your abilities in the future, but there is also a possibility that you may not. So let yourself mourn.

4. Live life to the fullest
Having this disease made me realize how fragile life is. It reminded me that it is important to have a sense of purpose in life. To be honest, before my surgeries, I wasn't even sure whether I would suffer a stroke or even survive the surgeries. I then tried to do things which I loved - spending time with my family and friends, engaging in my hobbies. We don't know how much time we have here. So try to live without regrets.

There may be other things that you may do to manage. Everyone has their own coping skills, and if you manage to identify and practice them, that's great! This is no doubt an exhausting journey. But please remember that you are never alone.