Hi All,

I am 25 years old, male of Malaysian background.

I had my first TIA (loss of any feelings on my left side of my body) around 2 years ago and told myself I should go to sleep as it was 3am. I slept and felt fine the next day.

Nothing happened after that, until one fateful day a year and a half ago, I had my second TIA. I thought to myself, something is seriously wrong here. I went to see my GP about it and he told me it might be related to stress and told me to stay relax and calm. I went to get a second opinion and the GP told me to see a neurologist.

After seeing the neurologist, I did some blood test, MRA & MRI. The neuroradiographer's report came back saying i having narrowing blood vessels and it might be moya moya or vasculitis. My blood results came back and it showed negative for vasculitis.

Did an angiogram at Royal Prince Alfred Hospital in November 2007, by Dr Geoffrey Parker.

Angiogram confirmed I had Moya Moya on both sides. Right hand side is more occluded than the left.

I was referred to Dr Louise Allport (Neurologist in St George Hospital) - due to her having more experience with MM cases. She is really great. Good bedside manner and taking time to explain and answer all your questions.

Then, after that I met up with Dr Marcus Stoodley (neurosurgeon)  in discussing the need of doing operation anytime soon. He advised me to wait as my narrowing is not too bad at this stage and I was put on aspirin (blood thinner) & high blood pressure medication (i have high blood pressure). The plan was to do a MRI every 6 months.

6 months after that, I went for my MRI scan and saw Dr Stoodley. He told me my condition has accelerated and I might have to go into surgery within a months time. Went to Prince of Wales Hospital to do another spect diamox and Angiogram. Dr Stoodley said it showed my MCA - middle cerebral artery is 90% blocked on my right side, but the good news were my posterior arteries are compensating for the lack of from MCA.

Now i am booked in for the surgery on the 22 Oct in Dalcross Hospital. I am just nervous and don't really know what should I do prior to the surgery. Do i need to speak to my Neurosurgeon before the surgery?

Welcome to our family!!

I think with any "brain" surgery there is a sense of apprehention no matter what they tell you.  Moyamoya is a progressive disease, so the fact that you had more narrowing doesn't surprise me at all.  I would strongly suggest if you are having nervous feelings, ask all the questions you need to help you feel relaxed and confidant.  You have come here for answers, and I can tell you, we will do our best to give you the information you are looking for.  Read as much as you can here, and again, ask questions if you need to.

To answer your question on what you should do prior, not real sure what you mean?  However, I would live your life as you have, do what the doctors recommend and remain positive!!  Surgery is the ONLY treatment option with this progressive disease, if not, the occlusion will continue to worsen, therefore causing serious side effects, ie, TIA's, hemmorage, strokes etc.

I look forward to hearing from you and hope you continue to keep us updated on your journey.

You will be in our thoughts and prayers!!

Stephanie  

   

I second what Stephanie said. Being positive is key before and after the surgery. Just think you may not need a holloween costume. I had my surgery on the 22 of this month. And I went out as Frankinestine. Every one thaught it was awsome.  I will pray for you.
Becky

Hi!

I've sent you a PM, and sent you my email address.... you are in fantastic hands with Prof Stoodley and the Dalcross team.  
Getting the surgery done asap was the best decision I've ever made, two months down the track I have never felt better, it has changed my whole life!  

Take care and keep smiling

Kylie