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.
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