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. 

Wow. I'm sure that there are a few here who could share the same story, as far as getting the docs to do an MRI. I know personally my neuro was convinced I was having migraines and an MRI would be a waste, but my now exwife was such a pain in his ass that he consented just to shut her up. When he saw the films he was speechless for 20 minutes.

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

   I'm so sorry for how long it's taken to get a diagnosis. It's not uncommon. I'm very glad you found your way to this group. Feel free to ask questions and look for support through this journey. I remember those days following diagnosis and it was so hard on our family. This web site wasn't around then so I had no one to talk wiht who had been through it. How's your son doing? It sounds like he hasn't suffered any strokes. If you look around on this site you will find a lot of information that may help you when you meet wiht the Neurologist. Please check out the list of surgeons who are familiar/experts in this surgery. Again ask away if you have questions someone here will most likely be able to help. Keep us posted...
Mary Grace
PS my daughter was diagnosed exactly 9yrs ago next week.She ahd her surgeries in Boston with Dr. Scott, she was 5 yrs old at the time. She's had no strokes since the surgeries.

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

Lynn,

Welcome to the MM family, and please accept my condolences for the loss of your father.  Loss of a loved one & a MM diagnosis is a lot to be hit with all at once.  I'm glad you found your way to this website.  You will receive lots of support here. 

I hope things will start to improve for your son now that he has a correct diagnosis.  As other's have posted, the circuitous route to a diagnosis is not uncommon.  Kudos to you for following your warrior-mom instincts in search of medical answers for your son.

Best regards,

Jennifer