My 16-year-old has moyamoya.  I am devastated.  He has been having "spells" that we have been trying to get to the bottom of for over a year.  They have gotten to the point where they have been considered seizures.  We started with the pediatrician and when he got tired of telling us that there was nothing wrong he sent us to a cardiologist.  The cardiologist did all the important tests and declared that he has a healthy heart.  Back to the pediatrician.  He grudgingly sent him to a neurologist.  They did an in-office eeg, which was fine.  He was scheduled, and did, a video eeg in the hospital.  That too, turned out fine.  The neurologist decided he was suffering from depression and should see a psychiatrist.  I pushed for a mri.  Neurologist wasn't happy but scheduled one so he could be rid of me.

It took a month to get the mri.  It was, apparently, the soonest it couldn't possibly be performed.  I got a call the day after the mri (message was on the machine when I walked in from my dad's funeral) saying that they had found narrowing of the blood vessels and would need a mra with perfusion.  Somehow they got that scheduled for the following Monday.  (Yes, I am feeling a little bitter right now.)

We have an appointment with the neurologist tomorrow and will be referred to a neurosurgeon at that time.

I would like to thank all of you here for the wealth of information you have shared.

Lynn,
Welcome to the family. I agree with Mayhem, you share a common story with most of us. At least they seem to be getting better. It took me 6 months of MRIs, MRAs, they did a bunch of heart tests, and the angiogram. The angiogram was read by a neuroradiologist who had seen all the other testing they have done and said to my husband look up moyamoya when you follow up with the neurologist. My original neurologist said I couldn't have MM because I am not Asian. Well Second opinion later, I am here.

If you have any questions about the surgeries, medications, recovery, ect. Please feel free to ask. We can also share our experiences with the process.

Stay Strong,
Becky

We were very lucky. When 9 yr old Samy had her first clear incident, she fainted and woke up confused the MRI,MRA was one of the first test the neurologist ordered
Diane