Hi, I have been diagnosed of moya moya a year ago when i am 40, both left and right of the internal carotid arteries.

My initial TIA symtom was slur speech lasted about 20 second.  There after I am back to my normal self.

I have not done any surgery and this problem has been nagging me because as I view it as a time bomb if nothing is to be done to it.

Can I find out if anyone out there has went ahead with the bypass surgery when he/she is fine without further TIA?
Your feedback will be very helpful, thanks in advance.

I would also like to thank you DJ, Mrs Deej and those who help to maintain this message board as it helps to give me support when i feel at lost.

Foxglove,
I had a stroke then  they found it was due to MM. My nurologest who specialized in MM did a SPECT test and determined i did not have enough blood flow and I could have another stroke if i didn't have the surgery. Weel it has been close to six years post op and i have only had minor migraines every once and a while.

My sugestion is to find and MM Specialest neurologest and ask about the surgerys. seeing an specialest is key to our survival. The "wait and see" doctors are not specialests they just don't understand  the disorder even if they have hurd of it.

I hope this helps,
becky

Hi Becky,

Thank you so much for your response, your reply indeed give me more comfort and strength to get ready for the surgery.  I have also found someone in Singapore, Yvonne, who has gone thru the surgeries and she is connecting me to her surgeon.  I am scheduled to see the surgeon next Tue, will keep you updated again on the status.

Warmest regards,
Jane.

I have seen a 2nd doc and the doc suggest no surgery since my spect scan shows sufficient blood flow.   As I am having some funny feeling behind my head, he suggest for MRI/MRA to determine is there minor stroke happening that cannot be picked up by CT/CTA.

Hi Becky, can I asked before you have stroke did you remember experience symtoms like numbness in your fingers and toes often?

To me it seems that the doc reckon (although) they did not say it) that there are some sign before stroke actually occurs.

I had a headach that was progressivly getting worse everyday. So i went to see my family practice doctor and she prescribed me a migraine medication called "Relpax" (it is in the triptan family as is Imitrex). I took the relpax and had the stroke that night(less then 6 hour later).

Relpax or any of the triptans are extreemly dangerous to people with MM. Triptans constrict the bloodflow before relaxing the veins. In my case it caused my stroke.

The nurologest thaught my stroke was caused by my birth control, and started a battery of tests. The last test she did was an angiogram and said it looked like I have "moyamoya" but it is impossible because I am white.

My husband, mom, and I looked up MM and thank God for DJ. We demanded a seond opinion. That nurologest said fine but the next nurologest will say the same thing. I went to the mayo clinic in MN and the nurologest looked at the angio and said Yep it looks like MM, so I had one more test do do. The SPECT scan.

Needless to say we didn't ever go back to that nurologest and told her mananager of what happened. I know she still practices but I hope she doesn't dismiss any more because it doesn't fit racial profile of a disorder.

Sorry for the tangent: My stroke while it was happening symptoms:
                 I was hickuping then my hand lost all motor control and droped the glass of water. Then things went fuzzy then I blacked out. My husband said "I tryed to say: I wanted to sit down" from what he could gather becasue I slumped to the floor after that. I awoke on the couch when him crying " please just move your arm!" so i was able to lift it almost level with my sholder. The more i woke up the more timgeling I felt. Then poof i was back to "normal" in less then 20 minutes the whole thing took.

That is my story, but there may be other experences out there. It is best to check with your neurolgest of what you should watch for since htey will be more in tune to what braught on the MM and how they can help. I also still have headachs everyonce and a while and I keep a headach journal with what triggered it, did i need my medicin (basicaly excedrin with vicaden), and how long did it last.

I hope this helps,
Becky