Hi
A month ago my husband Ian and I were told that our 7 year old son had MoyaMoya following a MRI scan done in Belfast. He has been suffering from bad headaches and sickness for about 2 years, also he has had a few episodes of slurring in his speech and what he describes as feeling funny in his hands.  He had a fit about a year ago and lost power down his right side for about 15 minutes but came round ok.
At the moment he is great and very bright and doing well in school.
Our problem is he has been referred to Great Ormand Street Hospital in London, we are currently waiting on a date to go over there(we are on the phone everyday) but no joy yet.
Our doctor in the Royal Victoria Hospital told us Joe definatley has MoyaMoya and needed surgery as soon as possible but the doctors in GOSH are wanting to do more tests on him before they decide what course of action to take.
Has anyone else had this problem?
We know the dangers if he doesn't get the surgery and we are very concerned about the time that has already lasped.

Michele

Hi Michele  [smiley=hiya.gif] -

Did Joe have an angiogram (aka arteriogram) yet?  This is a standard test before going for the surgery.  There are also SPECT scans and some other tests, but the angiograms are important to have to see what blood vessels are there for the surgery.  I had problems with speech as well - aphasia, I think it's called (I probably didn't spell it right!).  Anyway, good luck to you and your son - please keep us posted!!

-Shari

HI
Joe hasn't had an aniogram yet, they are going to do one in GOSH if they think it is necessary.
Michele

Hi Michele,

The angiogram is THE test needed to correctly diagnose moyamoya!  MRI, MRA, SPECT, all help confirm the diagnoses, but the angiogram is the only way to actually confirm the "puff of smoke" which is moyamoya.

Hope this helps

Hi DJ
Thanks for your help, i will be insisting on this test when we eventually get to GOSH.
Also thanks for this site it has been a godsend to us in this last month, because the doctors in the Royal Victoria Hospital in Belfast couldn't tell us much about MOYAMOYA only that it is progressive, which really scared us.  Now we are feeling more positive and just want things to start moving
Michele